Afinitor/Aromasin
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NicoleRed - I was started at 10 mg Afinitor. Oncologist is concerned about my being off of it for 4 weeks for radiation, and wants me to resume ASAP. She mentioned a lower dose when I asked about scalp sores caused by Afinitor. I was not on it for very long, maybe 1 1/2 months. Since finding out a month ago that I showed PDL-1, she said Keytruda might be an option. I am ER+ (80%) and HER2 - . She also wants a CT ASAP, but I told her I wanted more time to heal from radiation, still quite burned. When I asked why AFinitor only seemed to be combined with Exemestane and not other AIs, she said it was because that is the way the study was done. But that I would quit both Exemestane and Afinitor if I started Keytruda. I do not know if there is a conflict with AIs and Keytruda.
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Bluegirl...I am not on Exe with Affinitor..I am on Faslodex with it... so there is something besides exe. Also I have not stopped Affinitor with my radiation (I am currently undergoing for the sacrum) both my RO and MO said it was fine to be on it.
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BlueGirl, ask MO about clobetasol solution for head sores.
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I have been on Afinitor since Mid December. I start With 10 mg with Aromasin for a couple of months and then switched to Faslodex when I had liver progression. It was ok initially but then I started getting this bad rash popping out here and there that I treated with eczema lotions, oatmeal baths and creams and steroid creams but it kept coming back. I lowered dose to 7.5 mg but that didn’t help. Meanwhile my bones started being painful especially my left leg, hip and pelvis and the pain became debilitating. Pain meds were also tricky and didn’t give much relief. I decided to do a week of radiation on a large portion of that area. The radiologist asked to stop Afinitor a week before, during and after the treatment. I was excited to stop it honestly because I wanted a break from the rash.
Unfortunately, the rash exploded and was completely out of control that I had to do a skin biopsy to exclude other concerns...my scalp was super itchy as well and I felt my hair will fall out! I tried three different high potent steroid creams but still. Now I’m on oral steroids for 16 days so hopefully that’ll take care of it.
I’m probably going to switch to my last option Navelbine.. I don’t have any more options left that I know of outside of recycling old drugs. Most clinical trials I don’t qualify for because I’m heavily pretreated and only phase 1 options are available at Emory where I get treated.
I’m writing this to give you all an account of my experience with Afinitor just in case it helps someone else. If you got a rash don’t ignore it!
Wishing you all on AA or AF a great smooth ride with great results for the longest time ever ❤️
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nopink - thank you for the suggestion, clobetsasol. I will ask. I assume is is Rx only? Also concerned that it is considered a strong steroid. One warning also caught my attention ".....Clobetasol foam may catch fire. Stay away from open fire, flames, and do not smoke while you are applying clobetasol foam, and for a short time afterward." Years and years ago, I did singe my very long hair when I got too close to a candle.
Nouzay - thank you for the warning, I will watch for a rash. Hard now because of raidation burns. Maybe another reason to hold off taking it at all. With the 2 SEs (mouth and scalp sores) I get very worried about other SEs, such as lungs, heart, blood sugar etc. A rash sounds very similar to mouth and scalp sores. But my DR seems to be one to want to hit cancer hard and fast with as much that can be tolerated.
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Does anyone have or had neuropathy from this?? I am having pins and needles feeling in my finger tips and feet and wondering if its that or if its from my mets at C7 & T3.....
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I was taking both of these together @night, but thought I read somewhere about Aromasin being hard on digestion. Thought I'd switch that to right after lunch or dinner. Maybe both then? Experiences &suggestions, please.
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I take in the middle of dinner
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Nicolerod, how is the Afinitor and Faslodex tx? Your monthly blood work holding steady?
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Sandi...my liver numbers look good dispite the pain I am having I am PRAYING its die off... but more than likely its a new tumor. My sugar is up it was 155 last check...I do take 500mg once a day metformin maybe she will raise it?
I just scaned C & T spine and Lumbar MRI today...Tuesday is PET & MRI liver...please pray its working on all mets... as you know I am on treatment 5 in 2 years...
havent had anything work for more than 4 months0 -
NR..this could be your magic combo! I think of you all the time..
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Sandi From your lips ...to Gods ears!!! you are so sweet really,.....you are! Thank you!
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NicolRod - I hope the new Tx kicks the cancer down the block and that you have found the drug that works for you. Hugs.
NoPink - I take the meds with breakfast and do not seem to experience any indigestion. But everyone is different. I take Exemestane as well, which says to take with food.
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Thanks Blue girl!!!!
