I just had my 2nd pet scan results back and it was not good. The report showed that I have increased metabolic activity in tumors on both sides and new mets are found in liver. I have been taking Tamoxifen and Kisqali for the past 6 months, and I thought things are going well until this pet scan suggested otherwise...My husband and I were crushed yesterday when we got the results.
My oncologist wants me to start a new combo with monthly Fulvestrant injection and Piqray. I have read some terrifying review about Piqray. Do any of you ladies have experience with this regimen that you could share with me? Is Piqray a harsher drug than Kisqali? I am really nervous about this new treatment. And I fear if this combo doesn't work then I have limited options down the line.
I would be extremely grateful if you could share with me any insights, advice and suggestions! Thank you all so much in advance for your kindness and support!
Blessings,
April
Written by
hopeoflife
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Hi there. No insights as such but following as my sister is in same position. We see our oncologist on Monday so might know more then. I fear Piqray too
Thank you! I am also seeing my oncologist again Monday. I hope that I will be able to ask questions and get a better understanding about this drug and my options. I will pray for your sister. I hope that we will both have a good meeting and do great with the new treatment!
How did you get on today? We are waiting for the results of the gene test and a PET scan. Given the alternatives I’m now rather hoping we can have this combo
Thank you so much for checking on me! I feel stressed out coming out of the meeting today. My oncologist said that I may have limited options if this new combo doesn't work. The next line of treatment is IV chemo which I really don't want. I weigh about 93 pounds so I am dreading the Fulvestrant shots. I am grateful that we have this option. I hope that your sister can be a candidate for Piqray. I pray that this new combo will just do magic and knock things dead!
Gosh I really do hope we can both get it. I don’t understand these lines of treatment. There are protocols but people tend to have things in a different order. Have you had oral chemo already? X
Dear hopeoflife--I am responding to your post of two years ago. Where you were then is somewhere near where I am, today. Please tele how the Fulvestrant and the Piqray combeworked for you. I hope it is still working and that you continue with good health.
I hope to provide some level of encouragement! I’m on Piqray and Fulvestrant since Dec of 2021 with outstanding results. Almost NED !! Piqray is recommended if you have the Pik3A mutation and Piqray is a beast in cleaning up that’s for sure. Side effects differ for everyone and income with a host of suggestions on mitigating these. There is also a Piqray Facebook group I strongly suggest you join. Private message me if need be but don’t be afraid. I feel blessed that this drug is working for me. Heart hugs !!
Thank you so much for sharing your positive experience with me! After reading so many dreadful reviews, I definitely need some encouragement for this new treatment. I am so glad that Piqray works well for you! I hope you get NED soon!!
I have been on Piqray and Fulvestrant for just about two months, I was also nervous to take it, I fact, I almost took a pass but I’m glad I didn’t.
Everyone’s body is different but so far for me, I haven’t had any of the “scary” side effects that are talked about. I have had quite a bit of nausea but we finally figured out a good dose of meds for that (we reduced the Piqray to 250mg and that seems to have done the trick as well). I take Zyrtec each morning to prevent a rash and I just make sure I don’t eat too many sweet things. My blood sugar has gone up but not enough to warrant Metformin.
I was on Ibrance before and I would say Piqray has been better for me. My blood work is all back to normal (no more neutropenia!!), and my hair is growing back.
I would try not to go to social media groups for Piqray because that seems to be full of horror stories. See how your body tolerates it and work with your team to figure out how to make Piqray work. I think we’re very lucky to have another line of treatment to help us.
Thank you so much for sharing and your advice, Allison! This is so helpful and nice to hear. I really love the fact that your blood work is all normal and your hair is growing back. You are absolutely correct that we are lucky to have this option. I pray that my body will tolerate this drug well and it will do magic.
I was on Piqray for 6 months. Unfortunately, it did not work for me. I had mouth sores, fatigue, and high glucose levels. I was on metformin and Jardiance for the glucose levels. My lips would also randomly swell and I looked like I had collagen injections! There is a Facebook group that has lots of information. This drug is highly successful for some. So don't be afraid. If you experience side effects, they can be managed. I wish you the best!
Thank you so much for your kind wishes and encouragement! I am sorry that Piqray didn't work for you. I hope that you have other options that work great for you. Best luck and wishes to you as well!
Hi— I am in similar situation . I had progression on Ibrance and Exemestane and got tested from PK13 mutation and had that mutation.
I’ve been on Piqray for 5 weeks and really doing well. My blood sugar shot up to 325 after 1 week so I started Metformin and reduced Piqray to 250 mg down from the 300 dose.
I started Metformin 2x a day and didn’t need that much so now taking it 1x day with Piqray in the evening.
I did have some nausea starting— but now that blood sugar is ok nausea and appetite are better. It’s really not any harder than Ibrance, for me. Actually, being off Exemestane my joint pain is gone.
