Hi all!! My doctor was mentioning possibly changing my protocol and went through a list of things to try. Her first one on the list of Piqray. I have heard a lot of scary stories about Piqray. So, I'm hoping that anyone on it can let me know how their side effects played out, if they were able to be mitigated and controlled, and how well it has worked on the breast cancer. I'm trying to plan ahead and I'm afraid of saying no to a medication that may be more manageable than I am thinking. Please share any information you may have, as I'm a little scared and concerned......about the progression and how this medication may play out in the quality of my life. Thank you all for listening and hopefully sharing information!! Take care!
Piqray and its side effects - SHARE Metastatic ...
Piqray and its side effects
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Fiercefighter13
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I’ve been on Piqray since Dec 2021. Best thing ever. I’m close to NED ! There is also a Piqray Facebook group. My side effects have been weight loss . I do have many hacks I’d you decide to get on Piqray !Julia
Thank you Julia!! I can’t tell you how happy it makes me to hear such a positive experience with Piqray. You have given me a good reason to not be so fearful and be willing to give it a go! I really appreciate your response, and you have given me some peace of mind!! If you don’t mind I’d very much like to know your hacks and any advice on successfully taking it. I believe being prepared ahead of time is the best road to success. Unfortunately I’m not on Facebook, but I’ll take all advice possible in this group! Take good care!
Excuse my ignorance. What are hacks?
Jacks are little tips and tricks !
Hi Julia! Tips and tricks, are what I meant by hacks. Any advice on lifestyle, diet, anything at all to help this medication work and mitigate any side effects is hugely appreciated!!
I would suggest getting size 00 gel caps on Amazon to put in the Piqray in for starters. This helps avoid mouth sores and upset stomach. Mouth sores for certain !
O.k., that is easy and mouth sores are awful, so yes, can do! Does Piqray come in a tablet form or a powder? I'm not familiar with it's delivery form.
Tablet. Google Piqray and click on images. They are oval or circular shaped
Good to know, I took some good notes, and when the day arrives I will be ready with the 00 gel caps!!
Get a second opinion. If you don't feel comfortable with the side effects or decisions your oncologist makes it is a good option. I know I sound like a broken record and I have an excellent second opinion doctor. Good luck to you on your journey through Cancer.
Cheers, June S.
Hi June S! Thank you for your advice, it is very well received. My current doctor is my second opinion....but I would have no problem seeking out a third, fourth or even fifth opinion. My first doctor was awful, bossy and refused to ever listen to my opinions, wants and needs, or even my own thoughts for my own body. My new doctor has been treating me now for a little over a year. She always tells me we are partners in the journey, and has always stuck to her word on that. She's knowledgeable and a great listener and we have collaborated on every decision. I do have a degree in microbiology, and she is always eager to listen to my research and opinions. I am always eager to hear her medical knowledge and opinions as well. I have compiled the current list of medications available to me for my parameters and my list has been from least physically offensive, all the way down to the ones that I consider my "not going there". I actually don't want to shelf any medications if they are reasonably going to give me not just quantity of life but quality of life. Piqray isn't on the top of my list, and honestly, I'm not sure it's at the top of my doctor's, but she mentioned it, and it may turn out to be a good medication for me. It's a matter of at what point to give it a try on my list. I'm trying to get live advice on ways people have been able to manage on it. Time will tell, and we are all different, and react differently to medications, but I've gotten some really good advice from people on this site on medication management which is great. I really hate this disease!! Anyway, thank you for your advice, as I said, it is well received. Take care!!
I am on Piqray. I take it at 7pm when I have dinner. I have type 2 diabetes from it. I have a special endocrinologist at MSK in NYC who specializes in this issue. Don’t take insulin as it increases the cancer. My CA27.29 cancer numbers went up two weeks ago and I will have another blood test on Tuesday to check them again and a pet scan on August 9th.
I feel good except for the diarrhea which comes several times… day and night. I have heating pads to handle the tushy pain. I use Vaseline liberally in my tush to lessen the pain and lidocaine and hemorrhoid gel (not cream) afterwards.
