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Rubraca Experiences

Syllive55 profile image
6 Replies

Is anyone taking Rubraca? What experiences have you had? I have been taking it for 6 months and I haven't had any really bad side effects. How long can you take this drug?

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Syllive55 profile image
Syllive55
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6 Replies
Lsampair profile image
Lsampair

I have only been on a few weeks Starting at a low-dose due to my labs being really tanked from prior Kemos for a extended period of time. I’m hoping it keeps my cancer checked. I have had no side effects either but my dose is very low. I would be curious how long people have been on it also.

Catcher910 profile image
Catcher910

I took this for about 8 months in addition to an IV drug in a drug trial. To be honest, it was a blind study so I don't know for sure if I was getting the drugs or placebos, but it was assumed based on my side effects. At first I was a bit tired, had constipation, occasionally nauseous and food tasted odd. Eventually my nausea became almost overwhelming, 24/7, and due to that and my resultant inability to eat my doctor decided to remove me from the trial. I had lost about 25 lbs. and was in very rough shape, unable to do anything. I got so weak I started falling. I gradually started to get better after being off the drugs for several weeks. I was left with kind of a troubling bowel problem, however, having multiple loose stools every day for months (after having been fighting constipation for so long), but my nausea went away and I was back to eating normally. The bowel issue finally has subsided. I was eventually diagnosed with microscopic colitis after a GI consult, colonoscopy, biopsies, and stool studies and I am feeling very well at present. I've been off all cancer meds for about 8 months now.

I'm happy to hear you are side-effect free on Rubraca. I don't know how long you can take it, but the trial I was in was supposed to last 24 months.

Here2Day profile image
Here2Day in reply toCatcher910

May I ask if you were on the ATHENA trial? What you describe sounds very similar to the trial I am on. My side effects have been minimal, which makes me wonder if I'm double-placebo.

Catcher910 profile image
Catcher910 in reply toHere2Day

Yes, it was the Athena trial. I don’t think you can assume you’re not getting either drug just because you’re feeling well. I’m sure there are many women in the trial doing well and feeling well. I just had the misfortune of having very bad side effects. Best of luck!

Steitlk profile image
Steitlk

I’ve not and no treatment has worked on me so far and I just started my fourth year, on the other hand my 87 year old mom had responded positively to everything and she is on her 14th year. She’s been on rubraca her since October of 2019 and doing great. She feels great and all tests and scans have been positively. It doesn’t cure but stops any further tumor growth. She must take it for the rest of life.

Here2Day profile image
Here2Day

I am on a clinical trial which includes Rubraca, so I don't know for sure if I'm getting it. But either way, I'm not experiencing any side effects.

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