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- Calcium and Breast Cancer
Are You Getting Enough Calcium? By Sue Cimino My name is Sue Cimino and I am a Breast Cancer Survivor. As with many of you, my journey was difficult. Whatever could go wrong did and whatever side effects there were, I was sure to get. My monthly focus is to help others by sharing something that helped me and continues to do so. Throughout my journey and now, I am a firm believer of proper nutrition and the benefits it lends. I truly believe that I was able to recover quicker and continue working throughout my 2+ year journey, which is still ongoing. Since I have not been able to work-out (heading in for my eighth and final surgery), I focus on eating healthy. However, I understand that although eating healthy is beneficial, it is impossible to get all of the nutritional needs from my food source. Many of the nutrients are lost during the cooking process and many fruits and vegetables are picked pre-ripened in order to ship to the stores for purchase. Not to mention that our soil has gone from over 80 minerals and now depleted to 2! Like many of you, my chemo has resulted in me developing osteoporosis. In addition to going every 6 months for a Zometa infusion, I am working hard to stop and reverse my this side effect from treatment. In addition to eating as many plant based foods that contain more calcium than milk, I add a calcium supplement to my diet. While everyone assumes that milk is the best source of calcium, I've got news for you! Excellent sources of calcium are found in green leafy vegetables such as broccoli, kale, spinach, watercress. Dried fruits, nuts (almonds), seeds (poppy, sesame, and chai), peas, beans and lentils I have researched several calcium supplements and found a superior delivery system. My calcium supplement is in an isotonic format, meaning, “same pressure” bearing the same chemical resemblance of our body’s blood, plasma and tears. This isotonic state allows nutrients to pass directly into the small intestine where they are rapidly absorbed into the bloodstream. By taking this in an isotonic state, it allows the maximum absorption of nutrients (98%). Most pills take anywhere form 40 minutes to 4 hours to turn into and isotonic state. Depending on binders and fillers they only allow for 10-20% absorption! Calcium exists in bone primarily in the form of hydroxyapatite. Hydroxyapatite accounts for approximately 40 percent of bone weight. The skeleton has a structural requisite and acts as a storehouse for calcium. Apart from being a major component of bones and teeth, calcium supports normal muscle contraction, nerve health, heart rhythms, blood coagulation, glandular secretion, energy production and immune system function. Sufficient daily calcium intake is necessary for maintaining optimal bone density, healthy bones and teeth. When the body does not get enough calcium per day, it draws calcium from your bones. The best form of calcium is calcium carbonate which is utilized by the body more efficiently, due to the fact that it increases the absorbability. Additionally, calcium is more readily absorbed by the body when in combination with magnesium, vitamin C, vitamin B2, boron and potassium. I have found Isotonix Calcium Plus is formulated with calcium carbonate and the additional vitamins and minerals needed in an isotonic form which allows for maximum utilization and absorption of calcium by the body and reduces the nutritive loss found in many calcium tablets or capsules. Everyone needs calcium. Practically no one ingests enough calcium in their daily diet. Besides being helpful in supporting and maintaining bone integrity, calcium serves a dynamic role as a mineral. It's very important in supporting the activity of many bodily enzymes and maintaining proper fluid balance. Isotonix Calcium Plus also promotes the normal contraction of skeletal and muscle. Learn more about the Isotonix Calcium Plus. By purchasing the Isotonix Calcium Plus, you enjoy the health benefits and at the same time you are contributing to Surviving Breast Cancer.