I hope Piqray continues to work as some other medications effected my emotions.
Everyone is different. Xeloda made me mentally off and my husband of 49 years told me I had a nasty streak on it, but he knew it was the medication. Glad I’m done with that one.
Best to you in your travels through this horrible disease.
Reenie… in Rochester NY.
I had a terrible time with diarrhea. I tried four different medicines in all sorts of combinations. A few weeks ago one of the ladies on the facebook group mentioned Budesonide 3 mg. It has worked beautifully from the first time I have taken it, I have had no diarrhea issues. Talk to your oncologist about it. Mine said he could see no reason not to try it. I wish I had known about it 3 or 4 months ago.
Best,
Audrey
Thank you!! I am taking notes from everybody offering advice. I'm hoping that if I choose to try Piqray I will be able to manage it with these great tips! I am hoping I can manage it once I try it, since it's one more tool in the arsenal against this horrible disease. Take good care!
Hi Rbeth! I'm glad you have been able to manage being on Piqray and hope it continues to help you for a long time. Perhaps Thrifty51's advice about the Budesonide 3 mg. will help you with the diarrhea? I'm taking notes from everyone on how to manage Piqray. It's interesting to learn that insulin helps the cancer progress, but it makes sense thinking about it. Are you on Metformin? What medications do you take to manage the diabetes? I hope it's o.k. to ask, I really want an arsenal of information to take to the doctor if that should happen. I live in a relatively small town with no teaching hospitals. I really trust my oncologist, she's knowledgeable and open to suggestions and thinking outside the box. However, I know that bringing options to the table when discussing my care, always helps us brainstorm and try new things that work! Did you change your lifestyle and diet when the diabetes set in? I ask, again, to have my arsenal on the ready for all possibilities. Any additional advice you can share with me is greatly appreciated!! Take care!
Hi, I have type2 diabetes and can’t take Metformin or Glipizide. I am on Jardience and Pioglitazone in the morning and the Piqray at night at 7:00PM. I do have diarrhea from every MBC medication I took. I also had a Gastrojujunostomy four years ago. The surgeon rerouted my stomach due to the cancer in my stomach lining. This is currently in remission. I have a PET scan August 9th. Best to all who travel this road. Reenie
Unfortunately Piqray did not work for me. I was on it for 2 weeks and developed a rash which became life threatening. I am currently on Xeloda that I am tolerating very well. Good luck and I hope it works for you if you decide to take it.
Thank you Poet21! Xeloda is on my personal list of medications I want to try after doing much research. I did mention it to my doctor and I asked if Xeloda could be tried before Piqray and she said that would be o.k. too. I have terrible eczema flare ups, I've had for years, and because of that, I have been worried about the Piqray rash that many suffer, plus the diabetic issues it can cause as well (I'm not diabetic). Eventually the list of medication dwindles down, as you know, and we all hope to be able to take as many of them as we can successfully. I'm so sorry to hear Piqray didn't work for you, but it's a great thing that Xeloda has, thank goodness there are many medicines to go to in this day and age!! Take care!
Hi,Piqray did not work for me. I tried three different doses. The first time, I developed a rash, the second and third time after the first pill I had a fever. Good luck to you
My doctor said Piqray is a very tough medication to tolerate for many people. I read somewhere that starting an oral antihistamine daily before starting Piqray can help with rashes, but does not avert them altogether. I developed a terrible fever that put me in the hospital on Ibrance when I first started, and it put me in the hospital for 5 days. Then started a lower dose 3 weeks later and managed well for 3 years, but my WBC and RBC were just so low, even on the low dose, we finally switched me to Verzenio. Now looking at progression.....damn. What medication are you on now, since Piqray didn't work for you, if it's o.k. to ask?
