Shirley

[Moonfry]

I MBC that had spread to bones now found two small spots on lungs. I was taking ansezole for estrogen blocker and venezico .I am ER statuses positive , HER2 negative. They say I have mutation on my cancer an wants me take a treatment PIQKAY and Fulvestrant. I am very nervous taking these. ANYONE ELSE REFUSE THIS TREATMENT just wanted to know!

[seniorcitizen]

I'm curious as to why you want to refuse those drugs. I currently take fulvestrant (faslodex) and kisqali and have a good quality of life. Thanks.

[MettavivorDS]

I’ve been taking fulvestrant for a couple of years. It’s a very powerful hormone therapy. I’ve developed a PIK3 CA mutation. Piqray used to be the only targeted therapy for PIK3 but now there’s a new drug called Truqap. It has fewer side affects and is easier to tolerate. Truqap is taken in weekly cycles of 4 days on and 3 days off. I’m in the third week and really enjoy not having to take pills on the weekends. The side effects I’m feeling are mild and easy to tolerate. I’ve heard that Piqray can be harder to tolerate than Truqap. If you have the PIK3 mutation, you might want to check about the availability of Truqap.

[Hazelgreen]

My breast cancer mutated, and spread to my spleen, bones, skin, lungs et al. This happened 5 years ago. I take Kisqali (ribociclib) and Ibrance. It keeps my cancer under control, and gives me a good quality of life. Since the drugs are in pill form, I do not have to see a physician except for follow-up every four months. If I were you, I would refuse having regular shots.

[Dragonfly2]

hello, you are experiencing that feeling of anxiety that I have whenever there is a change of course in treatment. I was in your place just 8 months ago. When IBrance had failed and my Mets were acting up, the testing showed the PKC3 mutation. I was saddened that I had to change..but that’s the nature of cancer. It mutates and thank goodness there are still options.

Piqray can have a rough start with diarrhea and a brief allergic rash reaction . This was controlled by Claritin, and topical creams…eventually it’s just another pill. That being said, Piqray can also raise glucose levels so now I also have to take metformin to control this medically induced diabetes. Again, it’s an adjustment but not terrible.

The fulvestrant shots are for the estrogen therapy. I didn’t like that but now I use roll on lidocaine before my monthly injections and the shot is not painful at all. There are posts about fulvestrant on this site… I hope this allays some your concerns about a new treatment.

. But don’t forget that your communication with the ONC should be an important part of your treatment.. he or she can only be truly effective if they know and understand your concerns.