- HER2+
Her2 Positive Breast Cancer is part of a larger HER family. I was sitting in the audience when all of a sudden a slide popped up with “HER3” on it! Throughout my journey with breast cancer, I’ve been focusing on HER2. It’s the one we hear about most often. During our initial biopsy, oncologists and pathologists usually test to see if the tumor is either HER2+, HER2-, or sometimes, it comes back unequivocal. Before I go any further, let’s talk a bit about what HER2 actually is. What is HER2? HER2 is also known as the Human Epidermal Growth Factor (HEGF) receptor 2. The HER2 gene makes HER2 proteins which control how healthy breast cells grow, divide and repair themselves. However, in ~20% of those diagnosed with breast cancer, the HER2 gene doesn’t work properly and reproduces too many copies of itself which lead to the breast cells growing and dividing in uncontrollable ways (referred to as HER2 gene amplification and HER2 protein over-expression), or HER2+ Positive breast cancer. The good news is that with HER2 positive breast cancer, there are receptors on these proteins that usually respond well to treatment. The most common drugs for HER2+ Breast Cancer treatment include: · Herceptin (chemical name: trastuzumab); · Kadcyla (chemical name: T-DM1 or ado-trastuzumab emtansine); · Nerlynx (chemical name: neratinib); · Perjeta (chemical name: pertuzumab); (You can read more about Perjeta side effects here) · Tykerb (chemical name: lapatinib). I was treated with both Herceptin + Perjeta. (You can read more about these drugs in our blog here). HER2+ Breast Cancer Prognosis HER2+ prognosis laregely depends on a variety of factors such as the stage of your cancer, health of the patient, age of patient, size and grade of primary tumor, lymph node involvement, and response to therapy. According to the American Cancer Society and Nationa Cancer Institute, the 5-year relative survival of patients with HR+/HER2+ is 90.4%. HER1, HER3 & HER4 The ErbB protein family consists of 4 members ErbB-1, also called HER1 ErbB-2, also called HER2 ErbB-3, also called HER3 ErbB-4, also called HER4 The HER family can play a role into why some people are resistant to hormonal therapies. Without a scientific background, I have more questions than answers but I am excited to reach out to the medical professionals to help us understand this relationship. Stay tuned for details to come! I am just as curious as you are! Until then here are a few articles which speak to HER1, HER2, HER3, and HER4: NCBI HER1 and 2: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5950032/ Mass General Hospital has a great article on HER3 and it’s role in breast cancer (http://targetedcancercare.massgeneral.org/My-Trial-Guide/Diseases/Breast-Cancer/ERBB3-(HER3).aspx) OncoTarget HER4: http://www.oncotarget.com/index.php?journal=oncotarget&page=article&op=view&path%5B%5D=26867&path%5B%5D=83647
- Are You a Patient Advocate?
Some people use their vacation days to go to the beach or the mountains. Others go on adventures and explore new countries. I used my vacation days this past week to attend the esteemed San Antonio Breast Cancer Symposium (SABCS), Why? Because I was diagnosed stage II ER+/HER2+ breast cancer and I want to immerse myself into as much information as possible in order to understand my diagnosis, prognosis, and the latest news and information out there. First Impressions at SABCS2019 The convention center had the SABCS logos and colors plastered onto every door, the main entrance had what looked like a welcome rug as big as you could imagine adhered to the floor greeting you as you walked into the lobby. Registration signs and tables were equipped with name tags and schedules, and the exhibitors were setting up in the main hall. I was excited. The scope of the symposium is scientific. Thousands of oncologists, scientists, and researchers from all over the world swarmed to San Antonio, TX to present their scholarly and academic work. I knew that there were going to be words, terms, acronyms, and graphs that I wouldn’t be able to understand. But that didn’t matter. I jotted down notes, scribbled down long, hard to pronounce names of pharmaceutical drugs and short-hand reminders to myself to follow up on once I returned to the hotel room that evening. I was eager to learn as much as I could and feel empowered as I prepare for a follow up oncology appointment at my cancer center the following week. Themes from the Symposium The opening session set the tone for the following 4 days. Topics focused on: Metastatic breast cancer HER (positive and negative) breast cancer Hormonal receptor positive subtypes. Breast cancer that had metastasized to the brain. Why some people are resistant to certain therapies (To name a few). Was I becoming a Patient Advocate? It’s natural to want to learn as much as you can about your own diagnosis, the specific drugs that you are on, and your particular gene line mutations. After all, it is what we know the most about from our own first-hand experience. But as I was sitting in the audience listening to the names of new drugs the various cancer subtypes, I would lean over to my friends and whisper, “oh, that’s the drug our friend Sarah is on!” …. or “that’s what happened to our other friend Claire.” There was a name, a face, and a person associated with every slide, with every study, with every new discovery. It became tangible. It was no longer a solo cancer adventure, but a collective