Loss of appetite and/or weight loss with Afinitor/Aromosin combo

dorimak

I've seen comments on these boards about patients losing weight on this combo. Wondering if the weight loss came from loss of appetite? I hadn't weighed myself say for month of August and was disturbed in Sept to find I'd lost about six pounds and I'm quite slender. Since then I've dropped another 3-4 pounds. I've had no appetite problems for the last three years on IBRANCE/Femara and then Letrozole. I started AA in November so the weight loss and appetite loss don't quite line up. Wondered if it's a delayed side effect or something else. I feel like my saliva is not normal and nothing sounds good so having to force myself to eat. Wondering if anyone else experienced that either with or without this protocol.

pajim

Dorimak, I don't have a lot experience with this but I didn't want your post to go unanswered.

I have had weeks where I literally can't eat -- stomach doesn't like it or I throw up, and weeks where I don't want to eat (not hungry or I feel full right away). The nurses at my hospital react to those separately. Neither of those situtations have lasted long enough for them to tell me what to do about it.

So I'm not sure how to advise. There may be some good advice on "how to eat when you don't want to" either on the main site or at the American Cancer Society site.

You do need to eat if you're losing weight and don't have a reserve (like me!!). One option is lots of small meals? Or try drinking Ensure in order to get some calories in? Or eat with people? I've noticed that I and others eat more if its in a social situation.

Interesting about the timing. Afinitor is one of those drugs that could cause anything. Salive differences, mouth sores, all those would make it hard to eat. I didn't have appetite problems on it but no reason you couldn't. If you switched drugs about the time you were losing weight you must have had progression? Could the cancer have leaned on something? When I go out of whack the first thing I lose is the GI signals. "I'm hungry" or "I have to go to the bathroom".

Anyway, Just throwing some things against the wall in case they'll stick for you. Hoping someone who knows a lot more than I will be along soon.

dorimak

Thanks pajim for your response and helpful advice. I've been trying to follow the various tips on getting food into me. My bigger worry is it the cancer that's causing the weight loss. I talked to my MO today and mentioned it and she said she didn't want to see me losing weight. I'm due another PET scan in a couple of weeks so she wants to see how that goes and maybe send me to a nutritionist. She did suggest that anxiety and depression can cause both appetite loss and weight loss which actually made sense. It reminded me of a couple of times when I'd had major stress and depression and the weight fell off. Your situation is interesting in that you seem to have bouts of either not feeling like eating or can't eat. While I'm sure it is the meds, it's interesting that it's not consistent. Hopefully you can take advantage when you're up to chowing down. Blessings to you. You seem to have had a great run with Faslodex. I was on and really appreciated the fact that it was only a once a month thing. Unfortunately I only got about six months out of it. All the best.

pajim

I hadn't thought of anxiety/depression. Very good point.

I get these episodes if I get a viral or bacterial illness. And now that I'm on a cytotoxic chemo it doesn't take as much to knock me off kilter. I lost 6 pounds in the first few weeks on this drug but have since stabilized the weight. A little unfortunately -- I'd like to go down about 7 more pounds before stabilization. It would still leave me with some padding (so to speak).

May the PET scan results be excellent. . .

Pam

ABeautifulSunset

I lost a lot of weight while on Afinitor. I was told that the difference between cancer causing weight loss and chemical causing weight loss is this. When you have cancer, even if you eat, you still lose weight. At first you won't even have a loss of appetite, but you'll start losing weight.

If it's just a loss of appetite, your weight loss will coincide, and when you do eat regularly again, you will put the weight back on.

masonsmawmaw

I lost a total of 27 pounds on this combo, but have now stabilized. I attributed it mostly to the loss of appetite and I did have mouth sores for a while that kept me from eating properly. I'm told that Affinitor also interferes with food absorption, so that could be part of the cause. All in all, I must say I don't really like this combo because too many weird things have occurred since I started at the end of October. My latest "complication" was shortness of breath and low oxygen levels. After numerous tests failed to reveal anything definitive, I have come home from the hospital on 2 liters of oxygen. Not a happy camper right now!

MM

Grannax2

YES all of the above and more happened to me on my Five weeks on AA. The deal breaker was when it spiked my blood sugar levels so much that My PCP need to change me to insulin. She also said When you get off this TX calls me and I'll get you back off of insulin. That was it, I stopped taking it that night. I didn't ask, I stopped taking it. It also spiked my triglycerides. These are known SE of AA. These and weight pouring off. Why do they even use it anymore? I've had all the BIG chemos aNd never been. Also very anemic.