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  • The Port and Losing My Hair

    So many updates to share! Everything about cancer is new to me. There is so much about my body that I know nothing about. Nor do I understand how this is all going to work. I am going through treatment, trying to understand it all, and process all at the same time! It can certainly be overwhelming! Today, I am focusing on two topics. The decision to get my port placed, and an update on my hair situation! I was in shock when I found out that I was going to have my port placed in the morning and a few hours later receive my first chemo treatment. While this sounded rushed to me, it was pretty standard practice. However, the moment I was on the stretcher in the hospital, being wheeled into the operating room, the tears came streaming. I’ve never had to have surgery before and when I came into the operating room, it was just like what you would expect from seeing ER or House on T.V: Lots of people in scrubs, face masks, sterile table, big bright lights, even a two-way mirror where others are monitoring computer screens. If this isn’t your normal, it is definitely scary! From there, I was brought up to the infusion center to receive my first round of chemo. Again, being my first time, everything is so overwhelming! The Adriamycin and Cytoxan came in a bag that had the yellow skull symbol on it reminding me that the contents inside the bag were dangerous and toxic. Nurses had gray gloves and were handling the IV and chemicals with such care and I was just sitting there waiting for these new drugs to start coursing through my body. A very overwhelming day! But I survived and I am here to tell you all about it!

  • AC Chemo

    Prior to having my port placed, I had a brief discussion with others about the difference between receiving chemo intravenously verses through a port. Everyone has an opinion and what works well for one, may not work well for someone else. I have complete faith in my doctors and care team so when they recommended I go with the port placement, I wasn’t going to question the decision. Even though I got an infection early on and was on a “port holiday”, that wasn’t going to stop my team from staying on track with my chemotherapy treatments! However, instead of administering it through my port, we were going to do it intravenously! (insert fainting right about now!) Needles are not my friend and I do not handle pain well at all so when I found out that this was how I was going to receive my infusion for the next two rounds, I had a really hard time. I am not saying this is for everyone, but this definitely wasn’t for me. However, I didn’t have a choice, the chemo show had to go on! The verdict: Now that I have experienced receiving chemo through both the port and the veins, I’m going with the port, for the win!

  • I'm Halfway There: Navigating Radiation

    I am halfway through radiation treatment (15/30)! So far so good. I wasn’t really sure what to expect. Like everything, I was doing way too much research and preparing for the worst. Radiation is a local treatment impacting just the area of cells being radiated (unlike chemotherapy). In my case, we are using radiation as part of my preventative care and to be extra sure that the cancer will not recur. By going through radiation, we are “killing” any residual, or leftover, rogue cancer cells that were not removed from surgery, or did not “die” from chemo. Overall, I have to say, I am responding to radiation pretty well. The skin looks good and after 15 rounds, I’m not too red (yet). I like to thank my Italian genes for allowing me to tan well! Outside of skin irritation, other side effects include fatigue. While I am managing this well, I do get tired and nap when I have to. If anything, just listen to your body as it knows best! When going through radiation, it is important to speak with your doctor about the pros and cons. Like any treatment, a benefit analysis needs to be taking into consideration. In my case, because we are radiating on my left breast and lymph node area (which I did not realize goes up to your color bone!) a few key risk factors needed to be hashed out. For example, the impact radiation would have on my heart and lungs were a big concern for me! I am a very active person and plan on remaining active for a long time! Having heart and lung problems are not things I am looking forward to! Nor is the potential development of lymphedema, or other cancer in the long term. While there are a few risks to manage, I cannot lose sight of my initial goal which is to be cancer free and ensure breast cancer does not return! As such, radiation and onward. Moisturizers I recommend:

  • Adriamycin and Cytoxan

    The is always a long laundry list of side effects and symptoms associated with chemotherapy. Some people are lucky and only get one or two of the side effects. Others not so much, they are hit with every possible side effect listed! Adriamycin, Cytoxan and Taxol Chemotherapy Adriamycin, Cytoxan and Taxol Background I thought I would share the above video with you all which takes a deep dive into exactly how I am feeling after treatment. To date, I have had 4 rounds of Adriamycin and Cytoxan, often referred to as "AC", followed by 5 of Taxol; only 7 more chemo treatments to go. Taxol is typically given in combination with other chemotherapy medicines, such as Adriamycin and Cytoxan, and all can be used to treat patients with primary breast cancer (breast cancer that hasn't spread beyond the breast). Taxol can also be used to treat advanced-stage breast cancer that is not responding to standard chemotherapy treatment. Adriamycin, Cytoxan and Taxol Side Effects The Adriamycin, Cytoxan and Taxol side effects that I am experiencing thus far include: -Hair loss -Starting to loose my eye lashes, you can really tell when I blink! -Neuropathy / numbness/ tingling in the fingers and hand -"Chemo Brain" a lot of trouble coming up with the right word -Fatigue -Lack of concentration and focus (I think this is associated with some of the fatigue and chemo brain I am feeling -Upset stomach -Extreme tiredness Managing Adriamycin, Cytoxan and Taxol Side Effects I'm managing well though. I think it is important with all of this that there are going to be good days when you feel like a million bucks, and then there are going to be days where just just don't feel well at all. I call it "my adventure" because you never know what the day is going to bring, and sometimes, you just need to roll with it!

  • Breast Cancer, Collective Trauma, and Collective Healing

    September 28th, 2019 was a monumental date. It was the weekend before the pink explosion of breast cancer awareness month takes over the subsequent 31 days. There was anticipation, excitement, hope and support, on the brink of ignition, all coming to gather at the Son's of Italy venue in Braintree, MA. Breast Cancer is a disease that effects 1 in 8 women in the U.S. Chances are, you know someone who has been diagnosed. A breast cancer diagnosis is not isolated to just individual receiving the news; it becomes "we". You see, when someone is diagnosed with breast cancer, life somehow goes up in flames and you are trying with every bit of strength to put out the fire and smoke that ebbs and flows around you. You have cancer, but life still needs to go on. How often do we say, "well, I just don't have time for this right now!" But somehow cancer doesn't care. It has come and it demands attention. We live busy and full-filling lives and somehow, cancer tries to take over. We fight back though with our secrete weapons. We do no let on that we are ill, that we are sick, that we are nauseous. We wear wigs so others do not see our balding heads. When people ask how we are doing, we have the proverbial "I'm fine" response and then talk about the weather. It's either too hot or too cold in New England. It's too humid in the South, or it hasn't rained for weeks in the Southwest. We go on as if nothing has changed when in fact, everything has. We shed tears behind closed doors of our bedrooms and on the floor of our bathrooms so that when we open the door, all they see is our strength, courage, and fearlessness. We Have Cancer While acquaintances my peep into your world and mutter "I don't know who she does it." We don't request sympathy. What we need is community. We need those friends and acquaintances to come out of the woodwork because this is bigger than any one individual can manage alone. Of course it is the individual enduring the treatments, the side effects and the pain, but it is the community that is empathetic, encouraging, a good listener when we need to vent, and a good support system when we are longing for a hug. They become the people we rely on for the small day-to-day tasks that through our eyes are mountains and roadblocks. We are grateful for the helping hand, the childcare, the meals and the strong family and friend bonds that emerge. Collective Trauma Requires Collective Healing What we end up discovering is that our community expands as we meet new people who are experiencing something similar. It is human nature to connect and find commonalities. The breast cancer community is a tight knit club with unbreakable bonds. We find other breast cancer survivors and warriors with whom we share our stories and perhaps even make jokes because we are in a safe space with people "who get it". There is a sigh of relief when we are able to identify another person who is experiencing something similar to us; a connection that triggers solidarity, a feeling of not being alone, of being understood, and someone we can confide in. Community as a Priority It is important, and I dare go so far to say almost required, that we cultivate this community, this space for support, reflection, and healing. That is why one of the founding pillars of Survivingbreastcancer.org is community, because we know its strength and positive influence on those diagnosed with breast cancer and their caregivers, families, and loved ones. To recognize the outstanding work that organizations, groups, and individuals do to build and support community initiatives within the breast cancer field, we established the Survivingbreastcancer.org Trailblazer Award. This honor is announced each year in the month of October and it is with great pleasure and gratitude that this inaugural award is presented to Donna Mayo and the exceptional committee behind Paula's Power. Paula's Power was created in memory of Paula Porcaro. Paula died from Breast Cancer in 1985. Her favorite flower was the Daisy. The nine petals on the flower represent her 3 children and 6 grandchildren. In speaking with Paula's children and grandchildren, it is evident that community played an essential role throughout her life. Paula's Power was founded in 2019 and upholds our core values of community and its importance in a breast cancer diagnosis. As men and women paving the way for strengthening community support in light of disease, please join me in congratulating Paula....x.x....x...x....x.. in being the first recipients of the Survivingbreastcancer.org Trailblazer Award.

  • Why Some Survivors Still Need More Chemo

    These last few weeks have been a bit confusing so I wanted to break down my understanding of what it means when you are told you may need more chemotheraphy. The path was pretty clear since my diagnosis: I was going to receive neoadjuvant chemotheraphy (i.e., chemo prior to surgery), undergo surgery, have 6 weeks of radiation, and end with hormonal therapy. However, my path changed based on the biopsy results from my surgery. We have now added adjuvant chemo (i.e., chemo after surgery) to my treatment plan. I want to take a moment to breakdown what this means and my experience with round 1 of Xeloda (Capecitabine). When you undergo neoadjuvant chemo, you and your doctors are not only aiming for the possibility of the size of the tumor to shrink, but also, for there to be no active cancer cells remaining in the breast tissue, or lymph nodes (if the cancer has spread there). One of the ways your care team is able to evaluate how well you respond to neoadjuvant therapies is by looking at the tissue that was removed during surgery to see if there are any actively growing cancer cells present. If there are no active cancer cells present, this is referred to as a “pathologic complete response” (pCR). It is important to note that the definition of pCR is still debated; some studies conclude that a pCR is achieved when only looking at the breast tissue while other scholars look at the breast tissue and auxiliary nodes combined. As such, it all depends on how your care team is defining and measuring the successful of neoadjuvant chemotherapy. While I am disease-free post surgery (yea! Cancer is removed and all scans came back clear!) doctors did find that there was “residual disease” remaining in the tissue that was removed. While there was success in my neoadjuvant treatment, it was not 100%, and therefore, we want to continue our aggressive treatment plan and proceed with adjuvant chemo, Capecitabine (Xeloda). Luckily, patients with incomplete response to neoadjuvant chemotherapy benefited from Capecitabine! Capecitabine are pills I take twice a day and follow a “cycle” of two weeks on, one week off. After two week on the new chemo, I am happy to report that I am feeling ok. I can confirm that the rumors of this being an “easier” chemo are true. Easier in the sense that you can take the pills in the comfort of your own home. However, I don’t want to undermine the power of this chemo. Overall, I am feeling well but a few noticeable side effects include: Tiredness and fatigue Upset stomach / cramps Overall sense of not feeling well but cannot place your finger on what exactly is wrong Upset GI track Wrist Pain (this could be because of the Aromatase Inhibitors I am on like Anastrozle/Arimidex) The only time I felt nauseous was when I took the pills without food! Remember to take Capecitabine with food! Honestly, these symptoms are manageable. I am still working full-time and able to continue with my health and fitness exercise routine which is my sanity. One of the side effects I continuously monitor for is Hand and Foot Syndrome. This is the most common side effect, but so far, after completing round 1, I am in the clear!

