Take our poll: Caregivers, what do you find most difficult about caregiving?
Weigh in: What are the best and worst gifts for people with breast cancer?

Alpelisib

1…45679

Comments

  • nkb
    nkb Member Posts: 1,561

    Jobur- my PET was scheduled today but the machine was broken so not sure when I will do it. I don’t know when the oral faslodex will be approved- but, supposedly you can get more drug into you than with the shots. How long did the AA work for you ~like 7 months or so

  • jobur
    jobur Member Posts: 494

    Nkb What a drag to have the scanner break down just now. Hope you are able to reschedule soon. Fingers crossed.

    Wouldn't that be great to have Faslodex without the shots!? Especially if it is more effective in pill form. I've been on exemestane for 7 months and Afinitor for 6. Sadly, I can't say it ever "worked" for me. Both 3 and 6 month scans showed some progression, but nothing too terrible, so I can't complain.

  • Dlove72
    Dlove72 Member Posts: 47

    did anyone experience a really bad rash with Alpelisib? I was on day 12 and broke out in rashes all over my body and had to go to hospital for a few days.

  • Sary
    Sary Member Posts: 43

    Yes - I did. It was around day 10. It was accompanied by fever for me and a terrible "skin crawling" feeling. At least one other person on this thread had the same experience. We both tried to re-start, but ultimately had to stop alpelsib. I'm convinced that many more people than they admit have this reaction (based on our small sample size here!). I hope you are feeling better.

  • jobur
    jobur Member Posts: 494

    Dlove72 & Sary - Very sorry to hear you both had to quit Alpelisib due to bad rashes, but I appreciate the info. Did either of your mo's suggest taking Claritin or anything else to prevent the rash? I think SusaninSF's mo suggested this and she did not get this se.

  • GG27
    GG27 Member Posts: 1,308

    I had the terrible rash, like thousands of fireants biting me. I was on the trial & not allowed to take Clairitin. I only lasted 10 days on Alpelisib because of the restrictions of the trial. I believe there are not many restrictions now.

  • Dlove72
    Dlove72 Member Posts: 47

    I’m just leaving hospital today! I was there since Saturday night but feeling much better. I wonder if the doctor will lower the dose or what happens next. Any other side effects anyone experienced? My doctor just mentioned the rash and blood sugar are the two that happens the most

  • susaninsf
    susaninsf Member Posts: 1,099

    In the trial I was on, they wanted me to take Claritin but I know that does nothing for me so I took Allegra prophylactically for two weeks before I went on the trial, one 24-hour pill in the morning, one in the evening. I continued well after I got off the trial but ended up getting a rash after I got off of the trial. No rash while I was on the trial. Went to see a dermato oncology specialist who recommended that I take Zyrtec instead and use Triamcinolone cream. She said that she has found that Zyrtec works the best for cancer-related skin rashes. The rash went away almost immediately. So my recommendation would be to take a double dosage of Zyrtec prophylactically for two weeks and continue after the treatment is over.

    For the blood sugar, I went on a Keto diet. Not a super strict Keto diet. I allowed myself 13g of net carbs a day and didn't always get that low. I think that any lowering of carbs and sugar helps, you don't have to actually go into ketosis. I tested my urine every morning and I was only in ketosis about 10% of the time. That brought my blood sugar levels down. Went back on a normal diet after treatment and my blood sugar levels dropped down to a level lower than before I got on the trial. Surprisingly the Keto diet also lowered my cholesterol even though I ate a lot more meat and fat than I normally do. Lost about 8 lbs.

    I jokingly called Alpelisib the "beauty" treatment. I lost weight and my skin looked great. I think it caused some kind of inflammation that wiped out all the fine lines on my face. One day I woke up and it looked like I had had lip injections which was kind of scary. But that went away after a few hours. My girlfriends all wanted to learn my skincare regimen. I told them that it was the Alpelisib.

    Unfortunately for me, I experienced progression and had to get off after 8 months. My first scan was great with dramatic tumor shrinkage but the next two scans showed small progressions.

    Hoping for the best for all of you trying out Alpelisib!

    Hugs, Susan

  • cure-ious
    cure-ious Member Posts: 2,897

    Susan, How are you doing now? Are you planning to stay on Taxol a long time, or transition to some targeted drugs?

