So I guess I have reached the end of my journey with Xeloda. I was on it for 9 months and things remained fairly stable but my last MRI showed some growth. Still less than what I started out with but my doctor feels like its time to change. And for all of you who I told that Xeloda side effects were not to bad, I still stand by that for the most part, but the last few weeks my feet feel like I am walking on gravel and my hands are calloused and so sensitive. I can't even unscrew a lid with ridges because it hurts. So anyway there is this new drug called Piqray - it was just FDA approved a few months ago. It is for women with HR+, Her 2- cancer with an abnormal PIK3CA gene which is about 40% of us. We are hoping that the lab that did my original biopsy on the liver still has enough tissue to determine this so I don't have to have another biopsy. So we wait. And I am taking a break from the Xeloda until we figure out if I am a candidate for this drug. You take it with Faslodex which I was on for 11 years before the damn cancer showed up again. Just curious if anyone had heard of it.
I know we end up having to change treatments some times but do you ever feel like you are just over it. I am sick of being a patient. Tired of appts, bloodwork, scans and everything else that goes along with it. Okay that's my rant for the day - onward and upward.
Kim
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Kimr2081
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I feel you. Yes—three years in and I am tired of it all. Had to see an allergist- have hives- he thinks it’s the faslodex. Gave me steroids if I have to keep getting it. My onc wants pet scan first.july 5th I will do that. Tomorrow have to see ENT because my hearing is muffled. I have been ranting and raving about all this for a week. Now I have some energy to take care of all this. Back on ibrance for now. It feels so ridiculous to have so many ups n downs n all around with this damn mbc. I am not looking forward to more changes.
Piqray is the new common name for Alpelisib which was just approved by the FDA at the end of May. It sounds promising, main side effect seems to be higher blood sugar levels. I didn't do well on Faslodex so I'm not taking Piqray now, but hoping it will be approved in combo with Letrozole in the near future. Fabulous that you did so well on Faslodex! Please let us know if you find out more about Piqray. And thanks for the update on Xeloda...I'm only on my second week, it's a good reminder to stay vigilant about the hand/foot thing throughout treatment.
Thanks for the info. I hope that would be the only side effect as I think that would be easier to manage. I hope you do well on Xeloda. It has kept me stable but after 9 months my hands and feet are making me pretty miserable. Stay on the moisturizing for sure!! I would coat my feet in aquaphor and then put socks on to go to bed which I hate but got used to it. I will let you know what I learn about it.
I found out just last week that I did not have the mutation so its not an option for me. I hope it works for you and the side effects are manageable. Keep us posted.
I am so with you. Sometimes I just dream about going rouge and going off of everything. I'm on Ibrance 75 Zometa Fluvestrant and I shouldn't complain but my original BC was 2006 and 2009 I became metastatic bc to the spine three different places , collar bone , iliac crest bone both left and right and now C 4 so small I'm not sure what I'm going to do. The only thing that keeps me going is my faith in God and my adult children and the possible grandchildren they might have....... I guess we all have that dream....Chrissy B
I feel you Chrissy-have had those same thoughts lately. Starting xeloda this week and feel ugh about it. I had hoped ibrance/ faslodex would work long time for me- had bad allergic reaction to ibrance that was escalating . I have kids and grandkids and I feel guilty when I think of going rogue. I guess we all have that thought now n then. For now I won’t act on it. I have Mets to thoracic, lumbar, iliac,ribs and two lung modules. Still here, still fighting.
Keep on going, sister warrior.♥️We can get through this together🙏🏻♥️
Your wishes are so endearing, how did you know I would spoil them !!!! ha ha Thanks for listening and understanding . This is cathartic my first time expressing
myself . I will keep trucking on Sista!
Chrissy
This is an old convo, but kept popping up in my feed, plus I know that members search on topics, sooooo I'll add some comments here.
I have that PI3K mutation, so was happy to hear about the approval. I looked into the studies, and Piquray/Alpelisib (???) apparently triples progression-free survival as a second line treatment. When I need to make a change (hopefully not very soon!), I'll be taking it as a 3rd-line, but still optimistic about it. My docs seem hopeful, too. I'd love to hear about anyone's experience with it. Other's have noted increase blood sugar levels as a side-effect....If memory serves (it rarely does, these days...), about 2/3s of patients experience this side effect. I tend toward low blood sugar, so am hopeful that I'll be okay with it, when the time comes...
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