Afinitor/Aromasin
Comments
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For women who get scalp rashes do not scratch it that's my advise. I kept picking it and picking it. It got so infected that I had to get it cut to remove all the puss and than get it stitched up. That was really scary my onc got so scared when he seen it he had to biopsy it to make sure it was not skin mets. That whole area was red and a it turned into a huge bump. Oh I also was put in antibiotics. But I am good know thank god.
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oh my stellar, must have been frightening. Well, I started with a skin rash on both sides of my arm yesterday and under one arm as well 16 days into 10ml. A/A combo
I am using cortisone 1%, it's not itching though. My throat seems scratchy on one side, same side as underarm rash. I'm doing the salt gargle thing with biotene mois. mouth wash. Suggestions?0 -
naturegirl2 - I had the itchy rash on arms and legs after 11 days on this combo. I called the oncos office and they said to stop the Afinitor and if it did not get better to call them, it got worse over the weekend, so I called them Monday and they prescribed a steroid and I have to go see my doctor tomorrow to see what he wants to do, whether to continue, lower the dose or move on to something else. I think it is always a good idea to call the doctor just to let them know what they think you should do.
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I had an itchy rash when I first started A/A in Dec, and was taken off meds for 2 weeks when I developed bad mouth sores. Started again on 10 mg.,, mouth sores again, stopped for 2 weeks then went on 7.5 mg. I never got the rash again, but still have mouth sores. I think I'm just managing them better.
My dermatologist told me if I got a scalp rash she could prescribe a steroid in a foam. Just an idea, I haven't need it yet.
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thanks for the advice Stella.....I find myself picking at the scalp rash.......
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A crazy suggestion for everyone who is itching: I have one of those big old claw-foot tubs and about once a week I fill it with warm/hot water and put in a generous amount of castor oil (I buy on Amazon but saw at Walmart) and soak in it. I even put my head under up to my face and just let everything soak. No soap, just water and the oil. If I'm not going anywhere the next day, I don't even wash my hair out and it really softens it. Truly, I hardly ever itch. Boy, be careful getting out of the tub though. That stuff is thick! (The bottle says it's an anti-inflammatory and has been used for thousands of years). And immediately scrub out at least the bottom of the tub or the next person in will be in for a surprise!
While I'm sharing my crazy ideas, I wrote about using fake nails for my fingernails a couple months ago and I'm still wearing them. The kind that you buy as a package at a grocery store and you glue on. They haven't damaged my own nails at all - they probably have helped them. I don't even wear them for aesthetics anymore as my nails break like crazy and hurt if I don't have the fake ones on. They come off naturally about a week later.
Hope this helps someone, have a good day all!
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Thanks everyone! I just called my oncol. pharmacist and she's getting a message over to my oncologist. She said they will probably give me a stronger strength cortisone cream. So I'm waiting to hear back from my oncologist. The rash does not itch though, thankfully. Will keep you posted.
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I lost a lot of weight on a/a treatment. I just want to know if any of you lost weight and how much weight??? I don't know why I am losing instead of gaining. I eat all day long. I am scared to look at the scale at times.
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Just got the call from my oncol. He said for me to stop Afinitor now thru the weekend and to call him on Monday to see if the rash has gone away. I forgot to ask him if I should continue with Aromosin. Did anyone continue on the Aromosin without taking Afinitor when getting off due to rash? The rash is not itching and I'm wondering if I should just bite the bullet and stay on this. It is looking a tad better today. I'm not having mouth sores, thankfully. What do y'all think?
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Pretty much I'd do what the dr. said to do - we are not medical professionals. Think you should stay on the Aromasin unless he said not to. S.
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Thanks. I decided to stay on both meds. as I don't think my rash is that bad. It looks a tad better today. As much as I would like not to take this combo, I think I need to see the full picture in the meds. destroying the cancer inside of me. So I'll tough this SE out. I have blood work next Wed. and the following week I see my oncol.
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My onc just prescribed a new mouthwash that has cleared up my mouth ulcers in less than two days. She just learned about it at a conference. It's Dexamethasone Elixer. Some magic mouthwash recipes already include it. It's a coticosteroid.
Talk to your dactor and see if it might help. I recommend it highly!
It's expensive ($50) and not covered for me, but worth every penny.
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Help! I have nasal sores that are driving me crazy (I'm on 7.5 mgs Afinitor) - I am using vaseline but is there something else I should be using - onc isn't very forthcoming re se's and PCP appointment isn't for two more weeks - any suggestions would be welcome.
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Sandy,
My onc suggested vaseline & saline spray to keep your nasal tissues moist. It's helped me as I get lots of mild nose bleeds.
Terri
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hangnails.......very dry skin and brittle nails.....and painful hangnails...on every finger! Any solutions? Ready to wrap every finger! Also, my neck is looking like I'm 80....dry and very wrinkled....and dis colored from the radiation. Hair is thinning too.......just feeling yucky and old.
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Terri - thank you so much, I used to use saline spray and forgot to get a refill - that'll do the trick I think - I have had a miserable couple of days thanks for rescuing me.
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Romansma - I am using cuticle oil quite successfully it moisturizes the hangnails - I rub it in at night while I am TV watching and wear those white gloves you can get at the drugstore I also wear nailpolish at all times - I remove it with a non-acetone remover and also I keep my nails very short so they don't catch on anything. Hope this helps. S.
