Thankyou Julie for replying. I managed to get hold of a diabetic nurse this afternoon and will increase the dose of insulin tomorrow as my levels had gone up again today, so hopefully it can be controlled with increases of insulin. It does seem to be high risk of happening with this drug. I don't want to have the Alpelisip stopped again just yet, just want to give it a try as 3 other treatments have stopped working. Hope your getting on with Capecitabine, thats one I tried but it only lasted 2 days as i unfortunately had heart spasms and had to get it stopped, apparently a very rare occurrence!
Good luck with your treatment
I had 3 cycles of apelisib but my consultant has taken me off it because of the side effects. I wasn't able to eat and lost 2 stone in weight and I could barely get off the sofa. Since stopping my blood glucose is back to normal.
I am now on capecitabine and feel much better.
I was the only one in my area that was on apelisib. The scan I had whilst I was on it showed my cancer as stable so that was good. If the side effects had been better I would have stayed on it.
Hope your treatment goes well.
Hi I've just recently started this drug and the injectons and after 4 weeks developed diabetes and this weekend started insulin to lower the glucose levels,. I was just interested to see how you are coping as I don't know of anyone else in my area that is on this particular drug regime.
The apelisib has given me high blood glucose. I have to inject insulin once a day to control it. My consultant said it is a very common side effect. It's a bit of a pain constantly monitoring my glucose.
I have found my sense of taste has changed and I'm struggling to eat and drink because everything tastes sweet and I have lost my appetite.
It's made me really fatigued so I have to pace myself throughout the day.
My treatment has been a bit stop/start because of the glucose levels but the insulin seems to have got it under better control now
Hi Julie, I am due to start this treatment in a few weeks time. Can I ask how you are getting on with it ?
Hi Ruby Jane
I wondered how your treatment is going on Alpelisib and what are the side effects ?
I am in rather a strange position (Although I know to be a lucky one.) I have been living with metatastic breast cancer wide spread in my spine, legs and ribs. I have luckily been on Palbociclib for Four years and five months, and am so pleased to say that my cancer has remained stable for all this time.
However for a reason I do not quite understand yet my oncologist want to change my treatment to Alpelisib, because I feel so well, and my cancer is still stable am worried about the possible 'life changing' side effects.
I would be so grateful if you could share your side effects and expereince of Alpelisib? My oncology appointment has been bought experience to next Thursday 27th October, so would be so so grateful to have some information by then, if at all possible.
I have been told my my lovely Oncology nurse to do my own research as there is so little information out there, she also informed me that I will be the first and only patient at UCLH Mc Millian Centre London.
Feel free to email me directly on : email@example.com
Or if you felt like it call me on : 07973 796371
All the very very best
PS. So hoping that the results you where expecting last December where good.
Many thanks for sharing this and sorry to hear about your side effects and the stop start nature of the treatment.
As you can see below I am hesitant about changing to Alpelisib as my cancer is stable, and have few side effects on Palbociclib that I have been on for over four years.
It sounds hard enough, but would you mind sharing any other side effects?
Wishing you all the best
I have just started alpelisib with fulvestrant. I'm on my first cycle. After taking piqray for 4 days I was admitted to hospital with severe pain in my liver. Piqray was stopped for 5 days whilst I was treated with steroids as the steroids was causing high blood glucose. I have been back on piqray for 5 days and my fasting blood glucose was 19.3 so the have told me to stop the piqray again and prescribed metformin to bring down my blood glucose. I go for another fasting blood glucose again on Monday and hope to restart picqray. Its been very stop/start which worries me.
Hi Holly and others
I would love to know the real life side effects of Alpelisib especially it's affect on anaemia.
I have wide spread metastatic disease in entire spine, ribs and legs.
My oncologist wants to move me from Palbociclib with Letrozole to Alpelisib with fulvestrant even though my cancer is stable as it has been for four years and four month. I know this to be a very long time for the Palbociclib to still to be working. I have the usual side effects that I have leant to manage well. The only new side effect over the last four months has been anaemia that has meant having monthly blood transfusions that leave me feeling better than I have for years.
I obviously do not want to change my treatment yet....My oncologist told me over a bad phone line to simply Google Alpelisib and she would speak to me in five weeks that has left me very confused. My Oncology nurse suggested that I asked questions here as the drug is new to her experience.
Has any anyone else been put on Alpelisib when their cancer is stable?
Do the side effects become less extreme over time?
Do other think that maybe this anaemia is cause to the cancer in my bone marrow as I believe it could be?
I know how lucky I am to be offered Alpelisib just feel it is too early for me as my cancer is stable, and side effect would effect the amazing and very lucky quality of. life.
Does anyone have information about the % of side effects mentioned on this website or anymore information or forums on the subject?
I have also been told be the only person at the UCLH McMillan Centre London. If you are interested as I know people are it is available there now.
Many thanks (New to this forum and so happy to have found you all)
The NICE committee meeting for this took place last Tuesday so we expect a decision to be announced shortly.
As soon as we have any further information, we will share the news.
can you update us on whether a decision has been made on this?
I read somewhere Novartis was providing this now for free in the UK.
Thanks in advance
Hello there - I’m querying how an individual can get tested for a pi3k variant in England. My oncologist says they don’t provide any genetic tests other than the standard er/pr/her2/ brca.
Many thanks for your message. The NICE appraisal for this treatment is still in progress and we would estimate that a decision could be from early February 2022.
The exact positioning of this treatment is being discussed as part of the appraisal process so we will need to wait for confirmation of the outcome. One area likely to be discussed is the use of this treatment as an option after a CDK 4/6 inhibitor (such as palbociclib, ribociclib or abemaciclib) in combination with an aromatase inhibitor.
We will certainly provide an update as soon as more information is available at the beginning of next year.
I am very interested in this treatment. Do you know how far off we are from it being Nice approved? Would it be offered to anyone with that specific mutation? By that I mean would it matter how many lines of treatment you have already had?
Currently I believe I would have to pay privately for the Guardant blood test and then again for the Piqray.
Thanks for your message. The National Institute of Health and Care Excellence (NICE) is currently assessing this treatment combination to see if it can be made available for use on the NHS for people with advanced hormone-receptor positive HER2-negative, PIK3CA-mutated breast cancer that has progressed after prior endocrine therapy (in the neo/adjuvant or advanced setting).
The scope which sets out what it is being assessed for can be found here https://www.nice.org.uk/guidance/gid-ta10825/documents/final-scope.
A decision is expected early next year and we will keep people updated through our website and social media channels.
Holly (Policy team, Breast Cancer Now)
can you tell me how you found out that you had the PIK3CA mutation?
was it through a trial or did you have to pay for private testing? I only ask as it’s something I would be interested in when I have my next progression.
Do you have any more information on this combination? I am ER+ HER2- with a PIK3CA mutation and would be interested to find out more as my options are running out. thank you.
i have sent you an email regarding my treatment. I am on the second cycle and will be scanned in December to see if it is having any impact on the tumours.
My name is Holly and I work in the Policy and Campaigns team at Breast Cancer Now.
I'm looking to hear from anyone who has experience of the treatment alpelisib (also known as Piqray) in combination with fulvestrant which is used for treating hormone receptor positive, HER2 negative, PIK3CA positive secondary breast cancer. Perhaps you may have received the treatment through the clinical trial.
This treatment is being assessed to see whether it can be made available on the NHS and I want to hear your views on the drug.
If you can help, please do get in touch at firstname.lastname@example.org