Alpelisib and fulvestrant

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Hi, i am a newby here today. I am starting Alpelisib and fulvestrant injections tomorrow and would like to hear of different peoples side effects to this drug

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Hi @wino1, welcome to the forum.

I found this chat from 2023 which may be relevant: Piqray/Alpelisub and Fulvestrant treatment

We have info pages on alpelisib and fulvestrant too on our website, which I hope are useful.

If you’d like to chat to anyone on our breast care team about anything that’s on your mind, our team is here on freephone 0808 800 6000 (Mon-Fri 9am-4pm; Sat 9am-1pm).

Sending our warmest wishes
Bernard

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@Bernard the link to the original post I signposted to doesn’t work .

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Hi Jill, do you think the link should go to this thread? PIQRAY + FULVESTRANT - New treatment

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Yes that was it , there were very few threads at the time there are a couple more now .
@wino1 welcome to the forum.

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Thanks for pointing out the error in the link. I edited your comment now to make the link point to the right thread.

1 Like
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Hi wino1
I have been on this regime since jan23. So just over a year now. So far all my 3 monthly ct scans have been stable, next one tomorrow
My side effects have been mild up to now. Although I developed diabetes in the first week due to this drug so I now have daily insulin.
I have now had confirmation since having a wisdom tooth out last week that I have got osteonarcosis so waiting to see what they will offer me.
I do take longer to heal as well.
On the whole I have been well and I’ve continued normal daily life. My friend is on the same treatment and experiencing the same things she is generally well. I don’t know anyone else. Apparently we are the only 2 on this treatment in our area.
Hope this helps a bit
Bumblevan

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Hi bumblevan1, this drug really working for you i am pleased to hear that. I first went on 300mg and my sugers went to 24 so they took me off it for a while and put on diabetic treatment. Second try was on a lower dose 250mg and within 4 hours started to feel unwell and next morning covererd from head to toe in the rash although i have been on antihistomenes for a week prior to starting original dose. I am now on steroids so in the next 2 weeks will see what my oncologist has to say hopefully 1 more shot at 200mg who knows

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Sorry I hadn’t replied earlier but had trouble logging on so had to change my password.
You sound like it’s having an effect on you. When I first started on Alpelisip 300mg my sugar levels did spike straight away so that’s when I started on insulin. Sugar levels steadily increased so my diabetic nurse told me to increase the insulin by a couple of units and keep doing it till it all stabilises which I have been doing. Of course having infections in the tooth didn’t help with the insulin. Can’t win sometimes.n Had to stop meds for 2 weeks because of having this wisdom tooth out but back on it now and noticed a difference in my sugar levels practically straight away. Bit of a juggling act but I’ve got used to it now and try not to get in the way of my daily life.
Still waiting for my ct results hate the wait but must be patient I suppose.
How are your steroids going?
How long have you been on this journey?
Mine has been since 1996 this time it started for the 3rd time in 2020 right at the start of Covid . I just made it with 1 day to spare to have an emergency total hip op where they first found this present cancer, which had come from the mastectomy site. Well we keep plugging along don’t we.
Hope you get sorted soon. Bumblevan1

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Hi, i didn’t know i could alter my insulin i will ask about that when i next go in. Had a chat with my oncologist yesterday and he has said i can go on 200mg with steroids for a few days before to help ease it in. I know my sugers are going to be a problem but lets see.I am having trouble with my jaw i can’t open my mouth very well so am seeing a maxillfacial team in 2 weeks and i am hoping they dont have to stop this treatment to sort it out. Your right something always seem,s to get in the way. My first cancer was 2004 breast cancer and came back as secondary on the day we went into lockdown in March what are the odds of us both being in that situation, and the day before when all dentists closed down i managed to get a wisdom tooth taken out or they would not have started my treatment it was a very stressfull time as we well know. I will like you keep plugging along and i hope you keep well Wino