I had some disease progression of metastatic ILC (sigmoid colon area thickening, and a new spot on the adrenal gland). I had a good run on Ibrance and Letrozole (Oct 2017-May2021).
Took a bit getting the workup, biopsy and receptor testing. I have a PIK3CA mutation - so 1st of June I started on Piqray (alpelisib) and fulvestrant injections (ER strongly +, PR-, HER2-). Now by day 9/10, I've got a pretty decent rash over much of my body. A known side effect. It doesn't itch really, but its pretty extensive. I see my oncology NP tomorrow and we'll discuss it. Any other ladies have experience with that?
Thanks, Tami
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tab78FN
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Yes, I started piqray in March and got the allergy rash about the same time as you. Took some extra antihistamines (cetirizine and chlorphenamine) plus 1% hydrocortisone cream and it passed over after about another week. Unless you are particularly allergic this should be the same for you. No recurrence of rash, tho skin is more generally itchy. I think the usual advice is to keep on with antihistamines. I take them for hay fever anyway so no big deal. Hopefully you will not experience anything more than this
Thanks for your reply! It helps to get a feel for how the course can go. My rash seems to be lightening up a few days later. I continue to take the daily Zyrtec and fortunately have no real itching. I'll see what the Onc team has to say but crossing my fingers to continue this treatment. Tami
I was on Piqray for 10 days. I had indigestion, heartburn, belching, stomach pain and bloating, mouth sores, fatigue, blurred vision and finally quit when I had to go to ER with anaphylactic shock. It came on instantly, my entire body with itchy rash head to toe, front and back and my lips were swollen. I'm now on Xeloda. Has anyone else been on Xeloda and what kind of side effects are you having. What is your dose? Mine is 2000mg 2x's day. Today is my first day and feel itchy and dizzy and weaker.
Hi Tami, I'm hesitant to write because I had such a horrible experience with Piqray. Everyone is different though so hopefully you'll do fine. But I thought I should add that I was on Piqray last summer and at day 12 had the rash, which as you said, was not troublesome. My oncologist had me go off the meds until the rash cleared, which took about 10 days. Then she said to go back on it. I took one pill and within 10 minutes had a monumental reaction: rash all over my body, diarrhea and vomiting. The rash was extremely painful -- stinging like hot grease everywhere. I called the emergency line and the oncologist called me back, prescribed a steroid, which my husband was able to get at a late night pharmacy. It was a miserable night and the next day the onc. had me go for blood work to make sure there wasn't any internal damage (to my kidneys?). She added another drug to block the pain and eventually, I'd say within a couple of days, I began to feel better. I wanted to keep trying since this is a targeted therapy but the doctor said absolutely not, that I was obviously highly sensitive to the drug. Apparently, after the initial rash, some people's systems adapt and some don't -- mine didn't. I wish you the very best! Let us know how you do. xoxo Ellen
Ellen thanks so much for your reply and I'm so sorry about your experience. I understand we are all different, but when some thing starts (like the rash), you just don't know if its you, if its normal or if its a bad reaction (like you had). I really appreciate you sharing. I wish you the best with your current treatments! Tami
Greetings: Sister/warrior I have heard about some great results from Piqray. I hope pray you will be given something to stop the rash, but I am happy you don't have any itching, or irritation.😇 Have a great day
Thanks for all the support. Here's my update - a week later. Even though I met the criteria to decrease or pause (>30% body surface area affected) I'm still taking the Piqray. Met with my Onc NP last Monday and she started me on topical steroid cream 2x/day and we added Benadryl at night (already was taking Zyrtec in the day prophylactically). She told me if the rash didn't get better by yesterday, we'd go to oral steroids. Well, the good news -- the rash is fading and lessening at day 17. So I'm sticking with the Piqray full dose for now, 300mg per day. I really want to give it a good shot. I'll keep you all posted. This site has really helped me over these years and I love the support here!
Its been a month now on Piqray (alpelisib) and fulvestrant. The rash abated at first with the topical steroid and benadryl, however after 10 days of treating that, and a fews days not treating, the rash came back (mostly in areas not previously affected ). Started oral steroid (prednisone) for 10 days so hope that will take care of it. Still not really very itchy, so that's a relief. On another side effect note, my fasting blood glucoses trended up and now I've started on metformin and daily finger sticks. The goal is to get them under 160 (highest 236). I was not previously diabetic, but this is another known and high incidence side effect of Piqray. The prednisone will complicate it for a bit but once I'm finished with that, then we'll see how the blood sugars do. It certainly is a journey! More bothersome side effects with the Piqray, than with Ibrance but certainly not unmanageable nor untolerable. Here's to science and targeted therapies!!
Dear tab78FN - somehow I came across your first post from 3 years ago. I have a similar story so wanted to say hi. Diagnosed with ILC Er+Pr+ Her- in 2006. Recurrence in bones in 2020, although now Er+, Pr-, Her-. I've been on Ibrance and Letrozole for a year and doing ok so far - I know this never lasts but I'm hoping for as long as possible of course. I hope your rash from the Piqray has settled down and you are doing well. I finished a PhD in 1987 and worked as a scientist until I retired in May this year. How is that going? Wishing you all the best-just wanted to say hello.
Wow, so glad to e-meet you. Always good to hear about folks w/ similar experiences, which is why I have really enjoyed and benefited from this support group. Well my Piqray experience has come to a close this past week. The rash resolved, then I was dealing with the hyperglycemia and that was going okay. However, all the side effects of the cumulative meds caught up with me (diarrhea from the Piqray, compounded by diarrhea from metformin), I was having so much diarrhea, then nausea and some vomiting, seriously decreased appetite and weight loss, I ended up in the hospital this past week because my electrolytes were so out of whack (and I felt like dog doo). After the 2 night stay, I'm feeling so much better. It will take a while for my body and my gut to recover from all of that. We stopped the Piqray, did some scans and will be discussing the next steps.
Yes, its a journey. I got 3 1/2 years out of Ibrance and letrozole so I felt blessed. Piqray was 6 months.
As far as school, I lost steam and momentum this past summer/fall, so am taking a leave of absence to allow me time to recover. I'm still working toward a 2022 finish. It will help keep me motivated. What was your area of science? Its always to good know successful women in the profession.
And most notably I want to feel well enough, physically and emotionally, to spend some more quality time with my husband. We like traveling in our RV, so coordinating care and treatment will be an interesting experience.
I wish you much luck and courage in this MBC journey.
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