  • susaninsf
    susaninsf Member Posts: 1,099

    I am doing well on Abraxane (Paclitaxel) so hope to be able to stay on it awhile. Had a lung biopsy last week hoping to get an updated somatic profile but the biopsy said "No malignancy found". I guess that's good news but was hoping to get more info.

    Last two blood draws (last Friday and yesterday) showed a sudden increase in my creatinine level. I'm thinking it's my kidney stones wreaking havoc but not cancer related. Could also be asymptomatic UTI so hoping to do a urine analysis. Will have a renal US on Thursday.

    How are you doing?

    Hugs, Susan

  • cure-ious
    cure-ious Member Posts: 2,897

    Susan, that all sounds really good!! A chance to relax in the summer and later on take a look at what is in clinical trials and prepare for whatever comes next! I have no idea how I am doing actually, because I've been laying low- I had scans done right before I went to europe, which is now a bit more than a month ago, and haven't had the guts to call for the results. They do not post to portal either - at first I would tell myself each day that it was not actually a good time (jet lag, backlog at work, visitors, etc), and at this point it has gone on for so long I'm hoping that if I just ignore it altogether, maybe it'll just go away?!

  • nkb
    nkb Member Posts: 1,561

    Cure-ious- I totally understand that sentiment- I do it with the TMs. I always thought they would chase me down if something was really wrong!

    Will you be seeing your MO soon?

  • cure-ious
    cure-ious Member Posts: 2,897

    Well, speak of the devil- I just checked the website again, and the nurse posted my scans yesterday- PET and nuclear bone, both negative!! Whoo-Hoo!!! I'm just skating past my four year mark, keeping my head down... But yeah, since I had no urgent messages to call the MO, I thought it was probably OK, but still its nice to know for sure... Grade 3, mets head to toe and PR-negative, when I started I had no confidence that the cancer would even be endocrine-sensitive, let alone make it out this far. I had minor progression last December, and they radiated two spots, which clearly at this point it was well worth doing. So I do think its a good idea to get regular scans, even if you have no symptoms

  • skyfly
    skyfly Member Posts: 66

    Hooray Cure-ious! So happy to hear this :

  • Chemokaze
    Chemokaze Member Posts: 177

    Yay Cure-ious....HIGH FIVES!!!!!

  • nkb
    nkb Member Posts: 1,561

    cure-ious- fabulous news!

  • jobur
    jobur Member Posts: 494

    SusaninSF - Very happy to hear you are doing well on Abraxane. Hope the lung biopsy was not painful and sorry it was not more beneficial. Classic good news/bad news, no malignancy/no info. Hope the creatinine increase is just a blip and US Thursday shows lots of nothing. I can't thank you enough for posting the info about Zyrtec and keto diet. I learn so much here thanks to people like you taking the time to post.

    Cure-ious - I'm surprised at you! Not living up to your screen name when it comes to scan results, ha ha. So happy to hear all scans were negative!! Please remind me what tx you are currently on. Keep your head down and skate on, it seems to be working for you.

    Best wishes to all

  • susaninsf
    susaninsf Member Posts: 1,099

    I can't believe your MO didn't call you immediately with the good news! So wonderful!!!

    Hugs, Susan

  • cure-ious
    cure-ious Member Posts: 2,897

    Thanks, you guys!!! I guess I will stick with the Ibrance-Femara, but maybe it would be a good idea to change the Ibrance with Abemaciclib?

  • chico
    chico Member Posts: 197

    Thrilled for you Cure-ious. You are a lovely human being and so generous at sharing your knowledge for which I am sure that most people on this forum are extremely grateful. I have just started cycle 37 and alsohope to keep going for a long time on these great meds❤️

  • cure-ious
    cure-ious Member Posts: 2,897

    Chico!! Great to hear from you! Keep on keeping on.. "fist bump"

  • nkb
    nkb Member Posts: 1,561

    cure-ious- Interesting conundrum re sticking with a winning combo or jumping to another CDK to try to prevent resistance. Don’t think we have the data to know which way to go, but, interested in what you decide.

  • 42young
    42young Member Posts: 126

    Hi all, i'm new here & have Pik3ca mutation from my breast tumor.

    I 'm currently on Ibrance & anastrozole, but wonder if carrying this mutation will shorten my time with Ibrance?

    How did you find out that you have this mutation? From orginal breast tumor or from distant mets tumors?

    I'm de novo bone mets with strong er/pr positive, her2 negative, but so worry since found out about this mutation.

