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 email@example.com
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.
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.
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)
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.
I have just joined the Forum - I have been on this treatment for 12 months. How are you getitng on? I didnt get high blood glucose thankfully -but skin especially around my eyes is v sensitive and my nails are very brittle and dont grow much at all. ?
Ive just joined the Forum and seen your post. Ive been on this treatment for 12 months now. I would be really interested in the feedback you got on how others are managing the treatment?- There still doesnt seem to be much information out there on it - Im the only patient that my Oncologist has whose on the treatment
thanks very much!
My oncologist is talking about putting me on it in the future. And I wondered how you personally had found it over the last 12 months?
Thanks for your post. At the time of my post there wasn’t many people receiving alpelisib as it was before it became widely available on the NHS so I didn’t get a lot of responses.
Have you seen Breast Cancer Now’s information about alpelisib?
If you have any questions about your treatment, you can email our nurses or phone our free, confidential helpline. The number is 0808 800 6000.
Hi Lottie and Holly
I am on Apelisip and the hormone injection as well. I started it 1st week in February this year so 6 months now. I have kept well although it gave me diabetes, unfortunately its a high risk side effect, which is under control with insulan daily inj. f i am stopped the Aplisip then the diabetes will disappear as is drug induced. Other effects were just minor like flateup of my diverticulitis but thats settling down. I did lose weight but that was due to the change in diet because of the diabetes and i cant have much carbs as that does seem to spike my glucose levels. My ct scans have up to now been encouraging and everything seems stable in the multiple places. My next scan is next week so i get a bit twitchy about that. For me at the moment its made my life easier. As far as i know there are just 2 of us on this drug from my hospital and i found it hard at first till i found this forum. Let me know how you get on. You can private message me as well if you want to. Best of luck to you on this journey.