Good evening all
I hope this posts find everyone doing as well as expected. I found out today that my oncologist is taking me off Ibrance and changing me to a new chemo pill called Piqray because my cancer markers have tripled in the past 3 months . I have done some reading about this drug and I am not sure if I like the side effects. Has anyone else tried this drug
One thing I would like to say is that I really appreciate the positivity of this site
I've heard and read quite a bit about Piqray because I have the PIK3CA mutation too. I'm not on it yet but it may be my next treatment choice. Would you take it with Fulvestrant? We're all so different in how we react to these drugs, but it seems that Piqray got good results in clinical trials with the main side effects being high blood sugar and rash. If you have had high blood sugar issues your doctor may recommend a low carb diet. Some doctors recommend taking a preventative antihistamine so patients don't get the rash. A few other women here have mentioned starting it in the past few months but I haven't heard any reports yet. So you are something of a pioneer! And markers that go up go down...mine shot up this spring on Ibrance and have been cut in half in the last two months on Xeloda. Stay hopeful, ask questions and please keep us posted.
Thank you so much for replying I have been in Fulvestrant for 3 months now and will continue it with the Piqray. I am scared and excited as well hoping that it will work I am a diabetic as well but my diabetes is under control so that is a concern. I will keep everyone posted
How are you doing on xeloda? I have to start this week. Scared.
Frances
I’m right where you are Francesca! I had a liver biopsy today. Plan is to start Xeloda soon. We can do this!
Oh I know that feeling...treatment changes are scary. We just get used to the roller coaster going along a straight stretch and then suddenly we're climbing again and worrying about what's around the bend. We all react so differently to each drug... I couldn't handle Ibrance at all and lots of women here have done well on it. But as for Xeloda, I've been on it for 3 months and so far so good. I'm on a relatively low dose of 1350 mg twice a day, and I take it 7 days on, 7 days off. The first time I got it they also sent a nausea med and two diarrhea meds...that scared me!...but I haven't needed either of them. I felt a little more fatigue the first few weeks but don't now. I'm diligent about putting Udderly Smooth Extra Care 20 cream morning and evening on my soles and palms and I think that has helped a lot. Other creams may be recommended too, just be sure it has the ingredient Urea. I still feel like my feet get really hot sometimes, and sore if I walk on an uneven surface or for more than an hour. Some doctors prescribe Xeloda for 14 days on, 7 days off.....I think I would have more hand/foot issues if I took it 14 days in a row. I also take 300 mg of Vitamin B6 to help prevent hand/foot, and COQ10 to help with energy. My CA 15-3 marker dropped 325 points since I started so I'm happy to put up with minor side effects! I hope it works well for you too!
I have been on Xeloda for 5 months, and so far doing good. But now my feet hurt so much, especially on the soles. They itch and so hard to walk and stand. No rashes, but just painful. Brought this up with my oncologist yesterday, but he really had no recommendations other than soft tennis shoes to wear all day.
I'm sorry you're dealing with such foot pain, what a bummer. They tell us to walk less but we're also supposed to stay active! After 12 weeks (6 weeks on Xeloda, 6 weeks off) I'm just starting to feel some foot pain...I think I irritated my soles by walking in river shoes on rocks yesterday with grandkids, now they feel very tender. I just ended my week on Xeloda so I'm hoping they will feel better before I start again, but it was a reminder to me of what might come. I soaked my feet in cold water last night and this morning...felt good while I was doing it! I take 1300mg twice a day which I think is already on the low side. What dose are you at, and do you take it for 7 or 14 days in a row? If you're dose is higher I wonder if it would help to lower it. But we hate to mess with success if it's working on the cancer.
I recently got a pair of slip-on Bzees shoes that are really soft and comfy with a smooth insole and good support. Here's a link to their website: bzees.com/c/science?icid=Sc...
And I'm going to start carrying a tube of Udderly Smooth in my purse and putting some on mid-day too. Does it help? Who knows...but it makes me feel like I'm doing something!
May your good results continue and your feet feel better.
Hi
I am going to have the liquid biopsy done to see if I have the mutation. If I do then probably piqray. I start xeloda this week. Am scared and anxious about it. Know the feeling.♥️♥️
Francesca hope you do well on Xeloda! Sounds like people are getting good results from it!
I pray you are among them!
Thanks Marianne♥️
Hi!! My mom has been taking piqray for approximately 6 weeks now along with fulvestrant.... she started this combination after 23 months on Ibrance and letrozole.... she has not had any rash mouth sores...she is really tired at time and not so much at other times ... nauseous occasionally and stomachs can be loose at times....... she has def cut back on carbs and sugar intake and lost some weight as a result of this...... overall she is doing really well thus far..... she does a daily mouth rinse and takes Zyrtec daily for preventative measures.
Kim
Thank you
Thanks ....very helpful to get early news about Piqray, and I'm so glad your mom is doing well so far!
Hi , thanks for sharing what your mother is going through. I too am on Piqray.
I have the mutation.
I got two tests done.
One was a biopsy of my tumor which came out positive for the mutation and the blood biopsy , which came out negative.
It is important I think to get the biopsy , as if we had only done the blood test then I wouldn't be on the Piqray. I have been on 300mg of the Piqray for 2 months now and am doing well.
