Xeloda and Afinitor in lieu of Piqray

[Saltandlight]

Hi everybody-had a horrible go with Piqray and the oncologist has taken me off but given me no alternative or solution. In seeking out a second opinion I’ve been told to inquire about Xeloda and Afinitor. Just curious if anyone has experience with these as they don’t specifically target the PIK3CA gene mutation. Thanks!

[Nocillo]

I don’t understand how they don’t have a solution, or do they need time to study the best approach?

[Saltandlight in reply to Nocillo]

I wish I knew. I was at my treatment center for Fulvestrant just two days and was told no one had time to talk to me and I could wait until my next scheduled appointment.

[Nocillo in reply to Saltandlight]

Good grief! Not a good reply by them!

[13plus in reply to Saltandlight]

Wow, that is not a way to respond to your needs!

[Figletf in reply to Saltandlight]

Ridiculous 😜

[1711JPD]

I am sorry you are going through this. They arent offering alternatives?

For me, when Ibrance and Faslodex stopped working, I was switched to Afinitor and Exemestane. Was only on that combo for a few months when I developed a horrible, head to toe itchy rash. Afinitor was stopped and I started Xeloda with the Exemestane. It is working well, with my June 1 PET scan and CT scan of abdomen (I have had liver mets only which have been treated by liver ablation) showing no evidence of active disease. I am experiencing fatigue, but not too bad.

I hope you find an alternative medication which works well for you!

Best wishes to all.

[Gingerann1 in reply to 1711JPD]

Hi! How long were you on Ibrance and Faslodex before they stopped working? Was that combo your 1st line treatment?

[Saltandlight in reply to Gingerann1]

I was on ibrance and Letrozole for 5.5 years and that was my first line treatment.

[13plus in reply to Saltandlight]

That was a great run on the iBrance! I hope you can get some answers soon

[1711JPD in reply to Gingerann1]

I was on Ibrance and Faslodex for 2.5 years. It was my first line treatment.

[Gingerann1 in reply to 1711JPD]

Thanks. It is my first line as well and I have been on almost 3 years so hoping to get many more months before progression.

[1711JPD in reply to Gingerann1]

I hope you do too!!

[mariootsi]

What sort of side effects did you get with Piqray? Everyone says it's so difficult.

[Saltandlight in reply to mariootsi]

Extreme hyperglycemia, horrible diarrhea to where I couldn’t leave the house, nausea, vomiting, stomach pain, rash, immediate hair loss, and eye problems. This is a horrible drug.

[LDR1 in reply to Saltandlight]

Sorry to hear you had such an unpleasant experience with Piqray! It really varies by person though. I’ve been on it for 4 weeks and so far have zero side effects (fingers crossed…).

[Widdershins3 in reply to mariootsi]

My blood sugar shot up to nearly 700 and I felt *awful* on Piqray. You couldn't pay me enough to ever take it again. Horrid drug. And as far as side effects go, Xeloda is right up there too. Just messaged my doctor to get me off it or to radically change the dosage. Once you're taken off a dream of a chemo drug like Enhertu, the choices left seem to really suck. I wish you luck.

[mariootsi in reply to Widdershins3]

Omg

[ClarenceO in reply to mariootsi]

I've been on Piqray and Fulvestrant shots for 4 months after running out the effectiveness of Verzenio and then Ibrance within 2 1/2 years. Piqray for me has been very effective in lowering tumor markers (2500 down to 250) w. only a few side effects that were tolerable. My glucose stayed within range without Metformin but it did cause diarrhea and, after 3 months, a few mouth sores. As LDR1 says, it is variable by person.

I have recently developed extreme hip, leg and lower back pain which is, to date, unexplained or attributed to arthritis but is causing greater immobility. We stopped Piqray for 2 weeks but to no effect. Very scary rapid progression. Palliative doc just prescribed a Butrans patch followed by Cymbalta for alleviating generalized pain which prevents me from walking, gardening, traveling, etc.. I went to PT I found on my own which helps. MBC presents puzzles to be figured out w. each new drug.

[Eliactida1955]

I am on xeloda and coming up tumor markers soon. Affinitor was awful didn’t work for me. I had awful side effects. Xeloda I hope it’s working bec it’s been very easy to take. I wish you the best🙏✝️

[Saltandlight in reply to Eliactida1955]

And you as well 🙏🏻🙏🏻.

[elle3054 in reply to Saltandlight]

I was on Piqray and it was like you said Im on enhertu now I think you need another opinion there are so many drugs out there dont let them waste your time

[Bettybuckets]

I had 2 years on the CDK4 inhibitors… but looking back I was fatigued and didn’t feel well at all… I was sad to leave them and fearful of change when I found out lobular cancer had spread from bones into liver but was glad to switch just to try to feel better… at Xmas I . switched to xeloda (8 months ago) and although I have to deal with the feet feeling blistery from HFS, I do feel much better and most times now don’t think about being sick all the time… which I did when I had symptoms like fatigue bloating and some pain … I take a celebrex once daily and occasionally just one Tylenol as needed. The thing I notice most is that I now don’t have to rest every afternoon to revive and make dinner etc.. now I just go go go all day and that has been a blessing in summer. I was happy that xeloda is PO- meaning taken by mouth… but at first wasn’t happy that the efficacy data isn’t very long… meaning pts usually didn’t stay on it for even a full year before having to move on.. but with a skillful Dr who can help you manage the side effects by lowering the dose when needed or giving a longer drug holiday than the usual one week off each cycle, it seems possible to get longer out of this treatment if you are responding. My lovely 2nd opinion Dr over at Dana Farber told me that she treated her mother in law with Xeloda and she stayed on it for 8 years! That gave me alot of hope.