  • Side Effects of Perjeta

    By Jasmine Shukla & Laura Carfang Pertumuzab Perjeta (also known as Pertumuzab) is an antibody used mainly in combination with Herceptin and Taxotere and/or Taxol, for treating the metastatic Human Epidermal growth factor receptor 2 (in short, HER2)  positive breast cancer. According to Soleja and Rimawi (2016) 15-20% of breast cancers have an over-expression of the HER2 protein. The antibody has a monoclonal nature, meaning it is composed of exactly similar immune cells that are clones of an individual or distinctive parent cell. It can also be used in the same amalgamation as a neoadjuvant therapy in early HER2-positive breast cancer. Perjeta is classified as a cytotoxic ( anti-cancer) chemotherapy drug which functions as an antineoplastic agent, thereby preventing or inhibiting development of a neoplasm/tumor. HER2 must be responsive to the drug for it to be effective and to ensure HER2’s responsiveness, four types of tests are conducted before starting to use it for  treatment. Testing for HER2 ImmunoHistoChemistry (IHC) : is used to check the amount of HER2 receptor protein present on the cancer cells surface. Fluorescence In Situ Hybridization (FISH) : tests whether the cancer is HER2-positive giving more accurate results than the IHC, but is comparatively expensive and takes more time to yield results. Subtraction Probe Technology Chromogenic In Situ Hybridization (SPoT-Light HER2 CISH): looks for the number of copies present in the tumor cells of HER2 gene present for a single tissue sample of breast cancer and is also simpler than the previous two mentioned. Inform HER2 Dual In Situ Hybridization: uses a special kind of stain that can make the protein of HER2 change its color and can also be used on samples of tissues stored in wax or any other chemicals.  It is also less expensive and gives precise results. Cells that spread cancer usually grow in a very uncontrolled manner. A Perjeta drug presence on the surface of such cells blocks the signals of HER2, therefore either slowing down or stopping the growth of breast cancer. Moreover, it alerts the immune system in order to destroy the cells onto which the cancer cells have attached. Side Effects of Perjeta Even though Perjeta is quite helpful in fighting breast cancer, there are certain side effects related to it. The most common side effects observed in women, due to the use of Perjeta, is a condition of a low white blood cell (WBC) count which is also known is neutropenia, followed by nausea, fatigue, hair loss, rash, and numbness or tingling or burning in the hands or feet (known as peripheral neuropathy). Perjeta also may contribute to heart problems, which can be with or without displaying of any symptoms, such as reduced heart function or congestive heart failure respectively; this is one of the most serious side effects of taking this drug. In addition, taking Perjeta at the time of pregnancy may result in the demise of the unborn child or lead to certain birth defects, which suggests that birth control pills should be taken while undergoing this treatment.  Another possible negative impact of Perjeta occurs when the body is allergic to it. In such cases consequences may be fatal as it quickly spreads throughout the body, affecting many areas.  As Perjeta is injected directly into the vein, it could result in infusion related fatal reactions. In conclusion it is dangerous to take Perjeta without proper consultation or even by ignoring the side effects until it aggravates and gets serious. Therefore conditions must be thoroughly investigated beforehand and all patients must experience a variety of blood and body tests prior to injection to verify and test Perjeta’s suitability and necessity. Interested in learning more, check out Laura video undergoing treatment:

  • Genetic Testing for Cancer- What You Need To Know

    By Madhumitha Sabhanyagam & Laura Carfang Genetic testing. Two words that you have probably heard a lot over your breast cancer survivor’s journey. What exactly is it and how does it concern you? Why is it important that you get tested and why are there conflicting conversations surrounding the topic? These were some of the questions I had walking into the podcast interview with Fatima Amir, a Genetic Counselor at Dana Farber. (Make sure to catch the really informative podcast with Fatima on our website and subscribe to Breast Cancer Conversations where ever you get your podcasts!) The study of genetics or the first genetic screening began in the 1930s. Since then the constant evolution of medical technologies has made genetic testing quite accessible and much more accurate. Genetic testing is a type of medical test that identifies changes in chromosomes, genes or proteins. Genetic testing in adults and children usually involves taking a sample of blood from a vein or tissue. They are all designed to identify a particular gene that may cause a genetic disorder. There are various forms of testing and these tests can be conducted in different stages of your life and for different diseases. So how does genetic testing concern you? If you have been diagnosed with breast cancer, genetic testing can help you understand if there is a history of breast cancer in the family and if there is a possibility of other family members inheriting a genetic mutation predisposing you to cancer. If you do not have breast cancer, genetic testing can help inform you of your own cancer risk. With this knowledge, you can decide to take the action that is best suited for you. Prophylactic Double Mastectomy The spotlight on genetic screening for breast cancer was cast when Angelina Jolie publicly shared her experience of being genetically tested positive for the BRCA1, which sharply increased her risk of developing breast cancer and ovarian cancer. She then decided to get a preventive double mastectomy procedure. Since then more women have opted to get tested, to know their treatment and preventive options usually opting for a prophylactic double mastectomy. Breast Cancer Genes List The more information you have when considering breast cancer genetic testing, the better. Most inherited cases of breast cancer can be traced to the mutations in two genes: the BRCA1 (BReast CAncer Gene 1) and the BRCA2 (BReast CAncer Gene two). There are also some high risk gene mutations that have been linked to breast cancer. These include the PALB2 (partner and localizer of BRCA2) gene, the PTEN gene, and the TP53 gene. There are two additional genes mutations that pose a high to moderate risk: ATM and CDH1. The ATM gene helps repair damaged DNA while the CDH1 gene helps cells bind together to form tissue. Additional testing may be ordered by your genetic counselor for: BARD1, BRIP1, CHEK2, NBN, NF1, RAD51D, RAD51C, STK11, MLH1, MSH2, EPCAM or PMS2 genes. Choosing or not Choosing Genetic Testing Like any hard decision that we have to consider, there are two sides to this difficult choice as well. Testing can be overwhelming. There are a plethora of tests that can be carried out. Waiting for the result could cause anxiety and undue stress. Sometimes the tests may not even give you a conclusive answer. For example, one of my genes came back with what is termed a "variants of unknown significance" meaning that there is not enough data at this time to conclusively say if the gene is positive or negative. In this case, genes that come back inconclusive are treated as if they were negative and my treatment plan and surgical decisions reflected that. Breast Cancer Genetic Testing Cost Genetic testing is not cheap and while procedures to undergo genetic testing only require a blood test, the decision is not easy. For those with insurance, genetic testing could range anywhere from $300 to $5000. This wide range is laregely dependent on what type of testing you are having and whether you are testing only one gene or multiple genes. Although the price can be steep, there are several genetic labs that do offer financial assistance for those who qualify. Ethical Considerations Ethical complications of asking a family member to undergo the screening with you are also substantial. Family members could be unwilling to take the test or undergo the test and not be able to cope with unexpected results, causing tension within the family dynamic. To some, negligence is bliss and we have to respect their decisions all the same way. Is Genetic Testing Worth It? Undergoing genetic testing has its benefits as well. You would your likely hood of getting cancer. True, it is not a certain fate but it does give you the knowledge to help you get prepared. One of the benefits of genetic screening is the fact that early detection of any type of disease or disorder is usually much less expensive when it comes to the treatment of that disease. Genetic screening also helps people that know a heritable disease runs in their family. We are not just talking about breast cancer either! You can be screened for up to a panel of 80+ genes! This means, for example, if you know that you may have a predisposition to colon cancer, your doctor may recommend starting screenings at an earlier age. Knowledge is power. But only in the right hands. We also need to bear in mind that the information you receive from genetic testing is presented as an overall lifetime risk. It is critical that you discuss your results with your genetic councilor. We have barely scratched the surface of genetic testing. I am sure, you have so many more questions. The right person to answer the questions you have is your genetic counselor! Lookup a genetic counselor that best suits your needs and explore your testing options. For more information on genetic testing click here or tune into our frank and extremely informational podcast interview with Fatima Amir and see some of your questions being answered! Till then, keep thriving my friends!

  • An interview with Laura Carfang, Executive Director of SurvivingBreastCancer.Org