I was getting some stomach issues, but now I take the medicine with food at lunch so that I don't get the acid reflux at night.
I got a few mouth sores but use organic coconut oil with essential peppermint oil mixed together . Just a few drops of essential peppermint oil mixed with a teaspoon of the coconut oil and swish it in my mouth , it helps.
I also take a zyrtec pill (actually it is one made from Walgreens that is less money) same ingredients as Zyrtec. I take one pill an hour before I take the Piqray . Both with food.
I haven't had any rash . My friend who was on Piqray told me to do this and I did it from the beginning as I wanted to make sure I didn't get the rash.
My tumor markers have been going down.
My glucose has been going up , so I will be cutting down the carbs .
I wish you all well and hope this helps others on Piqray .
Faun💗
I just took a blood biopsy and found out I have the mutation. The type of blood draw is by Guardant360. My onc had the kit in his office, so I was able to have it done there. My markers are done every 12 weeks and have doubled each time for the last year, although my CT scans are primarily stable with some small new lesions. All to the bone. Anyway, I've known for quite awhile that I have needed to change my regiment Ribociclib and Letrozole), but due to the expense haven't made the move. The FDC recently approved Piquay (also called Alpelisib) in the USA. There is a local clinical trial using this and Faslodex (fulvestrant) and I have asked my onc to give me a referral. I too have heard it works better on a low carb diet, so I will be very much missing the carbs I crave so much. Thank you ladies for all your input on this new drug and please continue to keep posting your knowledge and findings about same.
Thank you for replying I meet with my oncologist tomorrow to go over the new treatment Like you my Mets disease is still just in my bones and my markers have tripled in the last 3 months I am a little apprehensive but I have to put my Faith in God and my oncologist to see if this works I will post tomorrow after my appt to what I find out
STAY STRONG MY FRIENDS
Lilian, can you ask your onc tomorrow if Piquay is a chemo drug. My onc acts like it isn't, not like Xeloda anyway. He just acts like it's purpose is to fight off (kill) the mutant protein which feeds off estrogen makes cancer cells. Let me (us) know your onc's reply. Thanks.
Hi Lilian - I have to admit that I scanned (vs. fully read) the previous responses, so forgive any repeat. It's not clear to me why you changed treatments...Did your onc mention anything beyond the tumor marker increase? I think that most oncs don't make a change based on tumor markers, which can increase for various reason unrelated to actual progression. I just want to confirm that you've had a scan that shows progression....There are a limited number of treatments between here and there...I believe that it's best to drag our feet as long as practical between each of them...Be well, Lynn
My doctor wanted to use it as an option but i don't the PIK3CA mutation so we never got down the side effects road. I have good things about it but just can't comment on side effects.
Best to you,
Kim
Hi is Piqray available in the uk please x
Hi Elizz,
My oncologist said that piqray will be more widely available in the UK in 2021, either March or May, I believe.
Sophie
My oncologist told me Tuesday that she wants to move me from Ibrance to Piqray. I have been tolerating Ibrance quite well but do not like what I read about the side effects of Piqray. I have lesions on my liver that are getting larger, the largest 4 cm. I would like to hear from others who have switched from Ibrance to Piqray and how well they tolerated the change. Also interested to know if anyone has had cancerous lesions removed from their liver using Proton therapy.
Hi , I have been on Piqray for 2 months now and have been doing well . I have described my journey a few posts down if you want to read about it. As a reply. I take the Zyrtec pill one hour before the Piqray medicine . Both with food and that helps.
I wish you well on Piqray . My friend has also done well on Piqray.
Sending love to all on this journey 💗
Hi , I have been on Piqray and Fuvestrant for 2 months,I had the piqray mutation , they tested my tumor tissue and it tested positive for the Piqray mutation.
They also have a blood test to test for the mutation as well, which came back Negative , so I was glad they also tested the tissue! I have been doing well on these two , I take the Zyrtec pill one hour before I take the Piqray , to help prevent any rashes. I take the Piqray with food and yogurt as that helps me to not get indigestion .
The piqray makes me a little tired and I sometimes have to take a short nap, but the best part of this is that my tumors are shrinking! I hope this helps anyone who is on these two , piqray and fulvestrant .
Sending healing prayers to all , Faun
Hi Lillian , I have been on Piqray for the past 3 months now and my tumors have been shrinking slowely , my Cancer markers are all normal range and I also take fulvestrant and take a Zyrtec pill to keep the rash from getting bad. I will get a PET Scan in Aug so will update more then .
So far I am doing great on Piqray and hope everyone who has this mutation does well also.
If you haven't done the Piqray Mutation test yet , ask your doctor to do this test . This is the best chemo drug I have been on so far (the other drugs were Pacletaxel and Ibrance, neither were very helpful and didn't work after a short period of time , or I couldn't handle the side effects , or both ).
I wish everyone here the very best no matter where they are on this journey of healing.
Make sure to keep up with exercise, good laughs woth friends and good , healthy Organic good and supplements 💗
Sending love to all , Faun
Piqray/Alpelisib (plus Fulvestrant injections) Trial so far
Piqray and Truqap
Chemo Update
Piqray or Xeloda? What were your experience?
