faslodex and capivasertib / Truqap

Hi, I’m one of the champions here in this group and I'm sorry to hear of your diagnosis.   I assume the information you found online is this, Info link but I'm posting the link in case it's different.

Whilst you're waiting for responses here, you can also give the lovely folks at the Macmillan helpline a call.  They might have some more information to help you and you can reach them on 0800 808 0000 from 8am to 8pm every day.  Best wishes 

Thank you for your reply,

I did call Macmillan and they referred me to the same link. I know that this is kind of standard information. I was hoping to hear from someone who actually been on faslodex and could share their living experience. 

The same with capivasertib. When I was trying to find anyone, even on Quora or reddit, it started to look like I am the only one in UK having this medication  , which I do not believe is true.

k

Hi KateUnlucky 

You could try adding the brand name for capivasertib to your post in case there are people who recognise it by that. I think it’s Truqap. 

I do have secondary breast cancer but of a different type so I haven’t had these drugs and can’t bring personal experience. Breast cancer now do have info on capivasertib. https://breastcancernow.org/about-breast-cancer/treatment/targeted-therapy/capivasertib-truqap

Drug leaflets are scary things as they have to list every possible complication.  Just take a look at the leaflet in a standard packet of paracetamol to get an idea of this. In practice people don’t suffer all the side effects. A regime with the sort of effects you describe just wouldn’t be tolerable for anyone. With secondary cancer, the objective is to keep the cancer under control and allow you to live with the drugs long term - formulations are usually milder than those used in the “curative” setting. 

I don’t think you can really know how it will work for you without giving it a try.

HI,

Thank you for your reply.

I am not on this treatment yet and the description is just compilation of those few posts from drugs.com, reddit, and other cancer forum. My oncologist only said about high possibility of getting diabetes, as it changes insulin levels, and as a consequence of this - high risk of UTIs. 

What is bizarre - not a lot of patients is on this regiment so it is hard to get some "real life data". I have found some horror stories about faslodex though

I guess there is no other way but to try it.

kate

Hi, I recently signed up with Breast cancer now. To join some of there webinars. I watched one on hormone treatments because that is what I am going on to next. They explained exactly how they work and how some work better on different types of cancer ( high risk and low risk) weather your premenopausal or not things like that. But they also said if you have any worries about anything not covered in the meetings to give there team a call 03450771893 breast cancer now. I find that the oncologist don't explain things in any detail just tell you the Risk rather than the reasons. I need the details so I understand how and why things work. And this gives me the confidence to go ahead. 

When I first got my secondary diagnosis, pembrolizumab had just been authorised for both metastatic and early stage / high risk tnbc. I was one of the first 2 patients put on it by my hospital (the other lady being early stage / high risk). My oncologist had no experience - breast cancer oncologists in general had no experience. Reviews on drugs.com were mostly of the “don’t touch it, my dad died after taking it” type. I had 2 strokes of luck. The first was my niece (who is a paediatrician) had a friend who was an oncologist specialising in melanoma, where it had been used for several years. I was able to tap into her experience. The second was my oncologist’s new registrar had just finished a rotation in lung cancer, where it is also used. She was more help than the consultant when I experienced issues on the drug. 

So it might be worth finding out whether there are any cancers for which it has been used longer, and posting a question on the relevant forum on this site?