Afinitor and Aromasin info

I jus started Afinitor/Aromasin a couple of weeks ago. I was worried about all the side effects that I've read about, but so far, it has been pretty easy. My onc started me on the 5mg dose because I'm small and he wanted to see how I tolerated that dose before moving me up. I have a few mouth sores, but they aren't nearly as bad as when I was on Doxil. I rinse a few times a day with a non-alcohol mouthwash, and that seems to help. I also have a Lidocane prescription mouthwash to use if I need it.

I do have low energy, but that has been for awhile, and no worse than before the new drugs. Good luck- the important thing is, will it work? If so, I'd be happy to stay on it as long as I get results.

I started out on 10mg of Affinitor, but the SE were just to much to bear. After 8 months, I am now on a 5mg dose still trying to rein in some of the bothersome SE. Be aware, most patients tend to experience weight loss....my loss of appetite started almost immediately and I'm down 30 pounds (stabilized at 122 pounds). Mouth sores were also horrible but have disappeared over time and not recurred. Fatigue, shortness of breath and body aches round out my list of complaints, although I can't say for sure that these are solely related to the affinitor. Pet scan tomorrow, cautiously optimistic, but I really am expecting progression just due to some strange symptoms that I've started having. I think my onc expects the same. Will be wonderful if we are proven wrong!

Wishing the best to all of you on this journey!!

Angie

Myangelwife- I would say that the most unbearable se were the mouth sores and the loss of appetite. I should also mention that I have type 2 diabetes and as virtually promised, my blood sugars have soared on the drug....so much so that I have had to start on insulin. The pain has more in less set in within the past few months; legs, feet, back, ribs. Again, I'm not sure if Affinitor or cancer related. Some more new symptoms are starting to come up now so we well see what the PET shows. I get results on Monday afternoon and will post here as soon as I can.

If your wife starts to get even a much as a tingle in her mouth, I would request a dose reduction immediately before the sores get too bad.

Wishing you all the best!

Angie

Hi MyAngelWife, I was on A/A for three months. Actually along with Ibrance which probably caused everything to be amplified.

The only actual SE I remember was mouth sores. They'd come and go. I wasn't really tired.

BUT. Afinitor is known for causing weird inflammatory problems. All of a sudden I got short of breath climbing stairs. Then I realized I was getting a fever at 5:00pm every day.

You know how this goes I suspect: "Hi, I've been having fevers of 102 that go away with Advil". "Get down here right now". I arrive at the cancer center. "Oh, and I'm short of breath going up the stairs". "How long has this been going on?" "About a week". "WHAAAATTT??!!???" Sometimes nurses have no sense of humor.

It was pneumonitis -- lung inflammation. Took 2 weeks and many steroids to cool down the lungs.

So watch out for the weird stuff. I hope A/A works for your wife. I wasn't on it long enough to find out if it worked for me.

myangelwife- I started AA in March after failing I/F. I used the mouth wash four times per day for the first 2 months as instructed. I didn’t get any mouthsores. I tapered off over a week and no mouth sores. If my tongue feels or looks a little raw I use baking soda mouth rinses now. I had fatigue and a few mild weird rashes the first month. The fatigue is mild now, my anemia is better than when I was on Ibrance. My first PET will be in a few weeks. TMs have gone down.

This drug does seem to cause weight loss in diabetics per this thread. I have not had any weight loss and blood sugar is fine so far. Cholesterol went up a little however

Good luck!

No but I'm not a typical case. I live in Massachusetts where there are all sorts of laws about what must be covered, and I have the very QUEEN of employer health plans.

Glad the SEs have been minimal. May they continue to be that way.

masons mama- yay! Love good news. I drink siggi probiotics every morning- think it helps thestomach?

I have good news also! My PET from yesterday basically said everything is stable, improved or resolved! TMs down by 40% since started AA 4 months ago.

I think a little champagne in my future!

myangelwife- I have heard of TMs going up early in treatment with the Ibrance- supposedly due to cancer dying. Mine have always gone down early in treatment- then they bounce around a lot and when the Ibrance stopped working they steadily went up. They really increased between treatments. I have fatigue and weird rashes too. No fullness, no weight loss, blood sugar is normal, cholesterol did go up a bit, liver function and all labs normal except slightly anemic. Hopefully she will respond- some people need to decrease the dose also. But, it is so good that no mouth sores- that is what made this drug intolerable before the mouthwash solution.

jobur- how are you doing? I am still fine. Of course every month I do the blood work and then find out if I am fine for another month. Month to month. I just got back from a trip that went well also. I am trying to live life as normally as posible for now.