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hi ladies. So I just started on Everolimus / Afinitor 7.5 mg once a day. I started Friday. In combo with faslodex. Dr started me on this due to liver Mets. I’m hoping it takes them away. Any SE you ladies experience. But I am about to get if everolimus for 10 days due to ill be starting whole brain radiation on Monday. Hugs ladies.
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Hopfull2 - ask your DR about radiation and Afinitor. I recently finished 18 rounds of radiation, and the DR thought the literature was unclear about conflict with radiation, and had me stop Afinitor during treatment. I was on 10 mg prior, and experienced a very bad mouth sore and scalp sores ( thought they were flea bites, yes the dog and cat sleep on the bed). After radiation the oncologist lowered the dose to 7.5 mg. It has only been 6 weeks since restarting, but no mouth sore or scalp sores so far. There is a mouth wash for the mouth sores, but hopefully I won't need it.
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thanks blue girl, I emailed MO today he said yes. He wants me to stop. I’m currently on the 7.5 dose too. But I think I might ask for the rinse. Just to have it in cas
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I was told to use the steroid mouth rinse as preventative at the start, then wean off. After 1 month, had to reduce Afinitor dosage from 7.5 to 5mg due to fatigue &nausea. Better now, but after 1 month at 5mg, developed a mouth sore so back to swishing. I take Aromosin after lunch and Afinitor before bed. Seems to work, as I have other drugs too and couldn't do all at once or got upset stomach.
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I’m bss as ok on afinitor. I take at night. So far so good considering all other stuff I need to go through. God bless u la
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Good results! I'm starting my 2nd month on lower dosage of A/A. Took a week or so to adjust, but now I really have nothing but the typical fatigue. Scans in a month, hope it is effective, as this is very tolerable.
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no pink- so happy you are tolerating it. Tho this is a quiet thread a few more people have said they are starting this treatment soon. My fatigue went away after a Few Months.
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Has any one experienced scalp sores with everolimus/afinitor ? I am positive it is the everolimus because the sores went away when the radiation Onc had me quite taking it during radiation. They came back about 1 1/2 months later when I resumed. Also a new development is the swelling of one leg, that is getting better with elevation and a compression stocking. Vaginal dryness/irritation as well.
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BGRS-i am trying to think back since it has been 1.5 years since I was on this medication. I did have mild random scalp sores, I think I got a yeast infection or two and used OTC cream - didn't go to dr just assumed based on symptoms. I think that I did have Flintstone feet which were improved with elevation and in the morning. Not one leg or foot though.
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I asked MO for Rx for clobetasol solution for scalp sores, clear liquid. Still use couple of times a week before bed. Bumps & itching reduce a lot.
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Thanks for the suggestion NoPink. Were your sores caused by or suspected by meds?
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Suspected from aromosin or afinitor. But I had used it years before for head sores also. Clear liquid and doesn't require washing out to style your hair again.
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Hello. I will be starting A/A on Monday. It is my last oral med before chemo so I am trying it. Any suggestions? My oncologist spent a lot of time with me today discussing side effects and how to prevent/deal with them. She made sure I have all the meds I need just in case and that I know when to call her, etc. I tolerated Ibrance/Femara very well for five years so we are hoping this does as well for me. This seems to be a quiet thread but I recognized a couple of you. Hope you are all doing well. Chris
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IntoLight - find out if there are any concerns with chemo/Afinitor. If radiation is in the plan, Radiation Onc might want to suspend during treatment, mine did. I think the slight increase in BP for me is the Everolimus. SEs mention increased cholesterol and blood sugar as well. The regular blood work should catch the sugar, I need to remember to ask about cholesteral
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BlueGirlRed, my onc told me higher BP, sugar and cholesterol were common side effects. Radiation is not in the plans right now. We are just going to scan early and see how I do.
I do have a question though: it looks like my copay for AA will be about $2500.00. Is that the norm here? Anyone find a way around it? I am on Medicare so I can't qualify for copay assistance as you have to be private pay.
Thanks.
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IntoLight -don't have an answer about Co-Pay. I have private now and when I become eligible for Medicare will keep private as well. Initially my co-pay was $50/28 days. I hit catostrophic with my health insurance this year, so for now, no co-pay or deductible until the new year. One thing that was strange. Initially I was on 10mg, the box clearly labeled "Afinitor" suggesting the brand name, brand name is usually more expensive. MO reduced it to 7.5 mg. It comes in a larger box marked Everolimus, suggesting generic. Probably insurance reviewed things and made it generic.
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