one within the breast cancer population. Transitioning from Patient Advocate to a Psycho/Social Economic Activist? In a day and age where diversity and inclusion embedded is in every company’s business plan and HR strategy, it is no surprise that diversity conversations are also hot topics within the breast cancer and clinical trial communities. In the Patient Advocate Lounge, we would sit around tables discussing the role culture and ethnicity play in our healthcare system. While there are more questions than answers, at least we have begun to bring these important topics to the forefront of the discussion and those who are diagnosed with breast cancer are using their voice to advocate for inclusion and pushing the envelope within clinical trials. For example, less than ~5% of breast cancer diagnosis are Invasive Lobular Breast Cancer (ILBC). In fact, the statistic is so low it is considered a rare disease and therefore excluded from clinical trials. In San Antonio, I met 3 women with ILBC and what is the response when they ask “What About Us?” Triple Negative Breast Cancer makes up ~15% of breast cancer diagnosis and while there are studies involving this subtype, there has yet to be an inhibitor that blocks the disease from developing after initial chemotherapy, surgery and/or radiation are complete. Early stage Triple Negative Breast Cancer is an aggressive form, but if one can get to the 2-year, 3-year, and 5-year mark without progression, the risk of recurrence drops significantly! It is great that women are participating in breast cancer clinical trials, but it is imperative that the participants of the trial represent a diverse group. Otherwise, we would be doing ourselves a grave disservice in our understanding of how these new drugs preform for African American, Hispanic and Asian (etc.) women if the majority of participants are white/ Caucasian women. I was glad to see that within the General Sessions, researchers were highlighting the diversity and ethnicity of participants within their trials. Our role as patient advocates is to continue to inform women that their participation is critical and encourage them to seek out clinical trials and to get involved. A few great resources include: Count me In : https://www.broadinstitute.org/count-me-in All for Us: https://www.joinallofus.org/en Clinical Trials through the NIH: https://www.clinicaltrials.gov/ Among the patient advocates present in San Antonio, there was a great sense of camaraderie and that those of us who are privileged are able to leverage that status in order to raise the tide so we all can float up! Brushing Up on Your Advocacy Skills Part of advocacy is learning. Being able to speak the language and understanding the “rules” so you can enable change. I thoroughly enjoyed learning about the science of breast cancer but after 4 days of intense research presentations and discussion, I am also self-aware, know my limitations and recognize the areas I need to develop. For example: What is the process for changing regulations when it comes to being able to participate on clinical trials? In the advent of medical marijuana, why are we not allowed to travel with it on airplanes, but in light of an opioids crisis, TSA has no problem with us bringing oxy across state lines to help manage our pain? How can advocates be part of the discussion when it comes to national and global guidelines on breast cancer best practices and determining the gold standard The list can go on and there are resources out there to help you hone in on your advocacy skills and make a difference not only in your lifetime, but for all of those that follow behind us until we find a cure for breast cancer. Patient Advocate Resources and Trainings to Consider: Project Lead: http://www.breastcancerdeadline2020.org/get-involved/training/project-lead/project-lead-institute.html Komen Advocacy Programs: https://p2a.co/cgXisY6 The Research Advocacy Network: https://researchadvocacy.org/advocate-institute RISE Advocate through the YSC: https://www.youngsurvival.org/get-involved/be-an-advocate/be-a-ysc-advocate#become-a-rise-advocate
- Understanding Aromatase Inhibitors in Breast Cancer
Aromatase Inhibitors (AIs); If your tumor is hormonal driven, then these two words have probably been thrown at you and around you several times during and after your treatment journey. They are often referred to as the dreaded post-treatment drugs or even more colloquially as the “good/evil drugs”. For those who have no clue what AIs are and what they do, AIs are drugs associated with endocrine therapy. This type of treatment is used for breast cancers that are estrogen and/or progesterone positive. That is why it is extremely important to maintain a healthy weight and engage in a consistent exercise routine which involves both cardio and strength training. It is recommended to do 30 minutes of exercise 5 days a week, (or a minimum of 150 minutes per week). If you are not currently in the habit of exercising, start off with a brisk walk a few times a week and work up from there. Why Aromatase Inhibitors? If your cancer is hormonally driven, your oncologist most likely will recommend taking this form of therapy for a period of time ranging from 5 to 10 years. Because these drugs block the development of estrogen in your body, it significantly decreases the changes of an ER+/PR+ cancer returning. Tumors which are negative for estrogen, progesterone and the HER2 protein do not respond to aromatase inhibitors and therefore hormonal therapy is not prescribed to those diagnosed with triple negative breast cancer (TNBC). This is where the colloquial phase “good evil drugs” come into play. Ask any TNBC thriver and they will say, “the good thing about being triple negative is that they don’t have to take drugs like tamoxifen or AI’s, but the bad thing about being triple negative is that they do not take drugs like tamoxifen or AI’s!”