Piqray or Xeloda? What were your experience?

[Jonesburger]

Hi everyone. Unfortunately my scans show progression w/ new bone lesions. Good news is my mets are still all in bones.

I now have to choose my next treatment by next week: Piqray + Faslodex or Xeloda.

Here are my thoughts:

Piqray cons: horrible, side effects. Could cause diabetes and terrible rash. Relatively new...my cancer center only has 3 patients on it. My onc has none.

Piqray pros - targets my mutation.

Xeloda pros - side effects not as bad as Piqray. More established drug. Onc sees good results and patients on it for years.

Xeloda cons - not as targeted as Piqray.

I would be grateful for your suggestions, recommendations, thoughts to help me choose.

[klhowe]

I just spent 3 months on Piqray. I got the mouth sores, diabetic sugar levels and severe diarrhea. I lost 20 lbs.

In those 3 months my liver tumors trippled in number and the two I originally had doubled in size.

Go to the facebook Piqray group and read about what others are experiencing. I think for the small number that it is working for, at least that amount have significant progression and extreme side effects.

I am on to Xeloda. Which the women and my oncology pharmasists say is much much easier to tolerate than Piqray.

I realy wanted Piqray to work.

Oh, I basically did not leave the house for 3 months because of the diarrhea.

Wishing you the best,

Karina

[Jonesburger in reply to klhowe]

Hi Karina - oh how awful! Unable to leave the house...liver tumors tripling in size.. UGH! I’m so sorry this happened to you. Thank you for sharing your experience. This is so helpful to know.

FB group - yes it was the posts from the Piqray FB group that got me concerned about this drug. I knew about the high glucose and rash but getting liver mets...that’s a different story. This drug is frightening.

Good luck with Xeloda. I may be on that treatment with you. All the best.

[BangorBelle56]

Don’t know about Piqray but Xeloda exhausted me and gave me a terrible runny tummy. Felt life wasn’t worth living but had very little problem with the hand food syndrome. Everyone reacts differently, so basically you don’t know until you try. Xeloda was good for the liver mets . Best of luck.

[ChrisVict in reply to BangorBelle56]

Are you still on it and what did you do about runnny tummy do you mean diarrhea. It appears after affonitor that’s the next move.

[BangorBelle56 in reply to ChrisVict]

Just been on Fulvestrant and Denosumab For three months to give me some recovery time. Had my usual 9 week scans (Total body MRI and CT scan) on Fr and Sat. Oncologist on holiday But he phoned last night with a very brief Summary. Basically my liver and lung mets have grown but spine is stable. Will see him next week to see which chemo is next and the exact growth of mets.

[Jonesburger in reply to BangorBelle56]

BangorBella, thanks for sharing your experience. I’m so sorry to hear how the side effects affected your stomach and your state of mind.

I work full time (remotely for now) so the fatigue concerns me since I have meetings all day. My onc had warned me about the fatigue but she said she could adjust the dosage, etc if the side effects became too much.

Good luck with your treatments. I hope your side effects are less severe and your quality of life is better. Best, JB

[MacroMom]

I agree with all the comments about Piqray. I have the mutation too but it just feels too tough and unproven. I had a good 9 months on Xeloda till liver Mets progressed. If you haven’t already used the search here for Xeloda I recommend it; lots of helpful info for reducing side effects. Great that your Mets are only in your bones! Wishing you well with the next step.

[Jonesburger in reply to MacroMom]

Hi MacroMom and thanks for your insight. At this point, I’m leaning towards Xeloda and will turn to Piqray if/when Xeloda stops working. Hopefully by then, there’ll be a little more data behind Piqray and my onc will get a patient that’s on it. Currently, she has no patients on it and the entire cancer center only has 3 patients on it. All the best to you.

[rubyc1234]

I was on xeloda for a year and a half. Never had the hand foot syndrome but the problems with severe bloating and stomach pain were ongoing and lots of diarrhea. But I learned to manage it mostly with diet, and it was tolerable most of the time.

[Jonesburger in reply to rubyc1234]

A year and half. That’s great. I hope I’l be able to stay on Xeloda for that long. I hadn’t heard about the bloating. Can you share the changes you made to your diet? I suspect I would need to cut back on salty/hi sodium things to mitigate the bloating...

[rubyc1234]

I ate smaller more frequent meals and nothing after about 7 pm. Avoided spicy food and vinegary food. Bloating and belching were part of my life, some days worse than others.

Other women did not have this, but had the hand foot thing. So we are all different. Maybe you will not have the issues I did.

[Jonesburger in reply to rubyc1234]

Thanks rubcy1234, this was helpful.

[barbarac76]

Hi.

I have no experience with Piqray, but am currently being treated with Xeloda. I went from Ibrance/Faslodex to Xeloda when my cancer progressed to my liver. I have been on Xeloda since February 2019 with some good results - regression in my liver, then stable with the exception of a new mass which developed in my healthy breast, which turned out to be HER2+ (my original MBC is HER2-). I've stayed on Xeloda to treat the origianl HER2- cancer. My oncologist added Herceptin to treat the HER2+. Sorry, too many details.

My only notable side effect has been the foot part of hand/foot syndrome, but I have found ways to manage it. I did suffer from fatigue in the beginning, as I recall, but that has not been a problem since, thankfully. Of all my treatments, I have found Xeloda to be the easiest to tolerate.

I wish you well with your decision. Always an anxious time when you're changing treatments. If you go with Xeloda, let me know if have any other questions.

Barbara

[Jonesburger in reply to barbarac76]

Barbara, thanks so much for sharing your experience. I'm happy to hear you're till on Xeloda over a year later and that the fatigue eventually went away. Fatigue worries me a bit because I still work full time and often have to call into meetings. I hope I'm not so tired I'll end up cancelling/changing meetings around.

I decided on Xeloda and have informed my oncologist today. If any more questions come to mind regarding Xeloda, I'll def post it on this forum. I'm assuming I'll start on it early next week. Thanks again.

[Bettybuckets in reply to barbarac76]

Hi Barbara- not sure if you will find this but I wonder if you could update me on how you are doing with xloda? I’m at the end of my Ibrance run and doc is suggesting xloda? How long did it work for you?

[Sparky95]

I’m so glad you posted this question as I’m in a very similar situation. After 20 cycles of Ibrance/Fulvestrant my oncologist switched me to Piqray. After day 13 I broke out in a rash. I was taking Claritin 2 times a day to avoid that. I also had diarrhea, and raised glucose levels. The doctor was talking about trying Xeloda or Afinitor next but wants me to retry the Piqray one more time. I know we all want to have as many healthy days as possible. I wish you the very best.

[bubblystream]

I am having too many side effects from Piqray. I started 21 days ago. The past 12 days i have had high fever up to 103.7 Extreme mouth sores. Could hardly drink water. It getting better but the last thing to get better.

Rash from head to waste bright scarlet. Waist down it was lightly sprinkled.

Insomnia 5 night but its getting better. rash is gone. Its the first time i felt like i had cancer in the past 6 years.