Are you on Afinitor? Please help me stay on it!

TarheelMichelle

Ladies on Afinitor, I need your advice.

My MO has done testing on my tumors and determined that Afinitor can successfully fight the cancer. (I'm taking it in combination with Tamoxifen, which alone held off progression for about a year.)

This was proven in December. I took less than 20 pills of the Afinitor10 mg, and had a measurable decrease in tumors in my lungs and bones. 20 pills!

Unfortunately, I was coming off radiation to my spine, got a horrible lung infection, stopped Afinitor.

In March, we started on 7.5 mg, every other day, to see if I could tolerate that better. I had terrible stomach pains (despite Pepcid, carafate, and "easy" foods), anger and depression that was worse than when I was on steroids, (everybody and everything made me mad or sad) and a painful skin rash all over my body (so bad that I couldn't shave my legs, applying Benadryl cream felt like barbed wire). The 7.5 had more side effects than the 10!

But the results were still good. Even with just a few pills. So now we are going to start me at 2.5. I pray that I'm hypersensitive, and even this low dose will have a positive effect.

Does anyone have any advice on what to do to reduce stomach pains, or skin rash? I'm thinking about restarting Wellbutrin for my moods, but dislike adding more drugs to the mix.

This is the second drug that works wonders on my cancer, but is hard for me to tolerate. I am trying to stay on this! It is hell to know there's a drug that keeps my cancer at bay, but my body resists it.

On the positive side, I have only had one mouth sore, on the 10.

Please help me! I appreciate any advice, even if it's something you tried to alleviate symptoms that didn't work. (Anyone want some 10 or 7.5 Afinitor?)

TarheelMichelle

anyone?

Tomboy

Im up, Michelle, but sorry,I really can't help you. gentle hug though. I have been told if I have recurrance, that is what I will have to do. I really don't want to, ever. But I was reading this ladies blog the other day, and she said the first month was the worst. I know Romansma does it, but maybe in combo with femara, which I found to be intolerable by itself. I am so sorry, it sounds so nasty..

208sandy

Hi Michelle - sorry I just saw this post or I would have answered earlier - first of all Romansma is off the AA combo and is on to Ibrance - she stuck out the AA for a very long time with very severe se's (I keep up reading on the AA thread) - anyway I was on AA for four months and yikes it does kill those cancer cells but it is almost impossible because of se's - I did fine on the 5mg but the 10 killed my lungs in two weeks I was so short of breath I wasn't sure I'd make it. I also got giant sores on my face and scalp easily vanquished by prescription strength hydrocortisone cream. I didn't get mouth sores because my onc had me prophylacticaly (sp) using a form of "magic mouthwash" two weeks before the AA started - it was horrendously expensive and not covered by insurance but worth every penny. I would have stayed on AA at 5mgs but my onc is a purist and wouldn't let me stay on it unless I took full dose - go figure - there are some on the AA thread who were treated for a while on 5 mgs I don't know if anyone stayed on at 2.5 but why not start there and try to work up - it certainly is a tough treatment but it does work but I am not sure anyone is on it for a long time - I am presently on Faslodex and although I have se's - mostly very tired and sometimes nauseous but easy to deal with and it is working so far. Here's hoping the 2.5 works for you, I'll keep my fingers crossed. Sending hugs, S.

leggo

Michelle, almost everyone I know HAS to have steroids while on this drug to deal with the side effects. I see you mentioned being on one previously in your post. I have very limited knowledge about steroids, but is there a different steroid you could try? I don't even know if there are choices when it comes to steroids, but thought I'd throw it out there just in case there's an option.

From my understanding, Afinitor is really hard on the liver. I'm not sure if it's related, but everytime my liver enzymes were high, I'd break out in a burning, itchy, hive-like rash, like a million paper cuts. Topical stuff never helped, neither did oral antihistamines. The only relief (sort of) I got was when I soaked in tepid water with oatmmeal. It didn't go away, but it eased the pain a little.

I wish I had more ideas. I'm so sorry for all you're going through. I think there's quite a few women on this drug. Hopefully, if nothing else, the bumping will prompt someone to chime in.

leggo

I forgot to mention, when my liver was at it's worst, the stomach issues were so severe. I was prescribed metoclopromide (or metaclopromide sp?). It helped enough that I could keep food down for at least a few hours. Maybe that would settle the stomach pains down a bit?

TarheelMichelle

Thank you so much ladies. This information really, really helps me a lot. 😃

Leggo, I'm not sure if I can stay on steroids long term, my side effects on the steroids were pretty bad too and I was only on a very low dose about six weeks. Your rash sounds just like mine. I'm also on quite a bit of pain medicine, and I worry that all of the strong drugs may not be interacting well. And it's frustrating because when I bring up my concerns to my doctors, ("Would an antidepressant help or is it going to interfere with the cancer medicine?" nobody seems to know anything. Just guesses.

Tomboy, thank you for the kind words! It means a lot.

Sandy, I think ibrance will be next for me. I have two oncologists at two different hospitals wanting me to stay on Afinitor, because they know it works. But I've yet to see anyone who hasn't suffered from it. Femara made me suicidal (I should have started out every other day, so my body could get used to it), and Aromasin wasn't pleasant either.

Thanks again.

208sandy

I was never given steroids while on the AA combo and thank God for that - I don't do well on them. I was suicidal on Arimidex and that was right after I had stroke level bp on Femera and I'd guess the Aromasin wasn't going to be a good choice either. So far the Faslodex is working and I am hopeful I can stay on it long enough to see if the Canadian government will approve Ibrance.

TarheelMichelle

I wanted to say thanks again to everyone for advice and support. I am still on the 2.5 Afinitor. I'm tolerating it pretty well. My stomach pains come and go, but no rashes or mouth sores. My last scan in early Aug. showed stability, with a bit of regression in some bones. I'm hoping my next scans also have good news. Very happy that I'm getting good results on a small dose.