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Cheryln38
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Re: Inavolisib vs Alpelisib
Dear ter1969 Hope you feeling well. I am very interested in Keytruda, this has been mentioned as a possible treatment for me. Have you found your combination tolerable so far. I am finding the doxorubicin pegylated liposomal awful. I was very lucky with my other treatments with side effects, but this one is really knocking me about. I am antibiotics at the moment as I got an infection. I am hoping when all my tests are in with CaSP my oncologist finds a great combination. Every treatment I have had, I had progression and it's tiring getting used to one and after 3 cycles at the most, I have to start again. After the piqray, I was happy some shrinkage in some areas,but new spots in my ribs this time. I have it in most of my spine, skull,lymph nodes,ribs, right hip, liver,neck lymph and left lung. My lung though didn't show up on my last CT but was there on my pet scan prior. It was quite small so hopefully it stays that way. I am glad though I insisted on another biopsy and to find out my original diagnosis has changed, I might have a chance to get the right combo. I would love to hear any information on your treatment if that's OK. Keep strong 💪 🩷🩷Re: Inavolisib vs Alpelisib
Hi Amelia Hope you are going well. I got on the Alpelisib(piqray) and fulvestrant, but unfortunately after 3 cycles I got progression in my ribs. I had terrible pain and had to go hospital and after scans they saw 2 new spots. I then asked for a second biopsy which I had in my hip and my diagnosis had changed to TNBC. It was upsetting but also a relief to know why all my treatments weren't working. The treatment though helped in other spots and had shrunk a few lymph nodes and my liver lesions. So the trial worked for the pik3ca mutation. As for the drug it self, I found it very tolerable hardly any sickness after the first week. I took my sickness tablets as required. I was put on metformin as my blood sugars crept up, these were checked every morning half an hour after waking up before food. You will be given a machine to check and you will record these in your booklets they give you. Both drugs on the trial require this. It gets easier after the first few days to check as it just gets part of the routine. Try and take your tablets same time everyday after eating. I found lunch time for me worked well. You will feel fatiqued for the first 2 to 3 weeks but it gets better. I didn't get a rash, a few aches but nothing major in the 3 cycles of side effects. Diarrhoea and sickness are the most prominent ones but after a week I was ok. Have your gastrostop ready to. They should give you mouth rinses for sores, I never got any though but keeping your oral health good helps. Rinsing your mouth in bi carb 1/4 teaspoon and 1/4 teaspoon of salt in one cup of warm water after meals helps to. Have you had all your tests beforehand? I had my eyes tested before and just before Christmas I had another, even though I was off the trial I wanted to complete everything. I think it's very good treatment and I hear the other one is as well from other ladies in the UK. Just wasn't for me. I am doxorubicin pegylated liposomal at the moment had two cycles, one more before scans. This treatment has been my worse. Had a few side effects. My oncologist has sent my biopsy of to CaSP in Sydney. I just need more blood tests and then hopefully with the research on my DNA etc they will find treatment catered to me. I am an unusual case as Iam on my 4th line in 16 months, a change again in my cancer. Er+pr+ her 2 negative originally, then pik3ca and now Tripple negative. The fulvestrant jabs go into your upper bottom in the muscle, it does hurt a little at first and aches in the muscle but for me it wore off by the time I got home. I travelled 4 hours for this trial there and back. Just rest after you have them. I had them first on Day 1, Day 15, Day 28 then only Day 1 again of each cycle. I wish you all the best lovely. it's really a good treatment. Two tablets too that's what I loved. Let me know how you go. I will be thinking of you 🩷🩷Inavolisib vs Alpelisib
Hello Thrivers I was diagnosed last September stage 4 de-nova. The cancer had spread from my breast to lymph nodes, to spine and right hip. Pr,er positive her2 negative. I started on Tamoxifin, then Lextrozle with Riboclicib, progression more in my spine, rib and liver. I was tested for the pik3ca mutation. I then went on a clinical trial and was put on xeolda. Only got through two cycles as my cancer had spread more again. In the meantime I have had 5 days of intense radiotherapy on my breast tumour as it had grown and split my skin, the pain was awful and still I was told I couldn't have surgery. I had an oophorectomy in July so I no longer need zoledex implant monthly, only my bone injection. So I then have been off treatment for 36 days. I was referred to another oncologist a 2 hour drive away to go on another clinical trial with the drugs inavolisib and Alpelisib with fulvestrant injections. Hopefully this will start next week, but unfortunately yet again from my CT scan in August till last week my cancer has grown more in my liver and now in my left lung. To be honest I am so upset and angry. Alpelisib is available but still not on PBS if this was offered before the standard treatment xeolda then I might of been in a better position. Has anyone been on a clinical trial and has got on Alpelisib. The other one is not well known, but both work on the pik3ca mutation. Has anyone been left long in-between treatments for cancer growth. I was told by my nurse let the professionals do there Job and you do what you can control. I am very disheartened as I feel MBC for me has been here take another pill. Thank you 🩷666Views0likes7CommentsRe: New metastatic diagnosis
Thank you Hankster I just had another CT scan and bone scan, hopefully everything will be ok to start the new treatment. It's so wonderful to hear positive feedback, I hope you are well. I said to my children I am going to be around a lot longer just to annoy them 😂. They are so wonderful. Got to keep keeping on 🥰Re: New metastatic diagnosis
Thank you julez1958. I updated my profile, I am not sure how to join the private group. I will have a look. I had just got comfortable as best as possible with the Riboclclib, but now got to start again on a new medication, I feel very blessed to be able to try another treatment. I have lovely nurses at Port Macquarie hospital. Hopefully if I get on the trial I will be monitored closely. Thank you again for your reply much appreciated 🥰Re: New metastatic diagnosis
Hi there I was diagnosed last September stage 4 de nova er,pr + her 2 negative. At that time it was in my left breast, lymph nodes and bones. I started on Tamoxifen, then letrozole with Riboclclib, Zolodex implant and bone injection monthly. Unfortunately the treatment didn't work and my recent scans showed it's in my liver. I am now awaiting to see if I can go on the Capture trial if all my tests come back ok, I have the PIK3CA mutation. Just wondering has anyone started on the alpelisib and fulvestrant or anyone on the Capecitabine and any bad side effects. It's been a bit of a whirlwind from having no symptoms and just going for my normal mammogram as BC runs in the family and told straight stage 4. I have two teenagers who are amazing and give me plenty of strength. Look forward to hearing from anyone with information. Keep strong my sister's 🥰
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Living with metastatic breast cancer
This is group for people living with metastatic breast cancer (also called stage 4, secondary or advanced breast cancer). This is a safe, understanding space to connect with others who truly get what it’s like to hear the words that you are living with metastatic breast cancer. Together, we offer each other strength, compassion, hope encouragement and a place to talk openly—whatever you're facing.