I was taking Zyrtec together with Piqray but it did not help. My tumor markers were going down within these two weeks o was on it until I developed that horrible rash. It does work for me and it’s so pity that I can’t tolerate it. The only dose I can try is off label 150 mg. I was on tamoxifen for three months but it did not work, progression, then I was on Xeloda for 8 months , progression and primary endometrial cancer that was operated, progression to 6 Mets in liver and others in addition to bones. Now I have been gone through 2 times of iv chemo abraxane which I hate. I hope that it will kill Mets and I will go back on pills. Good luck to you
It’s a tough and confusing journey, I really hate this disease. I am hoping that you are able to get back on the pills as well, and sooner than later. Take good care, I’m really wishing the best for you.
Thank you so much. I hate this disease and hope for cure. Good luck to you.
I just had my 8th infusion of Abraxane and luckily I don't find the side effects too bad. I am already a diabetic though, so not sure Piqray and some of these others are possible for me? I also don't know how long a person can be on Abraxane but I'm thinking not indefinitely!?
I hope and wish that you can be on it long enough so that you can return to getting on pills, or another easier to tolerate treatment. New treatments are on the horizon. SERDS are coming very soon and I've heard some great things about them. Also, a CDK7 inhibitor is starting trials early next year, and it has less side effects than Ibrance, works better than the CDK 4/6 inhibitors with less side effects all around, and of course, ERSo is supposed to start human trials soon. Also a new medication ERX-41 at the University of Texas goes into trials at the beginning of next year and both ERSo and ERX-41 are touted to "cure" metastatic breast cancer! Hold on dear fighter, we are getting closer to some really great medicine coming our way!
I have the third treatment today. I have nausea and vomiting and stomach cramps. Use pills. Also I started loosing my hair which is very upsetting. Some people report that they did not loose hair. How about you? My doctor also did not give me a definite time frame. I believe you can’t have it indefinitely. Based on other girls, they went on pils after Where are your Mets? Keep me informed. Best Marina
Good luck today Marina. I hope the treatment goes well. My hair isn't completely gone but it is very thin and my scalp is visible......what is there is very curly though, even though it was straight before chemo. My mets are in bones (2 years) and liver (2 months).
I see. Thank you for your reply. Good luck to you. How many treatments are you supposed to have. Did you ask the doctor?
right now it's 12 and I start number 9 this Friday.
Hi. Thanks for sharing. Did your doctor say what’s after this? Good luck on your pet ct
I'll be thinking positive thoughts for you today. I hope your treatment goes well, and your body can adjust to this treatment while you are on it. I've heard cold caps help with hair loss. I have a good friend who went through this treatment last year, and lost her hair, but it has already grown back into a short bob, and curly (her hair was very straight before chemo). I always thought losing my hair wouldn't be a huge thing to me, until it happened to me......At first I thought, my life over my hair, but it impacted me very much, my friend as well. Hoping and wishing good things ahead for you, take care and good luck today!
Thank you so much. Loosing hair is not as important but emotionally hard. I can’t eat because of nausea and vomiting.
Marina, I’m sorry to hear that you’re having nasty side effects from the of Abraxane. When I was on it I took Imodium and one Benadryl before I started my infusion. Also, I did not eat before or during my infusion. I had read somewhere that fasting helped with side effects. I would have dinner the night before treatment. And then not eat anything until after my treatment the next day. I always scheduled my treatment in the morning, so by the time I would get home after treatment it would be lunchtime. Basically I would skip breakfast and do a lite lunch and a lite dinner. I don’t know if this would work for you, hoping it might help, but you might already be doing something like this….
Thank you so much for your suggestions. I eat before and during the treatment. They did not give me Benadryl this time. Maybe this is why I experience these side effects longer than previous times.