    Originally published by Dependable Cleaners here. In honor of October being Breast Cancer Awareness Month Dependable Cleaners wanted to put the spotlight on an entrepreneur making strides to support those who are and have faced a breast cancer diagnosis. So here we are! The spotlight is turned inward so here we go! Laura Carfang started SurvivingBreastCancer.org as a platform to provide support, education, and a community for those that have been diagnosed and their caregivers. Laura took her personal journey with breast cancer and turned it into a way to inspire, encourage and support others. As Executive Director she has set out a vision and is a strong believer that everyone’s voice should be heard. We spoke with Laura to learn more about her journey and her vision for SurvivingBreastCancer.org How can we offer support and compassion to both individuals fighting a breast cancer diagnosis and survivors of breast cancer? There are various and sundry ways family, friends, and caregivers can offer support to those diagnosed with breast cancer. I think the most important thing to keep in mind is that everyone is different, so take the time to ask the person what would be helpful to them. You may think it is helpful to bring over food, but a person diagnosed with breast cancer may have a particular aversion to certain foods due to the side effects of the chemotherapy; some people lose their taste buds, others may develop mouth sores – making meals a challenge and a reminder that they are ill. One thing I noticed is that everyone has an opinion when it comes to your health care. Unless the person with breast cancer is asking you to recommend a doctor, or specific advice, sometimes these options are better kept to yourself. Finally, going back to the first point, I think it is also important to ask the person what their boundaries are, how open they want to be about their diagnosis, I.e., which family members get all of the details and which people get the high-level updates. In my experience, my boyfriend and caregiver came to all of my appointments and he was the one family members were able to call and ask questions allowing me to catch up on much needed rest. What are some key initiatives SurvivingBreastCancer.org is working on this coming year? We have some exciting plans coming up this year. We are transiting to more of a virtual platform to enable our organization to help as many people as possible. Secondly, we are seeking grants, corporate sponsorships and cause related marketing alliances that will enable us to work full-time for the non-profit. Was there a specific moment in your breast cancer journey that set the stage for what you wanted the mission of your organization to be? Absolutely! Living in Boston, one of the world’s great health care Meccas, and being a major metropolitan city, I thought it was going to be easy to find other women, similarly diagnosed with breast cancer and make connections. I honestly thought that if I typed into google “breast cancer survivors in Boston” I would find a thriving community ready to connect and share their experiences. In hindsight, I guess I was looking for a breast cancer mentor so to speak. Boston offers several support groups and forums which are great resources, but they are usually spearheaded by the hospitals. However, if you are working, it is hard to attend weekday afternoon sessions. It was through my own experience navigating breast cancer that I launched my 501(c)(3) non-profit, Survivingbreastcancer.org. I wanted to create a virtual platform that provides community, education and resources for those diagnosed with breast cancer and their caregivers. A breast cancer diagnosis does not end when treatment ends, there is a lot of aftermath that comes with it. If you are diagnosed with early stage breast cancer, you are never truly 100% “Cancer Free.” Oncologists use the term “No Evidence of Disease” or “NED”. There is always a lingering fear that the breast cancer may return. That is where our organization comes into play. We are there when your medical care team says they will see you in 12 weeks, or 6 months or next year, and PTSD slowly creeps into the fabric of your life. This is when the community and support systems are needed the most. Tell us about a mentor who has been influential to you as a leader. I have to say that my mom and dad have been my biggest mentors and influential leaders. They are my rock! I am very fortunate to be very close with my family. My father started his own business in the financial industry 35 years ago, so in a sense I’ve grown up around entrepreneurship. From a young age I was exposed to the dedication and hard work that goes into running a business and that the hours are hardly 9-5. My mother works in the healthcare sector. I remember early on, she would find opportunities to educate her patients and their families. She incorporates nutrition and lifestyle medicine in her approach making it easy for her clients to understand the complexities associated with illness, food allergies, and autism, for example. She now leads the Carol Carfang Nursing and Healthcare Ethics conference where leaders, educators, and philosophers come together to discuss the most pressing issues in the field. I guess you can say, it’s in my genes and I couldn’t be more grateful for the mentorship and leadership I receive from my parents. Do you have any tips for entrepreneurs to help them maintain a healthy work/life habit? Most entrepreneurs will tell you that you have to have an unwavering passion for and belief in the work you are doing. There are times when entrepreneurship can be quite lonely. There are moments of doubt and insecurity along the way. However, it is in those moments that I remind myself, “if it were easy to put your life and souls’ work out there to be a success, then everyone would do it.” It takes a specific mindset and drive to be willing to take chances, to be judged (because everyone has an opinion), and to risk failure and still persevere, that distinguishes an entrepreneur. The work/life balance is a challenge and it comes down to prioritization. A simple black and white question I ask myself is, will this give me joy, will this help me get from point A to point B. And if the answer is “yes”, then it is worth doing. If the answer is “no”, then I move along to the next thing. The other technique that I use is dedicating one day a week for “me-time”. I have chosen Monday as that day where I do not book meetings, schedule podcasts, or work on blog posts. For me this is a guaranteed day where I can find a yoga class, go for a run, grab a dinner with girlfriends, or simply sit on the couch in pj’s and scroll through social media posts. Whatever you need to do to unwind, relax and refresh, it’s important to carve out that time each week. In the work that I do running a non-profit, I am reminded that it is not a race but a marathon. Like all non-profits, we are called to solve some of the world’s most challenging problems. We are not going to cure breast cancer tomorrow. However, if we can help one person, move the needle one point, and provide support, education and community to those diagnosed with this disease, then I know we are going in the right direction. Thank you Dependable Cleaners for publishing our story and supporting breast cancer awareness, programing, and resources. Want to learn more about Laura's story, here are some additional features: Channel 7 News & On the Podcast

  • Advice From a Survivor

    By Store My Tumor The most common statement we receive from people we talk to is… I wish I knew about the importance of preserving cancer cells alive at the time of my surgery. Why didn't my doctor talk to me about the option of storing my tumor tissue? Doesn't he understand my survival is everything? I have a family that I need to be here for! To answer that question- most doctors are always going to go with the standard of care treatment- surgery, chemo and radiation. They have no time and this is what they are taught to do. Anything aside from that is not known to them and they don’t want to go outside the norm. This is why a patient must take control of their own treatment. If you have a doctor that you feel you aren’t getting the right answers from, then find a new doctor. If you feel your treatment plan isn’t right for you, then ask questions. You need to be a part of your treatment plan so that you feel included in your survival and can help to ensure it. The standard of care is okay for some people but not for all. If you feel you want to take control of your treatment and personalize a treatment that is just for you then you need to do some research. StoreMyTumor can help you preserve your cancer cells and tissue alive and initiate a number of advanced diagnostics and personalized immunotherapies for example. Did you know? Hospitals routinely discard tumors post-surgery, or they may save a very small piece of the tumor preserved in paraffin, which will not keep the cells alive. StoreMyTumor preserves your cancer cells and tissue in a live, viable format. Patients can store tissue collected from a surgery or biopsies, or fluid from ascites drainage (paracentesis). Call them if you are having a procedure that may involve removing tumors or cancer cells. What are the preserved live cells or tissue useful for you ask? · Sensitivity Testing (diagnostic) - tests which drug or combination is most effective to target the tumor. Can be done for chemo therapeutic agents only, or a wider range of drugs that include chemo, targeted, and immunotherapy. This eliminates the trial and error process doctors go through and the severe side effects that accompany the wrong chemo and drug. Applies to all indications and requires Viable tumor tissue. · Genomic Sequencing (diagnostic) - checks for hundreds of mutations on the tumor and matches the right drug to mutations expressed by the tumor. Applies to all indications and requires formalin or paraffin tissue (fixed/dead). · Personalized Vaccines (immunotherapy) - stimulates the immune system to recognize and fight the cancer cells. Good to clean the body from residual cancer cells after surgery/chemo. Applies to all indications. Available in trials across the USA and internationally. Applies to all indications and requires Viable tumor tissue. · Adoptive T-cell Transfers (immunotherapy) - multiplies the army of killer T-cells that already recognize the tumor to dramatically boost the immune system’s ability to destroy the tumor. Available in trials across the USA and internationally. Applies to all indications and requires Viable tumor tissue. Personalized medicine is transforming our thinking about designing effective treatments. If you have questions, you can also set up a time for them to give you a call. Knowledge is Power! Know All Your Options! Take control! Thanks to StoreMyTumor for sharing this blog with out community!

  • Pertuzumab, Trastuzumab, and Docetaxel: A Common Language

    What do 1000 people this past weekend all have in common? CANCER. Cancer unites us, but the Weekend of Hope ignites us. This past weekend, 1000 people gathered in the Green Mountains of Vermont to retreat, inspire, learn, laugh, and feel a common connection and bond. Living daily busy lives, managing work, children, and running errands, force many to throw on their wig, a smile, and muster up the energy to go out into society. When someone asks how are you doing, the reply is a cordial “I am fine”, followed by a silly excuse to exit the uncomfortable situation as quickly as possible. This weekend, to those pointed and difficult moments, Survivingbreastcancer.org’s response was: “But aren’t we all just fine”…..People stopping in their tracks to share every detail, every blistering moment of the experience, the heartfelt agony that accompanies a cancer diagnosis. A woman who was not diagnosed under the unifying umbrella of cancer, came to the conference as a caregiver. She was broken. You could see it in her stance as she leaned in, she knew she had come to the right place, she needed empathy, compassion and support. A caregiving community. Survivingbreastcancer.org was exhibiting at the Weekend of Hope. As people flooded the exhibit booth, Laura, founder and executive director, alongside William, caregiver and board member, asked the pointed questions, “how are you”; “how far out are you” referencing the time someone was last in active treatment, or first diagnosed. When asked, “what’s going on these days” is followed by the swelling of tears because the person answering can finally respond to the question in full honesty, acceptance, and unbiased judgment. The natural response always comes out first, because of course, strangers want to put their best foot forward: “I’m doing fine”. Followed by that awkward smile… But they don’t walk away. There’s that stagnant pause just hoping for the silent life line, that acknowledgment and that permission to tell the listener what’s really going on. Words like Trastuzumab or Pertuzumab, T-DM1 and CDK4 & 6 inhibitors are not part of a foreign language, but rather, is the language. This is community. This is support. This is Survivingbreastcancer.org’s experience at the Weekend of Hope. Welcome to the community. Xo, Laura

  • Living Beyond Breast Cancer: A Conference Recap

    Each year the Living Beyond Breast Cancer (LBBC) organization hosts an extraordinary conference. This year's theme was “Sharing Wisdom, Sharing Strength”. There were over 400 attendees, 4 dozen exhibitors, 4 pre-conference networking opportunities, and 11 sessions, all packed into a day of learning in Philadelphia, PA. Some of the topics I’d like to highlight here are: Sex and Intimacy, Connections, Late Stage Breast Cancer, and Knowing Your Body. Sex and Intimacy was a hot topic that bubbled up among younger woman and early stage breast cancer patients. We hear all the time from younger women diagnosed with breast cancer that they have a unique set of challenges, questions, and experiences. Their concerns differ compared to older women who have been diagnosed with breast cancer and who have had the opportunity to start a family and may have already gone through menopause. Being thrown into menopause, due to chemical/hormonal treatments (such as Zoladex, Tamoxifen, or any of the aromatase inhibitors accompanied by a Lupron shot), may hasten several deleterious side effects, I.e., hot flashes, bone loss, weight gain, and vaginal atrophy. These recurring issues invite us to take a deeper dive, build a community around like-minded individuals, and offer resources and support. We were most fortunate in that we were able to record a podcast with notable Breakout Session Speaker Dr. Monique Gary, DO, MSc, FACs on this most apropos subject matter. This podcast will be available on “Breast Cancer Conversations” in the coming weeks (found by searching ITunes, Spotify, SoundCloud, etc). Following the LBBC Conference, we hosted a Breast Cancer Survivor/Thriver brunch where we got to meet a number of women under forty who opted not to harvest and preserve their eggs. This was due primarily to their cancers being so aggressive and their oncologists suggested starting chemotherapy immediately. It's a very personal choice for everyone. No regrets were expressed and most held onto the acceptance that there are other ways to start a family. For those of you who are looking to start a family, it is important to have this conversation with your oncologist and fertility team so that you can plan ahead and make the best decisions for you. If the question about family planning doesn’t come up in your initial conversation, bring it up! It’s your right! Making Connections. It's important that we share stories of those who have been diagnosed with breast cancer. A breast cancer diagnosis can be quite lonely (see related blog post here). You may have an abundance of support from family and friends, but what we’ve come to realize is that unless you are going through it yourself, it is hard to relate to and understand what it is we are actually going through. At the LBBC Conference, there was such incredible energy. You could approach anyone and immediately dive into a detailed conversation about your diagnosis, treatment plan, and lingering questions without needing to start from the very beginning (and without having to explain the definition of every term). Late Stage Breast Cancer. I felt privileged to be able to speak with women who are living with advanced/late stage breast cancer (i.e., metastatic breast cancer or MBC). These conversations highlighted many different issues. There were many notable concerns and needs compared to the conversations we held with the "early stagers". Women had an opportunity to check a box for what the biggest concerns were and unanimously no one checked the box for sex and intimacy. That topic did not play a significant role. Similarly to younger women who express unique needs and concerns, these women also shared a similar sentiment. The hot topics of these discussions were: How to manage the good and the bad news Navigating Death (your own or others) Understanding Mortality And here a most salient notation from the above referenced conversations: What strategies can we utilize when members of our community pass away because there is no cure? Oncologists may tell you that your disease is not curable but it is treatable. However, the realities of the prognosis weigh heavily on those diagnosed and their loved ones. The beauty that emerged from these back and forth conversations was the appreciation of every detail of life, I.e., feeling the warm sun hit our faces, the taste of ice cream on a summer afternoon, the smell of pine cones in winter, or the beauty of watching the seasons change. Everyone agreed that "life is just different now". This week’s Survivor Story. Kandace M. shares her breast cancer story with us. Her experience brings a lot of these themes together. She is young. Her breast cancer has metastasized. In her first life she was a marathon runner who qualified for Boston. In her second life, she is a conquering stage IV breast cancer. Know yourself and your body I know many of us consider ourselves to be healthy, we eat well, we have started to follow a more plant-based diet, and we exercise regularly. But even without a genetic mutation, breast cancer can strike (only 10% of diagnoses can be attributed to a genetic predisposition). It may be living within us long before symptoms surface (if they ever do!). You know yourself the best. If something does not feel right, get it checked out, be it a headache, bone pain, or lumpy scar tissue. Know that medical professionals want to be encouraging and tell us not to worry. Sometimes they will not give us the service we are seeking, like a scan or blood test, to give us peace of mind. But if there is a key take-a-way from the LBBC conference this year, it is that “we know our bodies the best and persistence is key. If your doctor thinks your symptoms are "nothing", or that "you are too young to have breast cancer", or that "you have no family history" etc., be encouraged to advocate for yourself, get a second, third, or fourth opinion until you find a doctor who will listen to your intuition and partner with you on your medical journey.” XO, Laura

