FAQ's: Chemotherapy - Piqray
What do I need to do before starting Piqray?
We recommend that you ensure that your team is aware of your “normal” when it comes to your glucose levels and other key metabolic measurements. This will be slightly different for everyone and it’s important that you know so that you can help them identify when something has changed. Some of the things that you should ask about are: 1) purchasing a home glucose monitor and the strips (check with your pharmacist for recommendations, but don’t forget that the strips are the expensive part because you need a new one each time you test); 2) Baseline fasting bloodwork (metabolic panel, cholesterol, hemoglobin); 3) Find out from your team how many patients they have with Piqray so you know how much of a resource they will be for you; and 4) don’t forget to have over the counter remedies on hand as well as potential prescription options.
What should I expect in terms of bloodwork?
To monitor for blood sugar and kidney problems, expect the following monitoring:
- Baseline fasting bloodwork (metabolic panel, cholesterol, hemoglobin) before starting Piqray - fasting glucose on day 8 - another full bloodwork on day 15 - monthly bloodwork on an ongoing basis
Who else do I need on my team?
Most oncologists won’t be as familiar with managing blood sugar levels as an endocrinologist. Endocrinologists usually see people with diabetes or other blood disorders. They will have a different perspective than your medical oncologist and may be able to offer information on dosing of the medication that helps to control your glucose. We recommend that you ask your medical oncologist for a referral to an endocrinologist who has some understanding of cancer and cancer medication and be sure that your endocrinologist collaborates with your medical oncologist to ensure that all aspects of your care are addressed.
Additionally, in light of the recommended diet changes (more on that below), a nutritionist may be a good option.
Does everyone have high sugar levels (a/k/a hyperglycemia)?
Increased blood sugar is a known and frustrating side effect of Piqray. It is found by monitoring your glucose levels (see above) or, sometimes, by symptoms like increased thirst frequent urination. Not everyone has this side effect. The main thing is to know your normal, follow your patterns and understand what is happening in your body as a result of Piqray. Don’t forget that a person on Piqray may also have hypoglycemia, when the blood sugar is low. A good rule of thumb is that if your blood sugar is 60 or around 60, you should definitely get in touch with your team and have some juice on hand just in case.
There are medications that are often prescribed by an endocrinologist to reduce your blood sugar such as Metformin and Jardiance, which you can discuss with your team.
If I have hyperglycemia, does that mean I’m diabetic?
Based on the study of Piqray and the experiences of men and women on and off Piqray, the affect on blood sugar is not permanent and a diabetes diagnosis is not a foregone conclusion. Blood sugat is affected while on Piqray and these symptoms will disappear once Piqray is discontinued.
What about the rash?
2 days before starting Piqray, start taking an antihistamine in high doses. Claritin is one option at double the ordinary dosage to begin. Your team may have a specific recommendation and you should always follow their lead. It is our strong recommendation that you get in touch with your doctor immediately if you develop any rash on any part of your body to nip it in the bud. While some members of the group have had to stop taking Piqray because of the rash, most do not, as it can be managed with antihistamines and goes away within a few days.
One other tip that some of our group members have benefitted from is if the rash isn’t too severe, to simply increase or continue antihistamines for a few days. You might consider taking a picture or marking on your body where the rash is starting so that you can easily see if it is spreading. Please follow your doctor’s instructions if they differ; at the same time, suggesting this option may be worthwhile.
Another helpful suggestion by a member's medical oncologist was to only take cool/lukewarm showers, avoid hot showers, until rash is gone. It is soothing and helps take the "heat" out of the rash.
What if I get mouth sores?
Definitely check with your team to see if your doctor has a preferred solution. One thing that has helped other members is to use dexamethasone mouthwash to swish around mouth and gargle for 30 seconds, then don’t eat or drink or brush teeth for 30 minutes, 3 times a day. Some members find that chemotherpay drugs gives them dry mouth and the biotene mouthwash or mouth hydrator helps with that and can prevent mouth sores.
How do I manage nausea?
While nausea is a side effect of several chemotherapy drugs and specifically for Piqray, nausea can also be an indication that your blood sugar is elevated.
Make sure you have over the counter (OTC) and prescription remedies on hand. Sometimes prescribed medication like Zofran works the best, sometimes other methods. Some over the counter options some members have suggested are: Ginger, smelling alcohol pledgets, eating small frequent meals, peppermint tea.
How do I manage diarrhea?
While diarrhea is a side effect of Piqray, diarrhea can also be an indication that your blood sugar is elevated.
The time to call your team is if you have more than 3 events in a day. Imodium or lomotil can be used to get it under control as well as following the BRAT diet. Since most of us have had to change our diets to reduce and/or eliminate carbs and adding back limited carbs can help your digestive process.
What about diet changes?
Not everyone needs to change their diet, but the hyperglycemia caused by Piqray can often be managed by diet changes without the need for other medication.
The keto diet is the most often recommended diet, but realize that even with diet changes, you may still see blood sugar spikes. Generally, avoiding sugar and complex carbohydrates is key. Remember that not all carbs are equally turned into glucose. Many members report a change in the taste of food and having a continuing metallic taste in their mouths, which can also inhibit the desire to eat. Many members will post food ideas and suggestions in the group and we would encourage everyone who have found good nutritious options to share!
Can I have a PET scan while on Piqray?
Most PET scans utilize a radioactive agent that reacts with glucose in the body. For this reason, every patient getting a PET scan undergoes a finger stick to ensure that glucose levels are low enough for a PET to have a reliable result. The rule of thumb is that the glucose test must result in a number under 160. Since many of us have higher fasting blood sugar levels at times, it is important to take your Piqray does at least 24 hours before the PET and to focus on high fat and low carb meals the day before the PET.
Disclaimer & Additional Resources
Many thanks to Silke, the admins, and all of the #piqraypioneers who have so generously contributed to everyone’s knowledge! Just a reminder, none of the contributors to this list are medical doctors, although we did get this list reviewed by scientists and medical oncologists before we finalized this list. At the same time, before taking anything please talk to your oncologist and/or pharmacist. But please take them seriously, especially controlling your sugar levels and the rash. Good luck, and don’t fear the side effects, beat them before they beat you
Piqray Patient Info: https://www.us.piqray.com/metastatic-breast-cancer/about- piqray/understanding-piqray-treatment/?site=PIQ- 1221441GK100102&source=01030&gclid=Cj0KCQjwg8n5BRCdARIsALxKb94I KXaN1EM9NHVQVLYacRLpYbRLSDn58T7hQISkf3JQXWiFSRcP1h0aAlLuE ALw_wcB&gclsrc=aw.ds
Piqray Prescribing Datasheet: https://www.novartis.us/sites/www.novartis.us/files/piqray.pdf