. The grass is always greener. Aromatase Inhibitor Drug List There are three aromatase inhibitors that have been FDA approved: anastrozole (Arimidex®), letrozole (Femara®) and exemestane (Aromasin®). A breast cancer cell, on its surface has a lot of different receptors to bind with different chemical compounds within the body. One of the receptors it has is for estrogen/ progesterone. So basically, anytime some estrogen binds to that cell it causes that tumor to grow. The tumors are essentially fed by estrogen or progesterone. The AI drugs prevent this binding from happening by drastically minimizing the level estrogen/ progesterone produced and hence inhibit the cancerous growth. Aromatase Inhibitors Side Effects Now, this might seem well and dandy but the side effect of these AI drugs has proven to be no joking matter. Serious side effects such as heart problems and osteoporosis can be a result of this classification of drugs. Most cancer survivors experience intense joint pain, drastic bone loss, sudden weight gain, extreme fatigue, and loss in libido. These are just a few on the list. The one thing we all know is that most survivors react differently to the kind of treatments they are on. Women share how being on AI drugs has caused them crippling joint pain and stiffness. It’s not uncommon to hear our SBC community members joke about being young on the outside and feeling like 100 years old on the inside! These side effects are caused primarily by estrogen deprivation. To help combat the side effects of osteoporosis, doctors may also prescribe Zometa. This is a drug that helps to prevent the weakening, breaking of bones, or any complications that may come from advanced staged breast cancer. In early stage breast cancer, Zometa has been proven to decrease the chance of the disease spreading to the bones. As breast cancer survivors, we are usually content with anything our oncologists suggest as long as it prevents cancer from coming back or progresses further, even if it means we suffer the side effects. But with AI drugs, there has been some progress on how to battle these side effects. With the recent spotlight being shined upon AI drugs and the advancements in seeing how patients are reacting to it, treatment options can be tweaked to help lessen the side effects. Talk to your oncologists and see if he/she could switch you through the different AIs to see which one has the least amount of side effects for you. At the end of the day you must evaluate the quality of life you are living. These are important conversations to have with your medical care team and loved ones so that you can design a plan that is in YOUR best interest. Personally, I was on all three of the AI’s until I landed on Letrozole. As noted earlier, everyone responds differently to this therapy. Unlike chemo, or radiation where the treatment plan felt more like a given and there was little room to negotiate, when it comes to AI’s, because we are going to be on them for 5-10 years, it’s important that we adjust and tweak as necessary so that we can have the best outcome for us, and that outcome and those decisions will look different for everyone! Aromatase Inhibitors Vs Tamoxifen Both Aromatase Inhibitors and Tamoxifen are hormone therapies, but each behaves differently. Tamoxifen blocks estrogen receptors on breast cancer cells while AIs are used to stop certain hormones from turning into estrogen. They both tend to have different benefits and side effects as well. AI's, compared to tamoxifen, have fewer clotting issues and lower rates of uterine cancer while tamoxifen benefits include better cholesterol levels and lower risks of osteoporsis and cancer in the other breast. But tamoxifen has a longer list of side effects than AIs, and these include stroke, depression, cataracts, uterine cancer, and blood clots. Still, each patient is different and can respond differently to each treatment so it's important to discuss the pros and cons of each with your doctor. Natural aromatase inhibitor alternatives Yoga, swimming, walking on the beach are examples of activities that engage your joints without exerting them. It might seem silly that exercise is the only solace you can find to aid these side effects. But there is hope still, at least in the near future. Natural AIs are fast becoming a new area of research. For example, researchers have found that certain kinds of tea extracts have shown to inhibit aromatase. There are also edible plants and fungi that can have the same effect. There are even some fun options like coffee, spicy food, beer, and wine! (Yes, I was pretty excited about this too!). No part of this survivorship is easy. It is frustrating that the pharmaceutical good comes with some hardship and longer term side effects we must manage. However, communicate your pain, doubts, and fears to your peers, medical team and most importantly to yourself. There are always solutions out there and we can find them. And we will search till we find them!