Good luck with which ever drug you decide upon… it seems like we may get all the various drugs eventually… and taking the easier ones up front seems to be a smart way to do things rather than making life too hard right away.

Hope that was helpful!

Trying to swim every day!

[Saltandlight in reply to Bettybuckets]

Thank you so much!! Keep swimming!!

[Timtam56 in reply to Bettybuckets]

What is HFS? I get so confused with all these different mnames of things.

[Bettybuckets in reply to Timtam56]

Hi Tim tam! My fav cookie? How are things in Australia? HFS is hand foot syndrome which is pretty common side effect when you are on xeloda which is a pain but it actually is easier for me than being on Ibrance or Verzenio… those made me feel so tired that I had to lie down most afternoons but now I go go go… with my cycle snd swimming and doing fun things that don’t require much walking. But my terrible bloating firm liver Mets has mostly gone and I feel normal… my pain from bone Mets also is very manageable with just celebrex and Tylenol so for that I am grateful

[Timtam56 in reply to Bettybuckets]

Ahhhhhh. Thank you. Ha ha. I find tint sms too sweet. And that’s saying something for the sweet tooth I am!

Yes…. I know of Hand and Foot syndrome. (And very scared if I go on Xeloda, I will get it!😳) I’m just not great with acronyms. 😬. I feel really dumb now! Sorry.

[Fiercefighter13]

Hi Saltandlight! I have been on Ibrance/Letrozole, when that stopped working Verzenio/Fulvestrant - this combo didn't work at all but we gave it a try, Fulvestrant/Anastrazole - that didn't work either. From there went to Piqray. That whole experience was awful to say the least. By day 7 on it, I started getting polka dots, which I thought "ok, it can cause rashes, no worries" by day 9 I was covered in an intense purple rash all over my body, blistered, in my eyes, in my mouth, under my nails, everywhere and a fever of 105.4. My doctor pulled me off of it immediately and put my Methylprednisolone for 20 days......the kicker is it knocked my markers down from the mid 500's to low 200's in those 9 days....but my doctor said it was a no go for me. Plus, I felt so sick with that fever it caused and the rash was frightening. From there I went to Xeloda. It has some side effects, yes, but works like a charm. My markers have gone from 589 to 38 since January and are still going down. I had active metz in my stomach and colon (progression from bones found last August), and just had an FES PET, and now I'm back to NED. I'm lobular ER/PR+ and have the P13K mutation. Xeloda can have some side effects, hand/foot, fatigue, can cause nausea and diarrhea, but I only got the fatigue and hand/foot now managed by a lower dose (still working good though). One thing is for sure, you have cancer, stage 4 cancer, and you always deserve an explanation and alternatives and solutions....on the spot! There are many meds left in the arsenal. They will be approving Capivasertib soon according to my doctor (P13K inhibitor with much less side effects and easier to tolerate the Piqray according to my doctor). If you don't get the answers you need right away, second opinions and other doctors are always available. Hope this helps, take care!

[Saltandlight in reply to Fiercefighter13]

Thank you -this gives me hope!

[Timtam56 in reply to Saltandlight]

I have heard that the PIK3?? Drug CAN (a side effect) cause Diabetes. Anyone hear heard that or had that happen?

[Fiercefighter13 in reply to Timtam56]

Hyperglycemia (diabetes) is a common side effect to Piqray according to my doctor. The new medication Capivasertib apparently has that as a common side effect as well. However, my doctor did tell me that it is quite manageable with diet and/or Metformin most of the time. For some people though it is not manageable so it's definitely something to keep a close eye on when on these class of meds.

[13plus in reply to Fiercefighter13]

Your response to Piqray sounds intense and scary! I’m so glad the Xeloda is now working well for you instead

[Fiercefighter13 in reply to 13plus]

Thank you!! It is a huge relief to have something work really well. None of the other meds were home runs for me which has been disappointing. I hope it lasts!!

[RLN-overcomer]

Greetings: Salt&Light: Sister/Warrior/Over-comer. I do hope pray the next line of treatment gives you many many more years cancer free. 🙏😇

[Timtam56]

Firstly….. I would seek another opinion if that’s at all possible for you. I’m so upset to hear you tell us there’s not other alternatives or solutions. Where are you that a doctor or hospital would treat you like this? You poor darling!

Secondly. I am in the throws of having my bloods tested for the PIK3CA Gene, and it has been suggested I’ll go on the trial or on Xeloda. so I’m going to be following you closely.

I hope you find some answers soon!

PS. I”m in Melbourne at Peter MacCallum Cancer hospital for my treatment. My oncologist sounds like an angel compared to yours. I really hate it when doctors don’t give their patients the best possible treatment and care!