On Nov 16, 2023, the FDA approved another drug for those who have developed the PIK3CA. Mutation after first line treatment for the HR+HER- type. It’s another drug in the same vein as PIQRAY which also has to be used with Fulvestrant. This one is from AstraZeneca but it seems to have all the same side effects and problems that Piqray is known for. I got excited but it’s not a game changer I was hoping for.
still want to have a discussion with my ONC but it looks like Xeloda will still be my next best friend. I have included the link below if you fall into this category.
Still hoping for that miracle shot …
My radiation is progressing without any great changes…3 days left me fatigued but the thanksgiving break gave me some welcome respite. Back, hips and legs still achey and spasm prone…but hmm…do I feel a little better ? 🤞.
Hi Dragonfly2 hope you are keeping well. I was on the piqray and fulvestrant for my 2nd clinical trial, unfortunately I got progression again. The one it was against was inavolisib with fulvestrant which isn't supposed to be as toxic but a lot more monitoring on trials.
I was fortunate though as I only had one bad week with the piqray. Had to go on metformin as a precaution as blood sugars go up.I was on xeolda for my first clinical trial but I got progression on that one. But I found the side effects manageable.
I am going on my 4th line of treatment in 14 months doxorubicin.
Fortunately tomorrow I am having 2 more biopsies in my hip and neck to see if my cancer has changed from er+pr+ her2- pik3ca mutation. Hopefully I will get some answers why nothing is working.
I have mets to my bones and liver. Diagnosed at 49 de-nova.
I have had an oophorectomy and 7 rounds of radiotherapy which has helped heaps for palliative pain relief.
I am so glad they are working more and more on new treatments.
I live in Australia, we are trying to get piqray FDA approved here and on the PBS as it's costly without being on a trial.
We are so forward in some ways but behind in fda.
I am praying for you in the rest of your radiotherapy. I get so fatiqued to. I am on a good pain relief for my bone pain. I try and walk though when I can and swimming helps.
Dear cherry38…I am humbled by your stalwart ability to face this terrible disease from such a young age. Both of us would have died years ago for sure thanks to modern intervention…but still, it’s a sorry slog through difficult medications. I keep telling myself …that one day soon there will be a solution…and an end to the pain.
I sincerely hope that Australian medical care covers these newer meds. Over years of paying health insurance, Americans experience many costs…but I’m grateful for the interventions available. It’s interesting to read how radiotherapy has been so important in the course of managing pain, I hope I can enjoy some success. Thank you for sharing your perspective ; I wish you only the best and an answer to your prayers. 🙏🙏🙏
Thank you for the update. Hoping that the radiation will kick in soon and help with all of the pain you have experienced. How many more treatments do you have? Hope you had a nice Thanksgiving. Sending you hugs and prayers for some good results from the radiation and a definitive course of action for the next line of treatment. Take care.
Glad you had a good break to enjoy your family and friends. I had radiation early on but was not having pain before the treatments, it was done more to prevent pain from happening as the lesions were small. I never had fatigue though, but heard that is a common side effect. Praying the rest of the treatments go smoothly and work well. Please keep us posted. Hugs
I’ve been on cape for 13 months now. Find it ok. Get tired but that’s all. Many people get neuropathy so make sure you use a strong moisturiser on your feet and hands morning and night. I use MooGoo. It’s non toxic.
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