- Perjeta and Herceptin
By Jasmine Shukla Last updated 4/1/2021 Breast Cancer is the second most common form of cancer (in women), after skin cancer, and affects 1 in 8 women. Breast cancer impacts a patient's physical, mental, and emotional well being while also affecting those who are caring for them. Women suffering or recovering from breast cancer often find it difficult to lead a normal life and struggle to revert back to their life before they were diagnosed with this life-threatening disease. This struggle stems from the severe and excruciating treatments that often accompany breast cancer, even when patients know that these treatments are mandatory for survival. In the past few years, however, the pattern of treatment and chances of recovery have been bolstered significantly due to the innovations of several useful drugs, medications and therapies. Perjeta, Herceptin, and at times, a combination of both can be successfully applied - treatments for those diagnosed with breast cancer. Perjeta Background Perjeta (Pertuzumab) is a prescription medicine approved for use in combination with Herceptin and chemotherapy for use prior to surgery in patients with HER2-positive, or early stage breast cancer. Perjeta can also be prescribed for use after surgery has taken place in order to prevent the recurrence of HER2-positive breast cancer - as the risk is quite high during this period. The specifications of both these drugs mainly focuses on stopping the growth of cancer cells right from the beginning. Herceptin Background Herceptin (Trastuzumab), is an application used as a medication against HER2-positive breast cancer both during the early and/or advanced/metastatic stage for stopping the growth of cancer. It has been approved by the US Food and Drug Department. Herceptin, in the early stages, can be employed as a regimen (prescribed course medical treatment) portion along with chemotherapy regimen which contains an anthracycline for lessening the risk of breast cancer recurring. The Path to Perjeta The drugs mentioned here are monoclonal antibodies, i.e they bind to specific cells or tissues within the body and function as immunotherapy for the patients. Herceptin was introduced about 15 years ago in order to target HER2 as a clinical treatment for patients with breast cancer. However, Herceptin alone was not proving to be sufficient enough to fight against it as most patients with HER2-positive metastatic breast cancer displayed a progression in their disease rather than an improvement. This result indicated that new therapies were needed which, as a consequence, lead to the invention of Perjeta. Perjeta and Herceptin Combination Perjeta, together with Herceptin, plus Docetaxel (a chemotherapy medication applicable for treating a number of cancers like breast, skin, neck, etc.) has become a benchmark for HER2 positive metastatic breast cancer patients. Perjeta, when administered with Herceptin provides synergistic activity as per clinical and preclinical data. Perjeta and Herceptin Dose: Perjeta and Herceptin are administered every 3 weeks in the following amounts of doses: 2 ways of giving doses of both of these drugs to the patients- 1. Loading Dose, an initial higher dose given at the start of any particular treatment course before dropping down to lower regular dose, also helpful to drugs that requires elimination from the body at a slower rate. For Perjeta, Loading dose: 840mg with an infusion time of 60 minutes (volume with respect to flow rate). For Herceptin, Loading dose: 8mg/kg with an infusion time of 90 minutes Chemotherapy varies as per the regimen. 2. Subsequent Doses, the normal/regular once taken periodically. For Perjeta, Subsequent dose: 420mg with an infusion time of 30-60 minutes For Herceptin, Subsequent dose: 6mg/kg with an infusion time of 30-90 minutes Chemotherapy varies as per the regimen. Herceptin is a 1 year treatment, taken every three weeks, resulting in about 17 or 18 infusions. Side effects are pretty well tolerated, though you may experience fatigue, loss of appetite, nausea, headaches, runny nose, sore throat. Perjeta and Herceptin Cost: Prices of these drugs' doses are around $7.93/mg and $6.43/mg for Perjeta and Herceptin respectively. As observed these treatments normally have significant expenses that are unaffordable to most patients falling under low income groups. However, there are certain insurance plans available that help cover these expenses to some rate. It is usually advised to talk your respected doctor regarding the cost and expenses and coverage of insurance properly and satisfactorily. In addition, both of these drugs also have certain side effects (which are elaborated on in another blog (Side Effects of Perjeta), and therefore must be taken under medical observation and after proper consultations.