  • What Not To Say To Someone With Cancer

    Silence is Golden By Jeff Neurman Last week, in this tiny corner of the world wide web (does anyone call it that anymore? And when did they dispense with the need to type “www”?), I wrote a public service announcement in the form of some useful cancer terminology for people to know. Since everyone either has cancer or knows someone who does (a truism I am “borrowing” from the great podcasters at Thanks Cancer! (@ThanksCancer)), it seems that people should have some idea what all the buzz is about. Of course, that was just a short blog post and the world of cancer is vast, so I will have to take pen in hand again (another anachronism) to expand upon my list in the coming days. In the meantime, however, I wanted to issue another PSA (which also deals with the other type of PSA). You see, as important as it is to be able to intelligently converse with someone who is dealing with cancer, it is of near-equal importance to understand the many things that those of us with cancer would really prefer if you did not say. Now, before anyone gets all flustered and starts accusing cancer warriors /survivors /endurers /not-dead-yetters of being hypersensitive, allow me to offer the following: First, as a reminder, we have cancer. Second, just as everyone’s cancer behaves (or misbehaves) differently, so too does everyone afflicted by it have a different level of sensitivity about what can and cannot be said. This admittedly makes it a bit tricky, since one never knows how any particular person may respond to the usage of certain words. That makes for a lot of gray, and if there is one color that people do not like it is gray (except, currently, in their living spaces where it is a fashionable paint choice). To hopefully cut down on the anxiety that those attempting to speak with someone with cancer might experience in light of this, I have tried to not only list the words and phrases that are a bit sensitive but to put some context around them. A disclaimer: No one is accusing anyone of having anything but the best of intentions, but we all know where the best of intentions can lead (assuming one believes in Hell, which I think is a personal choice). • “Trooper”: Unless the person suffering from cancer is wearing a beanie and offering to sell you some Samoas or is sporting a sash while trying to earn the Emergency Preparedness badge, I suggest staying away from this one. Facing cancer is not equivalent with being a member of the state highway patrol or somehow enlisting in a private army of one. • “You’ll Be Fine”: I know of someone who is by all accounts clairvoyant. And although she knew I would say that before I did, she is sadly not an oncologist. Sure, the intentions behind this one, like basically all of these no-no’s are well-meant, it nevertheless feels rather dismissive to someone to have all of their very real fears and anxieties and concerns whisked away by a cavalier three words (one of which is a contraction, for crying out loud) as it suggests that those fears, anxieties and concerns are not justifiable. Well, we would like to think that the utterer of this no-thinker is correct, but to do so we are going to need to see a functioning crystal ball or, at minimum, some proficiency with Tarot cards or a Ouija board. An additional word of caution on this term: The more closely-related that the speaker of it is to the intended audience the less appropriate it becomes. Just because a close family member cannot deal with the reality that her child has cancer does not give her license to say it will all be fine, particularly while in the middle of the third day of one’s second round of chemo infusions while all that infuse is trying to do is nurse some ginger ale and keep down a couple of saltines. (This is just a hypothetical, of course.) • “Don’t Worry”: I will admit that worrying is not generally a productive use of one’s time, particularly when that over which one is worrying cannot be controlled. Nonetheless, to suggest that someone who has a potentially (if not likely) life-truncating illness should not worry is just a teensy bit Pollyanna-ish. Sure, some people just accept whatever comes their way. Good for them. Many of us, however, are a bit less blasé about having cancer. If we want to worry about it, then dammit we will. • “Good Cancer”: If ever there were an oxymoron . . . . I am not an oncologist (by training), but thanks to all of my worrying (see above) I am pretty confident that any type of cancer can kill you. And although we do live in a very competitive world these days, I do not think that it is particularly productive to rank cancers based on their potential lethality. Thus, since they all suck, let’s not try to rationalize that any of them are good. They are not. That is why they are used in tandem with the term malignant, which means, if I may paraphrase, “bad.” • “Be Thankful”: It will come as a great shock to many, but one can hold two differing thoughts in the brain at the same time. Or, at least some of us can. I am thankful every day for my sons, my wife, our dog, my parents, my in-laws (but don’t let them know that) and many other things. But I was thankful for all of that before I learned I had cancer. I don’t need a potential death sentence to be thankful, just like I don’t need someone telling me to be so. • “Seize the Day”: Okay, okay. No one has actually used this exact phrase with me, but that is largely because I do not hang around people that use such lofty phrases or, similarly, read obscure books by Saul Bellow. But I know sooner or later that someone is going to say that – or something even more obnoxious like carpe diem (Latin is rarely appropriate in polite conversation) – so I just want to go on record now saying don’t do it. The preceding has been a courtesy notice for those who would otherwise potentially stick a foot in a mouth. It is only a partial list, so check back here regularly for future updates as they are foolishly uttered to me and my many friends with cancer. In the interim, if you are uncertain if what you are tempted to say is kosher or not, just keep it to yourself. You can be silently supportive without offending anyone. Practice your sympathy eyes.

  • Unsolicited Advice

    By Jeff Neurman https://itsinmyblood.blog/ I recently celebrated my sixth anniversary of having been diagnosed with cancer by not having yet died from it. Similarly, it is a little less than a year since I, in an effort to accomplish the not dying part, subjected myself to months of chemotherapy, from which I also did not die (but experienced a couple of episodes when that looked like the preferable outcome). And while I am of course immeasurably grateful to still be vertical, I must admit that I think the years of living with cancer and the ramifications of the treatment for it are starting to grate on me. In the last couple of weeks, I have written blog posts in this space that I believe reveal my increasing annoyance with cancer. The first, On (Cancer) Language (https://itsinmyblood.blog/2019/07/11/on-cancer-language/), was a bit of rhetorical flourish for the uninformed that seem to inhabit every cancer-ites orb. Similarly, but with a bit more bite, last time out I wrote about things not to say to those of us with cancer. It occurred to me that merely telling people what was okay to say was not going to be adequate. Let’s face it: Some people just need practical advice. Consequently, I posted Silence Is Golden (https://itsinmyblood.blog/2019/07/17/silence-is-golden/). Unfortunately, not everyone seems to read my vital blog, including certain people who are close to me. (When I say close, I may or may not mean that they are blood relatives. Hint, hint, wink, wink.) This is not necessarily their fault as I am not confident that some of these unnamed people know how to actually use a computer. Technological savvy is not a prerequisite to be in my circle, as I don’t hold others to a standard that I cannot maintain for myself. I only realized belatedly, however, that my essential posts above were not getting through to all of the right people when I received a message from one such person. This message, which arrived in the form of an email (so I guess someone does know how to use a computer after all), was an unsolicited missive directing – not suggesting or even requesting – that I look into some unheard of doctor. Helpfully, the instructions provided not only the doctor’s website but his phone number, which I quickly realized was not a U.S. phone number. I have nothing against non-U.S. doctors whatsoever, but I happen to be based in the United States. So there is some element of a convenience factor at play. The message went on to “inform” me that this doctor is really more of a consultant. I was puzzled by that terminology. What does that entail? Does that mean the doctor actually just charges one for thinking about one’s issue but actually does nothing? You know, consulting. Although I feel as though I already spend way too much time with doctors (U.S.-based) as it is, I do like a bit more of a hands-on approach. I think an occasional lymph node check or a look at my lingual tonsils (which is really just another form of lymph node check), although physically awkward, is probably a good idea. Of course, the directive did not end with the instructions to make my international phone call. I was also informed that this doctor’s big thing is “diet.” I realize this is a touchy subject with many cancer sufferers. Some people swear by a diet change while others think it is a red herring (and I am pretty sure herring is a fatty fish and thus not on the approved diet). I must confess I am a bit skeptical that merely by changing my dietary habits I am miraculously going to be cured of my otherwise incurable cancer. And while I am not the world’s best eater, I already eat a pretty healthy diet. Tonight, in fact, I think we will have tofu on the grill. Of course, too much soy can apparently cause cancer as can grilling, so maybe I am not too healthy after all. Nonetheless, if diet were the key to being cancer-free, I think I eat well enough that I should be. But, as you may have noted, I am not. If I were, I would have much less to blog about. Finally, perhaps to further attempt to persuade me of the prudence of this approach, the email sender informed me that a good friend is a dietitian who could create a diet for me. I do not doubt the motives of this undisclosed directive giver, but I can’t help but wonder if s/he thought this could be a win-win: I can cure Jeff of cancer and get my friend a new client! Joy! What my unsolicited message writer seems to fail to notice is that I am already surrounded by countless people who do actually know what they are doing. This group includes MDs, DOs, PAs, NPs, RNs, LPNs, MAs, RDs, and the occasional PhD and LCSW, the last for when I have had too much of dealing with all of the prior. Each of the above has his or her place, even if the occasional MA did not know my right arm from my left – I get it, it’s confusing because it is backwards when facing the patient. Like looking in a mirror and having a cancer patient staring back at you. Do these people have all of the answers? No, sadly. But have they collectively put me into remission for the time being? Yes, happily. Thus, when someone close to me comes along and acts as if s/he has a solution that I did not think of that would be so much better than what I have done already (note also that these suggestions might have been more useful before I underwent treatment), it is a most unwelcome message. As this person well knows, my wife is a doctor, we live in New York where there are many specialists in my type of cancer and, surprising as this may seem, we actually did give some thought to my options before deciding on them. And as delicious as a diet comprised solely of turmeric-coated non-GMO kale and green tea with organic Meyer lemon sounds, I am pretty sure that if I had used that as my silver bullet for cancer it would have had the same impact on me as any other bullet. It may be hard for those without cancer to understand since, of course, people who care about you only want to be helpful. And one can’t fault them for that, nor should one. Certainly this particular person loves me and wants nothing but the best for me. But before firing off half-baked schemes involving international doctors and facile fixes, consider perhaps how much thought has already gone into getting me to this point. If you are not sure, then perhaps just keep it to yourself. As I said last week, silence is golden.