Hi. I can’t stand it. I vomit all the time. It accumulates and I vomit more. Pills do not help. What treatment are you at now? Thank you
Marina, I am so sorry to hear what you are going through. You must be so weak…. Please reach out to your Oncology team and let them know what is going on. With you vomiting all the time you have a possibility of getting dehydrated, And that will make things worse.The treatment I am on now is Keytruda (Immunotherapy), every six weeks, and Zometa every six months. I was on the Abraxane for 4 months -six cycles, which consisted of 12 infusions. Sending you a gentle hug -I hope you feel better real soon! Liz
Hi Liz. Thank you so much for your reply. I just had an appointment with them. I probably would not be able to continue. What Mets do you have? Right now I have a lot and need an aggressive treatment. Keytruda is very mild. Also are you er plus her2 minus. Good luck
Hi Marina,I’m happy to hear that you talked about what’s going on with your Oncology team, though I’m sorry to hear that you’ll have to stop your treatment and switch to another. I am HR+ HER2-, my mets are in the liver, sternum, some lymph nodes. Wishing you all the best and may your next line of treatment be much more manageable than this past one and may it kick cancers butt! Blessings to you my dear 🙏
I did not stop my treatment yet. Still suffering. Thanks for your reply
Is it possible that they can lower the dose of the Abraxane? Instead of getting it full strength maybe only 3/4 strength? Maybe you wouldn’t have such a violent reaction to it at a lower dose, just a thought…
They lowed 10 mg. From 80 to 70. Did not help
It breaks my heart that even after lowering your dose you are still suffering….Did they say how long they are going to keep you on the Abraxane? Since your oncology team hasn’t been able to help you with side effects, do you have a palliative care team at your Cancer Center? I have heard that sometimes a palliative care team can be more helpful than oncology regarding side effects, pain, etc. I do hope and pray that you get relief soon! 🙏
Hi They are helping They gave me another pill. Thank you so much for your support
🤞this new pill helps and you start feeling better soon! Prayers for you 🙏
I have been on Piqray for almost two months and have nothing but positive things to say, I actually like it better than Ibrance. I also read all the scary things and have not experienced any of them. My Onc has me taking Zyrtec each day so I don’t get a rash but I’m asking her this week if I can stop it as I still don’t have a rash. I was a little fatigued at the start but that could’ve been the Fulvestrant, that is a new drug for me too. I wish you luck and hope you are feeling encouraged, this seems to be a great drug!
Oh thank you for the great information! I’m hopeful more than ever hearing some good stories. I was lucky with Ibrance, good for three years except my WBC and RBC were just too low for comfort, no other side effects. I am good with Verzenio, no side effects at all, never even had diarrhea which is typical for most. So now I’m hopeful, for a good experience and that it can push the progression back. I’m starting fulvestrant in 28 days (not looking forward to shots!) I never had side effects from Letrozole so I’m hoping fulvestrant won’t either. Thank you again for some good news! Take care!
I forgot to mention that WBCs/neutrophils all went back to normal changing to Piqray, another benefit. Fulvestrant was a little tough that first month because you get a “loading” dose, for me that was three different appointments and injections. Make sure the nurse injects it super slow, the nurse for my second dose went too fast and I had a horrible skin reaction, nothing that led me to the ER but it was not fun.
That is good advice! When you say low, low on the hip? I quizzed my doctor on the nurses and the fulvestrant shots, and yes....I too will have the loading dose of three sets of injections two weeks apart, then go to every 28 days. My doctor has assured me that the oncology nurses at her practice are really good at giving the shots and so far, after 13 years, she has had no one have a reaction or complain over the injections and how they are given. That gave me great relief to hear! My youngest daughter is a registered nurse working on her doctorate to become a nurse anesthesiologist, and she has given me a lot of pointers for things to ask of the nurses giving the injections. It's pretty unnerving, I have a phobia about muscular injections and I am working with my therapist to not freak out. As far as getting to normal WBC on Piqray, that is music to my ears!!! I have been low but normal on Verzenio, and it makes a huge difference in how I feel day to day, compared to my lows on Ibrance!
Not low on the hip but slow at injecting, it has to take 1-2 minutes each injection.
I will ask the nurses to do that for me. This is such a hard disease to manage mentally, and physically, but we fight, we stand up again each time we are knocked down.....and maybe some day the cure will be here for us too. I'm really hoping ERSo and ERX-41 come about soon and in time for all of us.
I have faith in ErSO and erx 41 but it’s taking too long
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