Try not to worry and take the leap of faith with this.
Thank you so much for this, Cindy! I have been so nervous and worried about this new treatment. The positive experience from you and other ladies really gave me great relief and encouragement. I hope that you will continue to do well and feel great! Best wishes to you on everything!!
Here are some helpful and solid suggestions for anyone on Piqray:
1) Piqray by nature causes glucose to go up. Reduce carbs and sugars. If you are hung up on sugar, starches and such reduce your intake. Cancer hates Piqray and the Keto diet. If you join the Piqray Facebook site watch the video from the doctor who developed Piqray.
2) Zyrtec is perfect for prevention of rashes.
3) Mouth sores. Put your Piqray capsules in these gel capsules before taking. No mouth sores
4) I recommend taking them at night
5) Piqray in my case caused me to lose weight in a hurry. Side blessing.
If your blood sugar - glucose starts skyrocketing it’s likely because you’re eating food that contributes to pre diabetic levels. Your doctor will likely prescribe Metformin 500 mg in the am with your meals and 500 mg at night. Some actually have 15 mg of Jardiance added in the morning.
I lost about 35 pounds that I graciously had to give on a Keto diet and Piqray. That said now I need to gain weight in a healthy way. Nuts, avocados etc. In 6 months my tumor
Markers plummeted to 15 for the CA 27.29 - well below the normal range of less than 38. Done correctly this Drug is amazing !!
I'm going on this drug soon. What does "Mouth sores. Put your Piqray capsules in these gel capsules before taking. No mouth sores" mean? How do you put the piqray in another capsule?
Dear Adele-Julia-----------Glad to see you on this forum hale and hardy, two years ago. I am going to be on start up dose of Fulvestrant before beginning Piqray. Did you take Piqray with or without Fulvestrant? Please answer soon. Need info before dr calls me back and then before Friday and the Fulvestrant start-up dose. I've ha that one before and felt that it nearly took me away from this earth.
Thank you for your quick response. The oncologist just called me and we negotiated. My liver enzymes are very high and I understand that Fulvestrant is very hard on the liver. So she is starting the loading doses at one injection instead of two for my 95 lb body that may not be able to take much more.
I pushed the send button before I was finished. It has been two years since you sent that message. Your wording implies that you are off that drug combination. What are you now and how is life treating you in general? It is good to see you on the forum after two years. It does tell the rest of us that you are still fighting the good fight. More power to you and God bless! Frances
I know ! I’ve been on the Facebook groups for my treatments since I live in the US. Doing well ! After 16 months on Piqray I developed skin Mets and went to Enhertu. Strong 10.5 run on that . Kept all my hair and no side effects. Great run. I was so disappointed when it stopped as a new liver met appeared. I’m now on Kisqali as a first line drug again. However there is still Trucap and Trodelv
I have been on Piqray for a year. It’s the loose stools that are the killer. At 4:30 am today and at least three times and up to six times a day. On Tylenol 650 and oxycodone when needed. My CA 27.29 is hovering at 175. I have type2 diabetes which I take Jardience and another drug. Metformin makes me sick. And so does Glipizide. I wear a Libre2 to monitor my glucose. I got a PET scan two days ago. It looks like the cancer is pretty beat up by the Piqray, but the report is not easy for non-medical folks to read. For the cramping I have a heating pad. For my burning tush I use Lidicaine and hemorrhoidal gel, not cream.
Best to all navigating this disease. Each of us has a different journey.
Should you get type2 diabetes, don’t take insulin as it makes the cancer grow. Yikes!!
Dr Flory at MSK (Memorial Sloan Kettering) is an endocrinologist specialist who treats patients anywhere who have diabetes when on cancer medication. Only 20 percent get it. So lucky me. I live 300 miles from him and he monitors my Libre2 Science is working with us ladies. You can reach out to him if this situation occurs.
So I need to sleep, as I am spending the day with my daughter tomorrow. Everyday on the right side of the grass is a blessing.
Thank you so much for sharing this with me and your recommendation on Dr. Flory, Reenie! I pray that we all have many good years ahead. Best wishes to you and good night!
The most important lesson I learned when I first joined this board (and it was after a long while) is that everybody has different reactions to the same medication. I am now on everolimus that for many of the women they had developed mouth sores. So far two months and no mouth sores (although other side effects).
With Ibrance (which I was started on) my week off was hell. I never felt so sick. So that only lasted three months for me bc I could not deal with the week off. I could barely get out of bed and I live alone.
I also learned NOT to google too much. I did that in the beginning and would get myself all worked up. Now, I may google if I am not sure if something is a side effect or just my age. Not everything is cancer related.
So one person's bad experience may not be one that you even experience. And that was an important lesson to learn. I hope it is not as bad as you may get yourself all worked up about. Sometimes the body just needs a little time to adjust and you will be fine.
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Started on piqray & fulvestrant yesterday
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