  • The Remarkable Medicinal Qualities of Laughter

    By William Laferriere A few years back my girlfriend was diagnosed with Breast Cancer at the tender age of 34. I went into overdrive and performed my due diligence as a Caregiver. I purchased a TV (we hadn’t owned one for years). Now you may be asking yourself - What? All of my research indicated that laughter could play a significant role in the healing process, and that improved health and wellness in general, could be considerably enhanced by laughter. Ergo, the TV. Understandably, it’s quite difficult to find positivity and levity in a breast cancer diagnosis, but I felt then, and still strongly believe, that comedic relief and positivity should play an indispensable role in one’s treatment. In this blog we publish links and argue in support for the positive medicinal qualities of laughter. A recent study by the Mayo Clinic found the following: “Whether you're guffawing at a sitcom on TV or quietly giggling at a newspaper cartoon, laughing does you good. Laughter is a great form of stress relief, and that's no joke.” A good sense of humor can't cure all ailments, but data is mounting about the positive things laughter can do. Short-term benefits include organ stimulation, endorphin release, cools down the stress response and actually can decrease your heart rate and blood pressure. Long-term effects include an improvement to your immune system (positive thoughts can actually release neuropeptides that help fight stress and potentially more- serious illnesses), relieve pain and increase personal satisfaction. Humor lightens your burdens, inspires hope, connects you to others, and keeps you grounded, focused, and alert. It also helps you release anger and forgive sooner. With so much power to heal and renew, the ability to laugh easily and frequently is a tremendous resource for surmounting problems, enhancing your relationships, and supporting both physical and emotional health. By seeking out more opportunities for humor and laughter, you can improve your emotional health, strengthen your relationships, find greater happiness—and possibly add years to your life. Laughter is the Best Medicine - And laughter really is contagious—just hearing laughter primes your brain and readies you to smile and join in the fun. The link between laughter and mental health. Laughter stops distressing emotions. You can’t feel anxious, angry, or sad when you’re laughing. Laughter helps you relax and recharge. Stress relief from laughter? It's no joke Laughter enhances your intake of oxygen-rich air, stimulates your heart, lungs and muscles, and increases the endorphins that are released by your brain. Activate and relieve your stress response. A rollicking laugh fires up and then cools down your stress response, and it can increase and then decrease your heart rate and blood pressure. Laughing Therapy: The 7 Health Benefits Of Laughter 7 Health Benefits Of Laughing Therapy Whether you believe in the healing power of humor against illnesses or not, practicing laughing more often will leave you uplifted and refreshed; plus, in the light of laughter everything always looks a lot better! Laughter: Good For Your Health - "Laughter", Provine believes, "is part of a larger picture. Laughter is social, so any health benefits might really come from being close with friends and family, and not the laughter itself". Laughter Meditation: 5 Healing Benefits In fact, laughter can actually alter dopamine and serotonin activity in your brain, offering a noninvasive and non-pharmacological option for dealing with stress and depression. Next time you’re feeling overwhelmed, make time to practice laughter meditation and harness the power of its healing benefits. Emotional Release 6 Reasons Why Laughter Is the Best Medicine | The Chopra Center Studies have found that laughter can have healing properties; and it’s contagious. Here are six reasons why you should start laughing today. Laughter is Contagious. The discovery of mirror neurons—what causes you to smile when someone smiles at you—gives credence to the belief that laughter is contagious. In our research, above is a short video you can follow along with and learn to make yourself laugh instantly! Give it a try and let us know if you were able to achieve a deep belly laugh in the comments! Keep smiling, laughing, and celebrating life!

  • Don't Sweat the Small Stuff

    By Caitlin Edmunds, Contributing Editor Cancer sucks and there's no denying it. It took a lot from me... it took my energy, my attention and focus on most days if not all days, my naivety, my time and a whole lot of my hair (which in all honesty was one of the hardest parts). But it also gave me a new found appreciation for each and every day. To stop and enjoy all the little things and realize that life is too short to be mad at the crappy driver in front of you or stress over the one email that you didn't get to but meant to before leaving the office. It taught me that the human body is an incredible thing, and the amount of trauma and hardship it can endure and bounce back from is incredible. It taught me that I am way stronger than I ever gave myself credit for. But most importantly it showed me that my tribe is the best tribe. It was 234 days from diagnoses to my last day of active treatment... 130 cold cap changes, 120+ self injections, about 50 doctors appointments, 30 rounds of radiation, 25 blood draws, 20 doctors, 18 ultrasounds, 8 rounds of chemotherapy, 4 lymph nodes removed, 3 MRIs, 2 port surgeries, 1 full body PET scan, 1 CT scan, 1 egg retrieval surgery and 1 lumpectomy surgery. My life will never be the same and forever more will be split into BC and AC (thats after cancer, not Adriamycin for my cancer folks). Since I found my lump through an at home self-exam and have made it my ongoing mission to bring awareness and education to other young women out there. I am so lucky to have found so much love, support and inspiration throughout the entire cancer community, but especially the triple negative gals! Here is a link to my Caring Bridge site that I used to update family and friends: https://www.caringbridge.org/visit/caitlinedmunds/

  • Vaginal Atrophy is a Real Struggle

    Written by, Angela Duncan M.S. and Mary Jane Haake, CPCP More information and products can be found at Hip Hemp, LLC. Am I the Only One? Studies show that up to 50 percent of women suffer from a lack of vaginal lubrication. The condition is not limited to menopausal women and can be experienced at any age. The good news is you’re not alone and this condition is treatable. Although society is slowly focusing of women’s intimate health issues, there is a long way to go. Studies conducted in 2014 show that of the 64 million postmenopausal women, 32 million suffer from vaginal atrophy. Since women’s intimate problems have been taboo, more than half of these women did not know that their symptoms were caused by menopause or hormonal changes and that their symptoms can be treated and reversed. Other studies conducted show that nearly three in five women have experienced dryness and painful sex. The problem is that nearly 43% of women who have these symptoms will not reach out, or they do not have a place to turn for advice about age or hormone related changes to their body. Without the comfort of talking about intimate health, some women may not know what is a normal symptom and how to treat it, or when should they stop keeping their secret and talk to someone about an easily treatable problem. Education and encouragement are just a couple of ways to help make social taboos of women’s intimate health a thing of the past. Vaginal atrophy is a real struggle that many women of all ages face on their own. Women staying silent about this very real problem can not only affect their health but affect their relationships, and quality of life. Vaginal moisture Some say thin, dry vaginal and vulvar tissues affect 75% of postmenopausal women. But it’s not just midlife or older women that suffer from vaginal dryness. There are any number of other circumstances that can thin and dehydrate your vagina, such as having a baby, nursing, taking hormonal contraception, being treated for cancer with chemotherapy or radiation, and medications such as anti-histamines or decongestants. Vaginal moisturizers are used to prepare and heal your vagina so that you can once again enjoy intimate relations. “In the Pink” organic botanical moisturizers restore balance without the use of chemicals. You literally turn back the clock while you sleep. Consider them a daily “vaginal supplement”. “In the Pink” Moisture Drops are a safe and effective choice that just may change your life. What Can I Do? Vaginal dryness is treatable. The first goal is to find out what is causing your problem and then come up with a plan to help naturally restore your vagina, whether it is stress relief or making a change in your medications. Most natural lubricants on the market will provide short-term relief but it is important to find long term relief as well. In The Pink offers a Vaginal Moisture Drop that helps soothe, hydrate and restore your vagina. This perle is rich in Omega 3 and 6 linoleic acid with anti-inflammatory, detoxifying and analgesic properties. This perle is designed to closely mimic your natural lubrication while restoring tissue elasticity. In The Pink’s Intimate Massage Oils are a lubrication relief crafted from estrogen-free organic ingredients. This botanical blend is crafted to closely mimic a female’s natural lubrication along with the added benefits that essential oils have to offer. If you desire an all-natural product to provide lubrication, moisture, aromatherapy, pain control and enhanced intimate play, this is the lubrication for you.

  • On My Mat: Mindfulness and Cancer

    Mindfulness: A mental state achieved by focusing one's awareness on the present moment. By guest blogger, Michelle Stravitz from 2Unstoppable My cancer diagnosis, and the months and years that followed, have taught me the incredible value of mindfulness, particularly for combating the emotional rollercoaster of cancer treatment and survivorship. In many ways, it has saved me and restored my emotional well-being! Exercise – in almost any form – is a great way to achieve mindfulness, and thus it can help with the anxiety, depression, and fatigue that often accompany a cancer diagnosis. And, as a bonus, physical activity combats so many side effects – for me it has helped loosen up tight tissue resulting from radiation and surgery, increase bone density and muscle mass lost during chemotherapy, and improve balance and brain fog caused by chemo and worry. I have found that I can often achieve a state of mindfulness through exercise, whether I’m focusing on form and muscles during a barre class, on rhythm and dance steps in a cardio exercise class, or, most effectively, on flow and breath in a yoga class. Staying ON MY MAT is a lesson I have learned after many years of yoga practice, and most of the time I can forget about the grocery list, appointments, or fear of recurrence (!) and stay in the moment when I’m on my mat. I can also achieve mindful meditation while walking, by focusing only on putting one foot in front of the other. One-step-at-a-time provides an ideal metaphor for the one-day-at-a-time and one-phase-at-a-time approach to cancer treatment. I can even find my mindful state when jogging. The thump-thump of my feet hitting the pavement keeps my mind only on the step ahead of me. And in that way my mat is my-feet-hitting-the-pavement, and nothing else. “Cancer is known to cause high levels of anxiety and depression in patients and survivors, and mindfulness is a proven method for combatting these emotional states.” What does this really mean? Anxiety is defined as worrying about the future, and it’s hard not to do this when you’re thinking about where a cancer diagnosis might take you. Depression is associated with looking back at the past, and it’s also hard not to go there when wondering what caused the cancer in the first place, reliving when it was discovered, and grieving for what life was like BEFORE. Mindfulness reminds us to stay in the present moment … on our mats, on the pavement, or in our breath, where we are still very much alive, taking care of our bodies, doing everything we can to improve our outcomes and our quality of life … right now. So … when your mind wanders ahead of you, or strays behind you … bring it back to your mat, whatever that mat looks like for you. Find your mat … your favorite form of movement … and stay with me, right here, right now. I’ll meet you there.

