Afinitor/Aromasin 2013

Started Afinitor/Exemestane about 1 1/2 months ago. Radiologist is having me hold Afinitor while getting radiation, saying that the liturature is unclear on safety/health concerns. Mouth sore with Afinitor has cleared up since stopping. Declined steroid suggested for mouth sore. I think salt water rinse was helping. But it is discouraging to read that the effectiveness of exemestane with Afinitor with vs Exemestane alone, drops very quickly with time. https://pubmed.ncbi.nlm.nih.gov/29992557/

NicoleRed - mouth sores started a couple weeks into Afinitor. I was using a salt rinse, whch I think was helping. I declined a steroid that DR offered. The sore has completely healed after stopping Afinitor. Radiologist wanted me to stop Afinitor because he thought the literature was unclear about effects of radiation with afinitor.

NicoleRod - please let us know if/how the L-Lysine worked for Afinitor mouth sores. I am on a 4 week break during radiation. But it sounds like a better option than a steroid

NicoleRod - I guess I should ask more questions. Don't need the rinse now since I'm not taking Afinitor during radiation (Radiologist thought iterature unclear about radiation and Afinitor). I guess when I think of steroids I lumped them all into the same group, and long term effects. Also hate chasing SEs of one drug with another drug. One SE seems to be lowering immunity. Would I need to take it all the time while taking Afinitor? I remember stories about body lifters /health issues, people taking prednisone and looking forward to not taking it (SEs).

Scalp sores - has anyone experienced these? I think it might be the Exemestane. Afinitor did give me a mouth sore which immediately cleared up when I stopped taking it for radiation. Someone posted about "bites" in elbow area on another forum

Bluegirl, I have terrible scalp sores. They are painful and itchy, acne-like with white head. They are literally all over my scalp and I have a hard time to find a comfortable head position on my pillow to sleep. You are right about exemestane May also causing this problem. I was off Afinitor for 10 days due to low platelets and during that time I still had these scalp sores, but they were less severe. So if anyone knows how to make these sores better, please let me know. My MO offered no remedy on this except for a dose reduction, which I said “not yet”

thanks for the info, Bluegirl, right now my scalp sores are better for whatever reason which I don’t know:) they really act like acne that wax and wane cyclically.

Started this combo today...and the dexamethosone mouth rinse. Told to swish 2 minutes, then spit. Then can I drink water to wash out that taste (and continuing saliva build up) or should I not rinse after swishing?

What monitoring does your DR do for Afinitor/Exemestane? Warnings for Afinitor are dire and it seems like the boost it gives to Exemestane do not last long. I only took Afinitor for about 1 1/2 months. The Radiologist Onc took me off while doing radiation because the literature was unclear about conflicts. My regular oncologist will probably insist that I resume when radiation is over. Thursday is the last day (Hooray!). The Rad Onc does not want me to do imaging until Aug, to let me recover from radiation. I guess blood work will help monitor kidneys, blood-sugar. But what about the lungs?

Tell me how you handled head sores. Itching and small bumps just starting.

NicoleRod I’m about through with my third cycle. I’m taking 10 mg and 25 mg aromosen.

Shortness of breath started about two weeks ago. Usually when I get in bed. It’s not debilitating but very noticeable.

In terms of digestion, I’m both nauseous and have what I call loose bowls. No diarrhea.

I’m taking prescription prilosec for the heartburn, which is pretty bad.

I don’t want to scare you. I’m still working and have a semi normal life.

M3 how long is a cycle 1 month?

It is weird. Afinitor in 28 day pack and Exemestane in 30 day bottle. The pharmacy saidd that is the way Afinitor is shipped.

Afinitor - what doses are people taking? I was on 10mg for Afinitor with Exemestane. During radiation, the Radiation DR asked me to stop Afinitor just before/during/and just after, because the literature was unclear on potential conflict with radiation. My oncologist wants me to resume ASAP. When I mentioned mouth sores and scalp sores, she said there was a mouthwash for the mouth sores, but for scalp sores she would lower the dose. But maybe even more confusing, liquid biopsy shows PDL-1. She said there was immunotherapy for that, Keytruda. And that if I started that, she would take me off the hormonal therapy. Does anyone know if there is a conflict or is just too many SEs if using both?

NicoleRod, scans show that Afinitor is not working for me, my liver tumors are growing slightly but enough for this treatment to be a fail. My hemoglobin was down which explains why I felt so bad. Looks like I’m going to get either Taxol or Gemzar next.

Also, there are traces of pneumomitis in my lungs.

I got a Unit of blood and have been off the treatment for a few days. I feel much better.