    Your comments are much appreciated!!

  • GG27
    GG27 Member Posts: 1,308

    42Young,

    I have the mutation found either in the original tumour or later bone biopsy I never did ask but I didn't have to have further testing. Was on Anastrozole for about 15 months maybe? before I went on the Ibrance/Femera trial. At that point I hadn't had progression but my MO decided she would like me on the trial. I was 30 cycles before a tiny bit of progression & I went on the Alpelisib/Faslodex trial. I couldn't handle the alpelisib but was allowed to stay on Faslo for 8 months before a tiny bit more progression to one liver met. Normally I would have continued on these drugs for a while longer but the trials have very strict parameters to percentage of progression so I'm now on Xeloda Light.

    So all this to give you some idea of how I've done having the mutation. You have no idea how you will do on any of these drugs. I had a terrible time with alpelsib but others are doing great on it. I did great on Ibrance, others have a terrible time.

    My MO & I like to wring as much time as possible on any given treatment before changing.

    good luck! cheers, dee

  • 42young
    42young Member Posts: 126

    GG27, thanks for sharing. I'm a bit relieved to know that you have this mutation & 5 years out from stage iv. I hope you will do great on Xeloda & can revisit endorine therapy down the road.

  • newgardener
    newgardener Member Posts: 103

    Hi 42young

    I also have the pik3ca mutation - it was found in a biopsy of my plural tumour in year 8. I was been in treatment for MBC so long that Ibrance wasn't even available to me as a first line...but you can hopefully tell from my list below that I nonetheless had a good response (2 years) to palbociclib in my fifth line. I am now on my seventh treatment (and coming up to year 10) - a pik3ca inhibitor and fulvestrant in a trial. Having the mutation has meant that we have another possible drug in the arsenal/toolbox (pick the analogy).

    I hope you have a nice long response to your first line...but having the mutation means you have another reasonably tolerable drug to consider next.

    SusanSF and Cureious - thank you for the updates. I hope things do keep carrying on as well possible for you.


  • theresa45
    theresa45 Member Posts: 238

    Cure-ious - Congrats on the awesome scans! You're always so generous with sharing your expertise, and it sure looks like you'll be helping others for a long time to come! Very happy for you!

    SusanSF - I'm glad that you are tolerating Abraxane well. Thanks for all the information on managing side effects of apelisib!! I hope that Abraxane will be very effective AND tolerable for you!

    42young - My PIK3CA mutation was found by Foundation1 tumor analysis when I was first diagnosed Stage IV. Still, I had a great response (everything shrunk) to letrozole plus oopherectomy for 18 months. Hormone therapy can work in the presence of a PIK3CA mutation. I read that about 40% of MBC have a PIK3CA mutation.

    Grannax and Gumdoctor - I'm praying for good results for you both on your next chemo!!!

    I broke my ankle, so have been a little busy sorting out this latest "normal people problem." i was just getting back to hiking/biking after hand/foot syndrome with Xeloda and then liver surgery. Ugh! At least normal problems get better with time...

    Best to everyone,

    Theresa

  • 42young
    42young Member Posts: 126

    New Gardener & Theresa, thank you for sharing & giving me hope. You comments really made my day!! Thanks again

  • cure-ious
    cure-ious Member Posts: 2,897

    For anyone taking Alpelisib (Piqray), I thought it was remarkable in this interview a physician says he has a patient who has been on the drug for seven years!!

    https://www.onclive.com/publications/Oncology-live...

    that's an Ibrance-kind of response there, good to know it is possible..

  • newgardener
    newgardener Member Posts: 103

    Hi everyone,

    Well all good things do seem to come to an end...after 21 cycles on GDC-0077 (a pik3ca inhibitor) and fulvestrant, it seems some liver lesions have established and the pleural mets aren't really stable anymore.

    So I'm looking at some trial options and I've been super lucky that a liver biopsy is already scheduled.

    It's good that there seem to be a number of trial options. A CDK7 inhibitor one might be open in Toronto. It's first in humans/dose escalation, so that is scary.

    My oncologist isn't really keen on the idea of repeating a CD4/6 inhibitor.

    Conventional choice would be IV taxol. I didn't like it much back in 2004/2005. I've been working pretty hard to avoid IV chemo as a mets patients.

    Heather


Categories

Join Us on Zoom: Upcoming virtual meetups. Read more...
Give your account some personality! Add a profile photo.