  • New Options for Advanced Cancer Patients

    Personalized Cancer Treatment Strategies 101 We all know that the standard of care is simply not enough and if the cancer is not contained early on and actively managed, then it will most likely recur and progress. Below are a few examples of personalized options that often lead to better treatment results and longer time in remission: Newly diagnosed patients Chemo sensitivity testing: Oncologists typically have to choose between a handful of standard chemotherapeutic agents to start from. This decision oftentimes is based on little knowledge about the tumor. BUT chemotherapy has toxic side effects which weakens the body and decreases its ability to fight cancer. If the right chemo isn't chosen (which is often the case), the patient experiences toxicity with no benefit. Chemo-sensitivity testing tests and determines the most effective drug or combination for the patient. It is not routinely done because it requires viable tumor tissue and because it is an out of pocket expense. Pursuing this test upfront will set the patient up on the right treatment course from day one. Personalized cancer vaccine: Surgery is followed by chemo, and chemo is followed by a passive monitoring period (scans, MRI, etc…). This period is referred to as a “wait-and-see”, and reactions are only made when the problem recurs. BUT there are experimental tools to activate the immune system to fight cancer proactively. A personalized cancer vaccines is a type of immunotherapy that directs the patient's own immune system to recognize unique markers on the tumor and then awaken it to actively fight cancer cells, helping to reduce chances of recurrence. In a perfect world, every patient should get vaccinated, but we are not there yet. This treatment is not routinely done because it requires viable tumor tissue, and because it requires a complex infrastructure to prepare and administer. It is also experimental (but tested at various academic institutions), and has little or no side effects (good quality of life). Pursuing a personalize vaccine is a proactive way of fighting cancer, can extend time in remission, and reduce chances of recurrence. Recurrence or advanced patients Genetic sequencing: Targeted drugs are different from chemotherapeutic agents. Chemo kills good and bad cells, while targeted drugs are designed to kill the bad cells. A genetic sequencing test or (also referred to as molecular profiling test) identifies unique markers on your tumor, and matches those to drugs designed to target mutations expressed on the tumor. While this often reveals treatment options beyond the current standard of care (because some of the drugs are experimental), this diagnostic does not test whether the drug actually works on that tumor or not. It narrows down a list of about a 100+ targeted drugs to about 10, thus giving the oncologist direction. This test is almost routinely ordered in the USA, sometimes covered by insurance, and requires paraffin (dead) tumor tissue. Pursuing this test upfront will identify targeted drugs your oncologist can use to treat your cancer. Drug screening test: This test screens for the widest range of chemotherapeutic agents, targeted drugs and experimental drugs (not designed to target a specific mutation). It tests the various options and combinations on the tumor itself and prioritizes the best one that works (so it is not theoretical). This test is not routinely done because it requires viable tumor tissue and because it is an out of pocket expense. Pursuing this test upfront will help you identify a chemo, a targeted drug, or an experimental drug from a wider range of options, and confirm that the drug works before wasting a lot of time and effort pursuing a treatment that does not work. Another type of Drug screening is Mouse xenograft models: This is a deeper version of the drug screening test. The idea is to grow the patient’s tumor on mice so when screening drugs, one does not only have the cancer cells, but the entire tumor environment to test on. This helps explore advanced, experimental and combinational drugs that might work (or drugs that have previously worked on other indications) rather than experimenting on the patient’s body. This is helpful when you have a rare disease or very limited treatment options left. This test is not routinely done because it requires viable tumor tissue and because it is an out of pocket expense. Pursuing this test upfront will help you identify a chemo, a targeted drug, an experimental drug, or a combination of, and also confirms that the drug works before wasting a lot of time and effort pursuing a treatment that does not work. Personalized T-cells Therapy: Also referred to as TILs (Tumor Infiltrating Lymphocytes) is a form of Immunotherapy, and often compliments vaccines. Vaccines recruit more soldiers to the battle by educating the part of the immune system that does not recognize the cancer. T-cell therapy also recruits more soldiers to the battle, but by cloning and multiplying the part of the immune system that recognizes the cancer, and thus giving your own immune system a better chance to fight the cancer cells with little or no side effects. In a perfect world, every patient should get T-cell therapy, but we are not there yet. This treatment is not routinely done because it requires viable tumor tissue, is experimental, and because it requires a complex infrastructure to prepare and administer. Pursuing T-cell therapy boosts the immune system to fight cancer in parallel to other treatments you are on, can extend time in remission, and reduce chances of recurrence. BOTTOM LINE: No two tumors are the alike, and each contains important information critical to the treatment, BUT tumors are NOT preserved alive by the hospitals and are routinely discarded. Personalized treatments start with having access to the viable tumor, Store My Tumor. For more information: www.storemytumor.com Team StoreMyTumor +1.267.702.5501 cs@storemytumor.com www.StoreMyTumor.com Return to the Blog

  • Drawn to Healing: Art Therapy

    By Dr. Carole Weaver In my early 60's, with a lifetime of adventure in travel, single parenting and fund-raising--and a few side trips into musical comedy, I was ready for a new exciting chapter. My kids grown and gone to Hollywood, I aimed at Broadway, or at least auditions for bit parts (the older woman—an extra decked out in colorful rags in Sweeny Todd). Wham! Fate however dealt me two surprises: a new boyfriend-- an art appraiser--and... breast cancer. Complications ensued (read about it in my memoir, SIDE EFFECTS: The Art of Surviving Cancer) especially with the cancer, but, hey, a Cinderella romance ensued even for this aging feminist. One problem: It takes a village, as we all know, to help a cancer patient through treatment. But my village looked more like a ghost town. Family was 3000 miles away. Boyfriend suffered sick people as energy drains. Shrink only interested in "authenticity," not pain. And girlfriends, while valiant, soon became exhausted with the regimen of driving, shopping, calling and, well, caring. A few pieces of art stepped into the breach. The “side effect” I discovered as an antidote to an e-coli infection in the operating room, a nasty reaction to chemo, and multiple surgeries, was how a handful of beautiful objects distracted, comforted, delighted, and ultimately gave me a deep healing perspective which got me through my ordeal. I was no art expert, no art major; didn’t even especially like museums for more than 45 minute visits. I just let my own frame of mind (pun intended) move me toward a statue, a painting, a piece of music, even an object artistically sewn. Most of the individual pieces had something to do with the stage of my treatment. For example, when I was going through chemo, my appetite was horrible. I could barely get anything down. I dreamed of eating clouds. Then I discovered this large Turkish plate-- a reproduction of a fifteenth century ceremonial ceramic. It was gorgeous with the special calligraphy dedicated to the Sultan and his distinctive Tughrah, his signature in the middle. This plate was never meant to be laden with food. It was strictly an object of magnificent craft to be looked at and appreciated. I loved that plate during those days when the Nausea Imp waited next to my cheek. It was the opposite to what I saw at work when people would bring in gigantic sandwiches for lunch; or at the Chinese buffet, the food dangling over the over-burdened plates. The Turkish plate told me my aversion to food was rewarded with grace, with the masterly strokes of the anonymous hands that filled the background of the Tughrah like a movie set or a musical accompaniment I could not hear. Basically, this is the way it worked: If I saw something in my boyfriend’s house that I liked and came back to it to stare, hold it in my hand, and wonder at its creation, I stayed with it for a while. It made me happy. Eventually, I would understand that it did more than that to my physiology. I learned that art can heal.

  • Molecular Breast Imaging

    By Leslie Ferris Yerger, founder of My Density Matters So that my story doesn’t become your story. And so MORE women with breast cancer become SURVIVORS. ‘Do the best you can until you know better, and then when you know better, do better.’ – Maya Angelou Eighteen months ago, I was diagnosed with Stage IV breast cancer after receiving that phone call that we all want to get saying, ‘All good, see you next year’ from the radiologist’s office reporting on my mammogram and ultrasound just one month prior. After learning that breast cancer was in almost every bone of body, I was beyond confused to say the least. How could this have happened? There was much to learn. What I now know, is that mammography finds less than ½ of the breast cancers present in dense breast tissue, and that those of us with dense breasts are 4-6 more times likely to get breast cancer to begin with. Having dense breasts is a higher risk factor than having a mother or sister with the disease. Around half of all women in the world have dense breast tissue; it is completely normal. Therefore, though mammography has saved many lives, it can fail those of us who actually need it the most. Many in the medical industry have known this for years. It is time, now that we know better, to do better. It is those facts, along with realizing there is a better way to detect breast cancer in dense breast tissue that is FDA approved and commercially available but not widely used, that motived me, along with personal reasons, to walk, and walk, and walk. See a description of this technology here. Molecular Breast Imaging, which finds around 400% more cancers than mammography in women with dense breast tissue, was invented at the Mayo Clinic where they are conducting a multi-site, 3000 women trial comparing MBI to 3D mammography. Preliminary results are astounding. Out of 1000 women with dense breasts tested, MBI has found 9, while 3D mammography has found 2. Wow. It is this study at the Mayo Clinic, called Density MATTERS, that I fundraised for while I walked 500 miles from France through Spain, on the Camino de Santiago. Many people ask me WHY I walked the Camino. My answer depends on how much I want to get into it, and how deep of a conversation I really want to have, or if there is time to explain. So sometimes I just say: for the adventure, to do something cool, for spiritual or religious reasons, or even to satisfy the slightly independent wild hare I have always had, or even to fundraise for a great cause. All of these answers are true actually. But my REAL WHY is much more than that. It’s about that thing nobody wants to talk about. It’s about that thing we all dance around. It’s about that 41,000 number. It’s that 41,000 women per year die of breast cancer in the US. Just imagine what the worldwide figure must be. My REAL WHY is about kids without moms, grand kids without grandmas, and widowers without wives. It’s about careers unfinished, potential not met, and dreams not realized. It’s about lives cut short, and all of the hurt that goes with that. To think this happens 41,000 times over every year is heartbreaking. To think that there is a way to detect MANY more breast cancers earlier when they are curable, that is FDA approved and commercially available, but is not available to most women is unfathomable. So this is the REAL reason WHY I walked 500 miles. So there can be more kids with moms, more grand kids with grandmas, and less widowers without wives. So careers can be finished, so potential can be met, and dreams given a chance. The next step is to finish funding the Density MATTERS multi-site study including 3,000 women so that we take one step closer to Molecular Breast Imaging becoming available to all women. This is the technological advancement we all want, need, and deserve to have. Now that we know better, this is a way to do better. Please join me is spreading the word so that women everywhere, including survivors with dense breast tissue, can begin to have access to better additional breast cancer screening methods such as Molecular Breast Imaging. So that my story doesn’t become their story And so MORE women with breast cancer become SURVIVORS Now that we know better, we MUST do better.

