antifitor

[Praising]

how long have you been on the drug, side effects, Mets t12 and right iliac checking on shoulder…

[BorisCarloff]

howdy everyone is different but I could only be on it for 3 months. I had constant diarrhea, high cholesterol, about to need diabetes medicine, nose bleeds, mouth sores, extreme lethargy could not walk a block and inflamed lungs, hard to breathe. Prior to taking I had NONE of the above and was athletic. Could not exercise the whole 3 months. It was very rough for me others have different better experiences.

[Bettybuckets in reply to BorisCarloff]

that sounds rough!

[BorisCarloff in reply to Bettybuckets]

Was on 7.5. MSK doesn't start low, they go high to low.

[Oberammergaux2]

Hi! I’ve been on Afinitor and Exemestane since about 2007. I had diarrhea and fatigue along with some mouth issues. They started me on the “recommended dose” of 10mg which I found miserable. I have weaned down to 2.5mg per day and my only side effects are the usual fatigue (manageable), some mouth issues (see my DDS often and use Peridex), occasional diarrhea (manageable with immodium) which seems to relate to what I eat. I have had some liver mets which have been taken care of with gamma knife radiation which sure beats any chemo!

They took me off Afinitor for nearly a year for a “break” 🤦🏼‍♀️ and I ended up with more liver mets. So after much haggling with MDs, I’m thankfully back on those meds and praying I haven’t lost ground.

I’d say the side effects were dose related for me and I’m a huge proponent of starting low and working up to doses you can tolerate. Now the Afinitor is just a pill I very gratefully take.

Each of us has our own reactions to these meds. Overall, mine has been positive.

Hugs to you and will keep good thoughts going your way!

[13plus]

Side effects were fairly ok for me but Afinitor didn’t work for me. It maybe stabilized me for 3 months and then rapid decline - so 5 months tops on it

[Praising in reply to 13plus]

What did you go to? What now. Did you have much progression? And what how much progression means a change? 1 leisuin 3?

[13plus]

Well your next treatment is going to depend on what you’ve already been treated with so far. I’d already had 2 types of CDK 4 inhibitors and exhausted the estrogen blockers. So after Afinitor I had the chemo pill Xeloda, works for about 6 months. Now I’ve just started Enhertu which is a type of targeted chemo for Her2 + and low (I’m Her2low ).

I don’t recall how much progression I had but my liver was already becoming a concern before I started Afinitor, so really any progression was enough to decide to switch.

There is a protocol of percentage change from one scan to the next to count as progression but I can’t recall what that number is either sorry. If you only have it in the bones, and in those few places I think you’re doing ok! The organs are the big concern. I was happy to have the lesions only in my bones for the first few years .

[Praising in reply to 13plus]

Yes in my bones…but mild progression in 2 places and wants to switch to antifitor. I didn’t know you could try bother cdk4 inhibitors. I’m on Ibrance. Continuing for another 3 mo….then scan.

[13plus in reply to Praising]

I think you can anyway, re the CDK4. The second one I had was for anspecific genetic mutation but there are others .

It’s good your doc isn’t changing your treatment straight away. If it’s a really slow progression and you don’t have vulnerable spots it means you get to spend more time on that drug and stretch out viable treatments