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Thanks Sandy....I will try that. Think my husband will have to do all the dishes too.....drs orders!
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Laura, what is a "generous amount" of castor oil? A couple of tablespoons or a cup? Does it take away the itch?
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I've been feeling a little off for a few days now. Very achey in my shoulder area, weak.....almost like that feeling right before you get the flu.....,but no flu, just weak and achey. None else have this on Afinitor?
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Romansma - I felt fluey when I first started five weeks ago and indeed did get some kind of URI that only lasted a few days but now that I am up to 7.5 mgs I feel weak and shaky every couple of days - I have had pretty low bp because of new meds they put me on because AA spikes bp but now even when my bp is normal or above I have days (like today) when I can barely stay on my feet - hope this combo is working because I am hating having to curtail my errand running, etc. I also feel like my onc is not helping me fight se's, just taking notes and nodding - I see my PCP next week and will hopefully get some help with se's. The shoulder aching you're having may be nothing but if you're short of breath get in and get a chest x-ray, the lung problems on this combo can be dangerous.
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Thanks Sandy. Saw my MO today before my Xgeva shot. WBC is headed downward...at 2.2 today. Could be a virus but no other symptoms yet. I was on AA about a month ago and had to take a break for severe throat sores, but I don't remember this weak, achey feeling that I have now. It could be the effects of the radiation now combining with the Afinitor. Just need to watch and see, but, yes, it's in the back of my mind that the achey shoulders could be a sign of the lung issues. I guess more signs will show up if that is the case.
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Hi DanishGirl - I'd say maybe a 1/2 cup. It really does take away the itch, at least for me. I've become quite dependent on it, I take a bath about once a week and soak for awhile. I'm curious to see if I'll be able to handle it in the summer (I don't have air conditioning) as it is thick stuff on your skin - if I'm lucky enough to still be on Afinitor.
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Sandy- A&A really jacks up my BP. It used to be 130/78 Am reading on losartan 50mg and maxide. Now there are days when it's 152/88 Am reading before I take the bp meds and diuretic. I have increased swelling in my feet and ankles. This combo has given me a cough in the morning and achy feeling. The aching and hip pain, I think is aromasin. I just get tired easily. I can nap on a dime. AI's have always made me achy. No more mouth sores I am grateful for that! Dry mouth and a soapy/ tin foil taste bothers me a lot. Gum helps a bit. Still having break outs at 55.
We finally got some sunny weather and spring like temps.. this has been the wettest cloudy winter. The sun makes everything better.
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Oh yes, Rosevalley - just loving the acne - haven't had any in 50 years but I sure do now. Are you on 10 mgs. or 7.5 - onc. wants me to go to 10 mgs. but I'm thinking that's not going to happen - we also are finally having nice spring weather - it's been a looooooong winter.
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Sandy208- I take 10mg every other day. Yes the acne sucks at age 55. I usually have dry skin.. what the heck? My kids don't have this issue.. all girls 13, 18, 20. No Mom gets the zits, cancer is very humbling. Do you have any swelling in your hands, feet and ankles?
As far as increasing to every day, my onc said his experience is that folks don't tolerate it at 10mg every day. He goes with what they can tolerate. I appreciate that. I think if the mouth sores had continued that would be difficult, but I had three and so far no more. It must be working because my anemia has improved, platelets up and hemoglobin up to 10+. I have been gone for a month and have an apt friday. That should include labs, if the numbers stay, then I would think I will just keep with the 10mg every other day. As long as the labs stay solid, I am fine with that. I think all the other side effects, we just have to put up with it.
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Rosevalley - Onc has me on 7.5 every day - I know that unless I plan to be bedridden I can't take anymore - I am increasingly weak and unable to do anything except shower and get dressed - maybe one chore if I rest but that's it. As for swelling - well, it's interesting I have neuropathy (from chemo 6 years ago) and it flares up now at night and honestly it makes me feel like I am swollen but I am not - I've been seeing the onc every two weeks and having blood taken at that time - I have been told my blood tests are "just fine" I haven't asked to see the results but maybe I should because something isn't right or maybe something is right and the a/a is doing its job!
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Hi All! I've been on the A/A combo since Sept 13, Afinitor @ 10mg. I did get a short break after developing pneumonitis in Dec. The worst side effects are the toxic, caustic, cystic acne all over my face and scalp. And feeling like the "Tin Man". Other minor irritations are the mild, but daily nosebleeds and tissue paper thin fingernails. However, my tumor markers have consistently been climbing each month. The cancer on my bones is spreading, now to my rib and skull as well. But my lung tumor remains stable. I see Doc on Monday for Zometa infusion. I am curious what he will have to say.
I am also doing a couple of alternative therapies...tons of supplements, coffee enemas and infra red saunas to detox the body.
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Hi Skylotus, I'll be curious too, to see what your doctor says. Keep us posted. The side effects to A/A can be a real pain at times. Wishing you a relaxing and fun weekend!
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Oh yes, the bloody se's - today I found out that my blood sugar is at pre-diabetic level - it was a random test tho not an A1C but I am somewhat ticked off - it has doubled in the last two weeks - before that I had normal blood sugar - already warned my onc that if this goes to diabetes I won't take anymore Afinitor - why give yourself a co-morbidity - seriously there is something to quality of life - I am extremely weak and shaky these days and they can't seem to find the cause but everyone suggests yoga and meditation - really!!!!
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