Afinitor/Aromasin
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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/
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Bluegirl...how long into taking the med did your mouth sores start? Do you put it in a capsuel? I do that was recommended in the FB group. I too may have to get radiation my spine mets are very very bad all of a sudden... where are the mets that you are radiating??
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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.
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Bluegirl...I just bought the L-Lysine supplement they say you wont get any sores while taking it...
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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
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Bluegirl...I just started it 3 days ago...I do the mouth rinse but I never remember to do it 4 times a day
. Is there a reason you are against the steroid mouth rinse? I mean you don't swallow it? I will keep you posted though 
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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).
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taking steroids orally is different from just rinsing with it...I get what your saying ...butbi had horrible mouth sores with ibrance 2 years ago and I would take anything to avoid that again
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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
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I was the one with the "bites" I never had anything on the scalp...
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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”
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figtree - I have been trying Calendula oil (from Marigolds) , recommended by the Radiation Oncologist to help skin recover from/during radiation. But so far, it does not seem to help with the scalp. But have only tried it for a week or so. It is so hard not to scratch/pick at them. Years ago when I was seeing a dermatologist for another issue, I mentioned occasional scalp sores (this was pre-cancer), she mentioned hat wearing can cause this for some people. I am usually wearing a hat to keep warm in winter or to protect head in summer. But those cleared up. These sores came on with Exemestane/Afinitor, and are still there even though I stopped Afinitor while doing radiation.
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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.
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What do your ALT and AST run on this med and what dose are you on? I just titrated up 2 weeks ago to only 5mg and my ALT is 87 and my AST is 67
I am afraid I wont be able to get to the 7.5 mg.....0 -
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?
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I personally wait like 15 minutes before eating or drinking anything.
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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?
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I'm about 3 months in on this treatment. Scans this week and results next week. In spite of my earlier post, I find this to be a difficult treatment. The fatigue, mild but constant nausea, shortness of breath,and insomnia are my worst side effects. And my word, WHAT is going on with my digestive system!?!
I got a scalp scrubber for the head sores. Seems to work pretty well.
Mouth sores didn't last long.
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Tell me how you handled head sores. Itching and small bumps just starting.
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M3..... When did the shortness of breath start (how long into the treatment) what dose are you on? What is your digestive issues...I have BAD Acid pain....and I am only on 5mg...
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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.
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In early March I started taking 10mg Afinitor and 25 mg Exemetsane. Experienced scalp sores and more frequent BMs (went from 1/day to 3-4, not diarrhea, no nausea). I have some shortness of breath, maybe a leftover of the pleural effusion in mid-march. The fatigue is probably from radiation. In late April stopped Afinitor for radiation. I'm sure my oncologist will want me to resume since last radiation was Thursday. I've been using Calendula recommended by Radiation oncologist for the burn, also trying it on the scalp, not sure it really helps the scalp. Trying to eat more yogurt, sour kraut, kimchi for the gut. Also turmeric (with black pepper). I've always eaten lots of yogurt, kraut and kimchi new to the diet. An acupuncturist gave me a list of foods she thought would be good for inflamation, a few of these have been in my diet for a long time: miso, aduki beans, barley, celery, kelp/seaweeds, sardines, alfalfa, grapes, anchoview, broad beans, almonds, mushrooms, daikon, garlic, onion, green tea, lemon peel, mustard leaf. Grapefuit and thyme also on list, but grapefruit seems to conflct with many drugs. And I think thyme as seasoning considered ok, but was told not to brew it up as tea - conflict with Afinintor? Sometimes I experience a dry cough a few times a day - is that also from the drugs?
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M3 how long is a cycle 1 month?
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NicoleRod, I think the pills come in a 28 day pack. No break in between.
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It is weird. Afinitor in 28 day pack and Exemestane in 30 day bottle. The pharmacy saidd that is the way Afinitor is shipped.
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M3 I take them out of the packs and put them in a capsule to help to avoid mouth sores...so I don't have the count by package...I just have a start date that I started. My stomach is getting worse and worse the longer I am taking it...so i am probably not going to last much longer
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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?
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BlueGirl...I have 10% PDL1 and have for the past 2 years...I think that is why I did so well on the Halaven chemo...it targets PDL1..and that is why I am doubting the Affinitor will even work for me.
So I started for 2 weeks at 2.5mg...then went to 5mg for 4 weeks and now for the past 2 days I am at 7.5mg..this is the highest we will go.What is your current dose now? I have bad BAD stomach issues and this is definitely gonna make it worse...but I have to say that Marshmellow Root Tea with fennel seeds also in there has been helping ..only problem ya cant take it when you take meds or supplements bc it coats the stomach and can prevent absorbtion of those...
How much % PDL1 do you have?
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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.
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M3 sorry you have to move on but glad you are feeling much better..how did you know about the Pneumonitis, did you have symptoms?
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