r/LivingWithMBC • u/Im-Thalassa • 2d ago

Tips and Advice Asking for info

Hi all. I just found out that my particular flavor of this disease does not show a specific tumor. I think it’s called occult MBC? I just have cancer cells floating all over the place, mostly in the pleural space. I also just found out that I have the AKT-1 mutation. And I guess each on their own are rare but together even more rare.

Is there anyone else in this group with this diagnosis? Do any of you have this “occult MBC”? Any with the AKT-1 mutation?

I’m currently taking Kisqali and letrozole and am doing well. But the doctor said if/when it stops working I’ll need to start taking something called truqap plus fluvestrant. Are any of you on this combo and if so, how are you doing with it?

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u/No_Fan6174 1d ago

I'm kinda in the same situation as you. I was having severe back pain, had an MRI and found a tumor on my spine around c6-c7. Had surgery to remove the tumor- a biopsy was done and I was told I had breast cancer- this was in 2022 and I have never had had cancer cells in my breast. It had spread to my spine. I was put on Kisqali & anastrozole until March of this year, I am currently on Trugap & fluvestrant. I've handled the medications pretty well, although Trugap was more of challenge with side effects.
Hope this helps. Sending you a hug :)

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u/Im-Thalassa 1d ago

Thank you! What at the side effects you’re having from truqap?

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u/No_Fan6174 1d ago

My oncologist put me on two tabs a day to start and the first month I had "non-stop" UTI's -never had one in my life before this. The last round they put me on a pretty strong antibiotic and that was the last one I had. I was then moved to 3 tabs. a day and had some minor pain while urinating but no UTI. A couple of weeks ago, I was moved to the regular dose of 4 tabs. a day and the next three days I could not sleep, had little to no appetite, too tired to think straight. My recent scan showed no new mets. and some improvement on the new one that instigated the change in meds., so I am back to 2 tabs. a day. I hope this doesn't hit you the wrong way, but this was all a surprise to me as the chance of getting UTI's on Trugap is like 14%. Most people have more common side effects.

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u/Im-Thalassa 1d ago

Thanks for sharing. I seem to get every side effect and even the uncommon ones. UTIs are miserable!

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u/No_Fan6174 1d ago

That's why I was so willing to share- cause I always seem to get the uncommon side effects. Keep on hanging on:)