  • Store My Tumor: Why More Cancer Patients Are Storing Their Tumors

    By Store My Tumor You know that the standard of care for cancer is simply not enough and if your cancer is not contained early on and actively managed, there’s a high risk that the cancer will recur and progress. What you may not know, and is a vital component to advanced cancer treatment, is that tumor preservation is the only way to customized treatments and strategies that are more likely to work. What many cancer patients do not know and often times find out too late is that a live cancer tumor is required in order to design personalized treatment options. And, how that live tumor is stored is a critical component. If you choose to have your hospital store your tumor, it will NOT be preserved in the right formats. Hospitals routinely discard tumors as medical waste. StoreMyTumor offers a service that can help you collect, process and store your tumors in multiple formats so that you continue to have access for diagnostics and treatment. Don’t let anyone discard your tumors. Your tumor can help you answer tough questions. Preserving the tumor or biopsy in multiple formats is the first step toward developing personalized effective treatments. With the tumor preserved in the right format at the time of surgery or biopsy, you can answer very big questions, such as: Which chemo is my tumor most likely to respond to? Which one of the thousands of drugs out there may work on my tumor? Are there any experimental drug/ treatment/clinical trial out there I should consider? Is there a certain combination that may work better than the standard or one drug? Which immunotherapy drug/ treatment is available for me? Diagnostics instead of guessing There are diagnostic tests that synthesize various data points about your tumor and translate them into specific recommendations that become your personalized cancer treatment roadmap, such as: Genetic testing– checks for hundreds of targets on the tumor and matches these targets to chemo/drugs and experimental drugs designed for that target. Chemo-sensitivity testing– tests which chemo is most effective. This is vital because chemo has toxic side effects. Drug screening / organoids – tests a wider range (100+) of drugs and combination of drugs, including, chemo, targeted drugs, and immunotherapy drugs. Personalized Immunotherapy instead of a wait-and-see approach Immunotherapy is also another area patient consider. It educates your own immune system to fight the cancer cells. Immunotherapy is experimental, typically considered in parallel to drugs and standard treatments, and helps extend time in remission. In summary, here’s what is possible when you preserve your tumor: Bottom line: No two tumors are the alike, and each contains important information critical to the treatment. Tumors are NOT preserved in the right formats by the hospital, and are routinely discarded as medical waste. Don’t let anyone discard your tumors. For more information: call +1 267.702.5501 or www.storemytumor.com Team StoreMyTumor +1.267.702.5501 cs@storemytumor.com www.StoreMyTumor.com Return to the blog.

  • Empathy and Cancer

    By Kristie Konsoer Empathy: the ability to understand and share feelings with another. I recently read a blog written by an older woman who had a cancer scare that she had to deal with on her own. Her husband had passed away from cancer and she had had enough of it in her life. Her feelings are understandable. Two mammograms directed her to an ultrasound. The ultrasound triggered a biopsy. Her timeline read very much like mine did. One test after another was given with heightened urgency. Everything was fast tracked for this woman because the doctors were worried about the outcome of tests. She didn’t know how she would do cancer alone. Thankfully, this woman did not have breast cancer. Of course, I am glad it turned out this way for her. She said her experience gave her empathy for people who are alone. Hello? I’m sure this fellow writer is a lovely woman. Supporting someone through illness is hard. Losing him/her to that illness is excruciating. I do not diminish her pain because I know it’s real. I can empathize with her because I have lost my people in my life. Cancer takes too much. I am confused though why empathy needs to be directed toward people who are alone. Is aloneness somehow lesser than togetherness? Do my experiences when I spend time with friends, family, or a group of people give me empathy for people with partners? They do not. I may at times feel a little thankful to be back home and away from some of the stimulation and unwelcome opinions, but I do not have empathy for people in a relationship. It sounds absurd when the shoe is on the other foot. Somehow the comment rubbed me the wrong way. It seemed more bothersome to me that she felt empathy for people who are alone than for people who have cancer. I just kept scratching my head. It felt like pity or that someone was feeling sorry for me. I don’t want someone’s sorrow. Her remarks made me feel like she was saying, “Thank goodness I didn’t have cancer and the double whammy of being by myself!” This is more of an inner reflection than what was likely intended. I guess being on my own is a bit of a touchy subject for me, mainly of how I feel society perceives it as something less. I feel like I’m regularly defending my status. Sometimes I feel forgotten. Having cancer and being on my own really isn’t so hard. For one thing, I am reliant on myself and can organize appointments, etc. in a way that works best for me. I don’t have to check with others when I need to change my plans. I know how I feel and I don’t need to try to convince or explain those feelings to someone else. Sometimes it’s hard. Sometimes I wish I had a little more help and didn’t have to figure everything out. And I do have help. I have plenty of support. I ask for what I need. I feel connected to so many and have nurtured meaningful relationships. Technically, yes, I am doing cancer on my own, but I’m also not. It’s complicated. “Empathy is simply listening, holding space, withholding judgment, emotionally connecting and communicating that incredibly healing message of ‘You’re not alone.’” ~ Brené Brown I am not sure I’ve done all those things in my reaction to what I read. This post itself has been difficult for me to write. I have felt angry and questioned those feelings. However, it is completely okay, in fact it is fine, more than fine, for me to feel anger. I feel misrepresented. I feel there are indirect implications that are at my expense while someone else is expressing gratitude. Gratitude is not gratitude if someone (or another group) is put down in order for another individual to feel grateful. Nor is it empathy. Empathy means a lot to a person whether they have someone at their side or they are on their own. Empathy is a universal yearning we all need and we all have the capacity to give. You are putting yourself in someone else’s shoes. It still isn’t quite the same because at the end of the day you put your own shoes back on. Still . . . there are moments when you almost get it. The important part is that you try to get it. I have beloved friends who try to get it. One of my goals with this blog is to change perspectives on cancer, particularly advanced stage cancer. When I read something that feels a little, “Oh, that poor person has cancer and is alone,” I don’t like anything in that sentence because that feeling of pity permeates whatever sentiment is trying to be conveyed. It doesn’t feel good. What feels good is being welcomed to a group. I’d rather hear a compliment about something amazing I accomplished instead of a question on whether I went with anyone while achieving it. It feels good to be appreciated for my other qualities. It feels good to be included in things. If I’m unable to do something, then I may need to pass, but I appreciate being included. I like it when people remember things about me and respect my thoughts and opinions. I like it a lot when I’m not constantly asked about my health and truly treated like one of the gang. A small bit of thoughtfulness goes a long ways. It is how I believe we all can treat one another respectfully and compassionately. Empathy in action is a lifestyle choice. It’s possible I’m confusing empathy with sympathy, but I don’t think I am. In fact, I think some other people are. I certainly don’t want anyone’s sympathy or sorrow. It belittles and demeans if directed at me because I’m living with cancer. I want an even playing field. Don’t give me something or take something from me because of my health. Don’t give me something or take something from me because I’m single. I didn’t ask for your sorrow or pity. I’ve asked for your encouragement, support, and friendship. These are the things I offer. There is something else you can give me: caramel. If someone were to offer me a caramel, I would not say no. Really good caramels are an entirely different story. It just might be an edible form of empathy. Empathy is feeling as sad for a friend as if the event were happening to you. It’s understanding your friend is in a lot of emotional or physical pain. Empathy is understanding a perspective that’s the polar opposite of yours. Parents and teachers demonstrate empathy every time they know that something that isn’t a big deal at all really is a huge deal to a child. You show empathy to me when you understand that I may cancel plans, not feel one hundred percent, and don’t ask me a laundry list of questions. It means a lot to me when you share something hard in your life rather than me always explaining my latest hurdle that I try to embellish with a little humor thrown in for good measure. Empathy is not making comments along the lines of “It’s too bad you had to get cancer.” Yeah, I just don’t know what I was thinking when I was in the cancer store. It isn’t empathetic to tell someone what he/she feels. Neither is telling someone what he/she needs to do to fix what is deemed not right (health, job, loss, etc.). Empathy is not putting someone down or saying things could be worse or that he/she should feel grateful. The words “at least” aren’t used at all. Please don’t tell me to live life to the fullest because tomorrow I could get hit by a bus. What many people don’t understand is that I’m running from that stupid bus every day. These things seem obvious to me, but I’ve heard them all. Perhaps the intention isn’t to show empathy, but to show something far less kind. I can’t figure it out. And empathy definitely is not knowing what it might be like to have cancer and be alone because you had a scare and everything turned out just fine. You put your own shoes back on and walked on. Empathy is something we all need and we all have the ability to give. At best, we understand what it’s like to be scared, perhaps terrified about our health and our future. We understand all the “what ifs” that run wild in our thoughts. We understand that disease can be a very lonely place to live. We can relate to one another that our upsetting news, event, or circumstance may be completely different from another person’s struggle, but that they are the same in that they are unsettling, frightening, and possibly very lonely feelings. We understand people are doing the best they can with what they have. Empathy connects us to one another. Through empathy we can share with and support one another. I can empathize with those feelings. I am not alone. You are not alone either. Consider replying: Where have you seen empathy alive and well in your life? How do you best handle situations when someone is not empathetic? Here is the link to my site: https://www.kristiekonsoer.com

  • Breast Cancer and Weight Management

    Survivingbreastcancer.org had the pleasure of meeting Janine Gilarde during breast cancer awareness month last October at one of our Survivors, Thrivers, and Friends event. It was one of our first events in MA and it was a packed house. We know that diet and nutrition are an essential component of managing a cancer diagnosis and preventing recurrence. Our event focused on diet, nutrition, plant based meal plans, meditation, yoga, pilates, and overall health and wellness. It was a natural fit that Survivingbreastcancer.org and Janine crossed paths and we are thrilled to partner with her as a guest blogger for our community! By Janine Gilarde, RN & Healthy Living Coach Originally published on here 4/14/2019. Weight gain, especially during or after cancer treatment, can be unexpected and distressing, but it’s not uncommon. Cancer itself — along with side effects from treatments such as chemotherapy, radiation, and surgery — can significantly impact your weight. It’s never too late to take steps to improve your health. Whether you were overweight or obese before cancer, or gained weight during or after treatment —  managing your weight after a cancer diagnosis is possible. Common Beliefs about Losing Weight Before being diagnosed with cancer, you may have already tried several ways to lose weight or increase physical activity and found the results discouraging. Here are some common beliefs that may prevent people with cancer from pursuing a healthier lifestyle. “I’VE TRIED EVERYTHING AND JUST CAN’T LOSE WEIGHT.” Losing weight is challenging.  You may feel you have “failed” because previous attempts to lose weight have not worked. The truth is that you just haven’t found what works for you yet. Many people find it easier to to lose weight when they have a structured program that offers accountability and support. “THE HARM HAS ALREADY BEEN DONE.” It is never too late to improve your health.  Many studies have shown that people who choose healthy foods and exercise regularly are at lower risk of having the cancer return or of developing a new cancer. In addition, changing to a healthier lifestyle reduces the risk of other medical problems, such as diabetes and heart disease. “I ENJOY EATING AND DON’T WANT TO CHANGE MY DIET.” You can still enjoy the foods you love, but with more balance. Focus on eating foods that are nourishing, while reducing non-nutritional foods that are high in calories and unhealthy fats. Even small reductions or changes to what you eat and drink can help you lose weight slowly over time. Healthy Diet – Healthy Weight – Healthy Lifestyle Nutrition Nutrition is not just about calories – where you get your calories matters. If you want to improve your health, focus on foods that are nutritionally dense. There are some studies that suggest eating this way can help prevent and reverse many chronic diseases, including cancer. Physical Activity Aerobic and strength training exercise can improve your quality of life, help reduce fatigue, lessen muscle loss, and prevent the gain of body fat.  Physical activity is also important for weight management. Behavior Change Support For many, being overweight or obese is more complex than simply eating too much and exercising too little. It’s important to get support when you are trying to lose weight. There are many studies showing that working with a weight loss specialist/wellness coach can help you make healthy lifestyle changes and stick with them over time. More information about Janine and her healthy tips can be found on her website.