- My First Ironman
By Nicole Mancini Originally published in Crabbies, Jellies, and Iron by Susan DiPlacido. First Ironman Nicole Mancini has always loved running. She has found memories of her dad taking her to the track where she would ride her bike as he would run. Then, as she took it up, it always helped her clear her head. In 2015 she did her first 5K, and while there she noticed Athletes Serving Athletes, which is a non-profit that empowers those with disabilities to compete in mainstream running, and, at the time, triathlon events (ASA has since limited their scope to running events.) Nicole was impressed and intrigued. Thus, began her athletic and helping hot streak. She signed up to become a running wingman and began with 5K events. Meanwhile, she watched as some of her teammates trained for wingman positions in triathlons. Nicole didn’t even know how to swim. But something that silly wouldn’t stop her. She started swimming at the Y and attended ASA’s triathlon camp while competing on the run portion in a sprint tri in 2016. She watched as the founder of the group trained for Ironman Boulder with an athlete, and Nicole thought it was a great gift. She did her first Olympic and half distance in 2017 and was ready to sign up for her first 140.6. On December 21, 2017, Nicole was officially diagnosed with invasive early stage breast cancer. She had already endured numerous scans, tests, and mammograms to get to the diagnosis. Hormone therapy began the next day and she underwent surgery on February 28, 2018. She had a double mastectomy and her hormone therapy is still ongoing. In May of 2018 she raced Chattanooga, 70.3. In 2019, she also raced Eagleman and Atlantic City 70.3 just two weeks prior to IMMD. Though she has a small circle of supportive training friends, the long demanding training hours made her husband and 11-year-old son think she was a little nuts, and the schedule was a bit frustrating for the family at times. But she needed to do this race. Cancer is chaotic, and she wanted the structure and routine of training, . She had been drained of her spark and passion, and she was looking to reignite that! She wanted to find herself again. Training was particularly hard on Nicole’s body. She also battled a possible Lyme disease scare and enlarged heart. She was often sick, her hair fell out, her joints ached, she suffered night sweats, and insomnia, heart palpitations, and drastic mood swings that further exasperated tensions in her home. But she persevered and kept on going. She had to take some days off, but she didn’t quit. The jellyfish were a concern for her, because she’s been stung before and reacted very badly. In fact, she cried on the morning of the race. But if everything else didn’t stop her, jellyfish weren’t going to either. She suffered multiple stings, had to reapply cortisone several times along the way and her feet got swollen and purple. All through the run, painful blisters continued to worsen. She promised herself should would never do another Ironman again. Team 360 which is an organization similar to ASA was manning the aid station at the bypass. Nicole knew several people there and their hugs and cheers, along with pictures of their athletes, were just the inspiration Nicole needed. Quitting wasn’t an option. She had to do this to show others that it is possible. She wanted to inspire someone else, to give her friends who are struggling in chemo something to look forward to. To prove to others that they’re capable of so much more than they think. It was her 1 year and 7-months cancer free anniversary. She made it through that. She had been looking to reignite her spark. Something must have sparked in her that day because she set that race on fir and successfully crossed the finish line. She didn’t just find herself at the end, she found an Ironman. And plenty of others have found something else through her: Inspiration.
- 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