  • Is It Possible to Prevent Breast Cancer Metastasis?

    Jan. 21, 2019| By Diane Mapes / Fred Hutch News Service Original article published on FredHutch.org here. Study reveals how blood vessels in the bone marrow protect dormant tumor cells, suggests a way to kill them in their sleep. Fred Hutch translational researcher Dr. Cyrus Ghajar talks about the spread of breast cancer tumor cells during the third annual Northwest Metastatic Breast Cancer Conference in October 2018. Video excerpt by Connor O'Shaughnessy / Fred Hutch News Service Researchers at Fred Hutchinson Cancer Research Center in Seattle may have found a way to essentially smother cancer cells in their sleep, preventing them from ever waking up and forming deadly metastatic tumors. The work, led by translational researcher Dr. Cyrus Ghajar, has also turned on its ear the longstanding belief that chemotherapy can’t kill dormant disseminated tumor cells — cancer cells that escape early on and hide out in other regions of the body — because those cells are in a “sleeper state.” They’ve stopped growing so chemo, which blindly targets all fast-growing cells, healthy and otherwise, doesn’t work. That’s not quite the case. “It’s always been assumed that dormant cells cannot be killed by any kind of chemotherapy because they’re not dividing,” said Ghajar, who runs the Laboratory for the Study of Metastatic Microenvironments at Fred Hutch. “But what we’re showing is that’s not true. They’re relying on survival signaling in their microenvironment, in this case specifically from blood vessels within the bone marrow. And if you can take away that signaling, you can sensitize them to chemotherapy.” Ghajar’s paper, published today in Nature Cell Biology, is the culmination of more than four years’ work and proposes both a paradigm shift in how we view dormant disseminated tumor cells — and a new therapy to potentially slay this sleeping giant. Although it’s still early days, Ghajar and his team slashed the metastatic relapse rate in his mice by more than two-thirds. Rebecca Seago-Coyle, a 43-year-old IT project manager and breast cancer survivor who worked with the team as a research advocate, said she loved Ghajar’s innovative approach — and his inclusiveness. “One thing I love about Cyrus is that he makes room for patients,” she said. “We always have a seat at the table. I’m not metastatic, but I still have that fear that the cancer could come back. Thirty percent of early stagers go on to become metastatic. If we could lower that number, that would be huge.” The nonlinear path to metastasis Cancer doesn’t just spread because a primary tumor has reached a certain size or stage. Disseminated tumor cells, or DTCs, can break off before a tumor has even formed and travel to distant sites in the body where they lie dormant until something “wakes them up” and they start the deadly process of metastasis, or cancer spread/colonization. One common hideout for these sleepy creeps is the bone marrow. Dormant tumor cells have been found in the bone marrow of breast cancer patients at the very earliest stage of the disease — DCIS or stage 0 — and Ghajar said they’re mostly likely present in other patients with early-stage disease, as well. Past research has shown an association between DTCs in the bone marrow of cancer patients and metastatic recurrence — and not necessarily just bone metastasis. “Patients with breast cancer cells in the marrow recur more often than patients who don’t have cells in the bone marrow,” said Ghajar, who collaborated with a cadre of Fred Hutch researchers as well as scientists from the University of Colorado Anschutz Medical Campus and the University of California, San Diego. “And tumor cells in the bone marrow predict metastasis in a variety of different sites. They even predict metastasis in cancers that never get bone mets.” Why disseminated tumor cells snuggle up to the bone marrow microenvironment where they go dormant is still a bit of a mystery, although we do know that dormant blood stem cells hang out in the same place. What wakes the sleeping cancer cells up and starts them growing again also remains a huge question. But Ghajar said there’s scientific evidence that “if you can successfully remove disseminated tumor cells, you can prevent those patients from having mets.” And that has become the focus of his work. Breast cancer’s ‘long tail’ For this research, Ghajar and his team focused on the most common type of breast cancer, estrogen-receptor positive (or ER+), which comes back as metastatic disease five or more years after treatment in up to 17 percent of early-stage patients. In comparison, the metastatic recurrence rate for all breast cancer patients is thought to be between 20 and 30 percent. “There’s this long tail in ER+ breast cancer where patients will go for years and years without any kind of problem and then five, seven, 10, 15, 20 years later, they have a recurrence,” Ghajar said. Unlike some early-stage cancers, metastatic disease is incurable. Patients with stage 4 disease are in treatment for the rest of their lives. And while some patients live with their cancer for years — or even decades — when their treatment stops working or they run out of options, they die. Ghajar’s finding, if it holds true, could reduce the number of early stagers who go on to become metastatic, effectively snipping off breast cancer’s long tail. “We’re not trying to treat a primary tumor or trying to treat mets,” he said. “We’re trying to treat DTCs, for which there are no current therapies.” Teri Pollastro, 58, another research advocate who worked with Ghajar, went from DCIS, or stage 0, to stage 4 years after her initial treatment. She believes her advanced cancer was a direct result of awakened DTCs. “That’s exactly what happened to me,” she said. “They stopped treatment and the stuff that was quiet and sleeping came to life.” Uncoupling dormancy and chemo resistance Ghajar said work he did as a postdoc in the lab of Dr. Mina Bissell at Lawrence Berkeley National Laboratory, as well as research done at the Hutch by Dr. Pete Nelson, led him to question the conventional wisdom of DTCs surviving chemo due to their paused cell cycle. “We’ve seen evidence that quiescent cells respond to chemo,” Ghajar said. “They seem to sense when you dump chemicals on them. And there’s been other evidence that architecture — the microenvironment — may be more important than the cell-cycle state in terms of the response to chemotherapy.” Tumor microenvironments are the noncancerous cells and molecules surrounding tumor cells; they're often co-opted by the cancer to help it grow. To pursue this scientific question, Ghajar and his team looked at how DTCs behaved in two preclinical models: mice with breast cancer and organotypic cultures, i.e., human blood vessels and bone marrow tissues growing in a dish. The researchers first dosed mice with chemotherapy, then looked for DTCs in their bone marrow. The only tumor cells that survived were those that were nestled close to the microvasculature, the tiny blood vessels of the bone marrow. They then seeded the organotypic cultures with human breast cancer cells. The tumor cells surrounded by blood vessels grew dormant; those without blood vessels continued to rapidly divide. The team then treated the tiny tumor environments with chemotherapy to determine whether DTC survival was coincidental, or something else. “When we added increasing doses of chemotherapy, we noticed that without blood vessels, the breast tumor cells died,” he said. “And with the blood vessels, the breast tumor cells didn’t die. So maybe the blood vessels were protective.” To find out, Ghajar and his colleagues used a growth factor to wake up the dormant cells, then treated them with chemotherapy. Conventional wisdom held that the awakened DTCs would be killed because they were now active and rapidly dividing. But that’s not what happened. “It didn’t matter at all that we had woken them up,” he said. “The chemotherapy had no effect because the blood vessels were there.” Silence the signal, kill the cancer The researchers then went about trying to determine what it was about the blood vessels that offered protection to both active and quiescent cancer cells. In collaboration with Peter Nelson’s laboratory at the Hutch, they used RNA sequencing to a look at the genes that were being activated or expressed in the organotypic cultures both with and without the blood vessels. They then used protein analysis or proteomics to discover what, exactly, was being secreted and deposited on the surface of the various cells that might result in this protection. Eventually, they found the answer. “The main thing that was being enriched when blood vessels were present — as opposed to when they weren’t present — were molecules that bind integrins,” Ghajar said. Integrins are proteins that, among other things, help with cell signaling; they integrate signals from the outside of the cell with the inside of the cell. Humans produce different types of integrins, and there are also several existing molecular inhibitors, or “off-switches,” for them. The research team screened these integrin inhibitors to see if any would interrupt the blood vessels' protective signaling and found two that did just that. They then combined integrin inhibition with chemotherapy and tried it out on the preclinical model of human bone marrow — to great effect. “When we interrupted signaling from those two integrins, we started sensitizing cells to chemotherapy,” Ghajar said. “Chemo on its own would kill one third of all the single cells in our culture. But when we combined integrin inhibition and chemotherapy, we killed over 90 percent of the single cells in our cultures.” What’s more, the team was able to kill the DTCs without first waking them up, showing that cell division was not necessary to get chemo’s toxic attention. Once the researchers moved onto mouse models with this new combo therapy, they were able to reduce the reservoir of DTCs in their bone marrow by 94 percent. Further, by following the mice for a number of months, they determined their odds of metastatic recurrence were greatly reduced. “With only chemo, over 70 percent of the mice relapsed with mets,” Ghajar said. “But when we used the combo only about 22 percent of them relapsed with bone mets. We were able to save a lot of mice from relapsing with breast cancer metastases using this approach.” Next steps for the science The big question, as always, is “Will it work in humans?” “Oftentimes, you have something that looks beautiful in a mouse, but when you try it in a human, it never works the same,” Ghajar said. “But we really tried hard to mitigate that by the models we used.” Ghajar said his next step will be to make human versions of the molecule he used for integrin inhibition and then test them to make sure they’re safe in people. Once that’s established, the research can move toward a clinical trial that tests the new combo therapy on cancer patients. Although cautious about getting ahead of the science (a clinical trial could be three to five years away), Ghajar does believe his research demonstrates that dormant cells can be killed by chemo without waking them up, which is significant in and of itself. “No matter what happens with regard to the specific molecules we’ve discovered, that concept is going to endure,” he said. Could this potentially help patients currently living with metastatic breast cancer? Ghajar said it’s too early to draw any conclusions about that. “We’re trying to find a way that we can augment therapy up front to kill the roots of metastasis before they arise,” he said. “Would this possibly be a way to eliminate the cells that are going to seed the second met or the third met or the fourth? There’s potential, but it’s not something we trialed experimentally.” Pollastro, the patient advocate living with metastatic disease, said she’s optimistic, despite the nascent stage of Ghajar’s work. “Everything starts in a mouse model, doesn’t it?” she said. “I’m very hopeful. And that’s a great next question for him to investigate. Wouldn’t it be wonderful if that worked?” Funding for this research came from Fred Hutch, the Cuyamaca Foundation, a Department of Defense Era of Hope Award, Breast Cancer Research Fund, National Breast Cancer Coalition’s Artemis Project for Metastasis Prevention, Susan G. Komen, the National Institutes of Health/National Cancer Institute and the Fred Hutch/University of Washington Cancer Consortium. Diane Mapes is a staff writer at Fred Hutchinson Cancer Research Center. She has written extensively about health issues for NBC News, TODAY, CNN, MSN, Seattle Magazine and other publications. A breast cancer survivor, she blogs at doublewhammied.com and tweets @double_whammied. Email her at dmapes@fredhutch.org. Are you interested in reprinting or republishing this story? Be our guest! We want to help connect people with the information they need. We just ask that you link back to the original article, preserve the author’s byline and refrain from making edits that alter the original context. Questions? Email us at communications@fredhutch.org Return to reading more blogs

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