Affinitor and itching: Hi, I'm on 5 mg... - SHARE Metastatic ...

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Affinitor and itching

suzesunshine profile image
11 Replies

Hi,

I'm on 5 mg. of Affinitor (7.5 was too strong for me) and I had dry patches and itching.

Has anyone else experienced that? I take Benadryl every day. Any suggestions?

Thanks.

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suzesunshine profile image
suzesunshine
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11 Replies
PJBinMI profile image
PJBinMI

Hi, I have not been on Afinitor, but I did have itchy patches of skin when on Ibrance. I saw a dermatologist who recommended Sarna lotion, the Sensitive Anti-Itch formula. It is OTC but I had to have the pharmacist order it for me. Dermatologist also prescribed a very large dose, 10 mg twice a day, of Xyzal before it became OTC and it took a long time to actually obtain that as both the insurance company and the pharmacy balked at such a large dose. It helped some.

I have had hay fever like allergies most of my life and earlier in this cancer journey I had developed a bad itchy spotty rash. My pcp thought it was eczema. The dermatologist disagreed and prescribed a different anti-histamine, I forget which one. That helped quite a bit.

I've learned quite a lot over the years about allergic rashes and sensitive skin. I use only fragrance free laundry products-All Free and Clear and Downy Free and gentle and I put my laundry through 3 rinse cycles, which means doing an extra 2 cycle run without detergent, with my machines. I use hypo-allergenic face and body wash.

When I have an outbreak of itchy rash, I don't hesitate to take Benedryl two at a time! Several years ago, I had a major sudden on set rash that I went to the ER for, after taking two Benedryl at home. (My husband drove!) They gave me two more at the ER, so I figure that for me, I could take four of them for something major if I needed to, but would go to the ER if I had to do that. I also got epi-pens, just a couple of weeks before there was alot in the news about the importance of having them, and a big price jump! My husband got an Rx for epi=pen, too and I carry one in my purse and he has one in his truck. (He has major allergies to penicillin and shell fish.)

If I were in your shoes, I would call my onc's office and talk with a nurse about the itchy skin. I hope this itchiness will be short lived for you. It is really hard to live with!

Hope some of this is helpful.

Kats2 profile image
Kats2

Hi suzesunshine,

I'm also on Afinitor with Aromasin. In my literature, it says that Afinitor comes in only two dosages, 5 mgs and 10 mgs. Were you really put on 7.5??? I'm curious about this. I went from 5 mgs to 10 mgs and so far I've been doing okay with it.

I'm noticing dry areas on my right palm and the bottom of my right foot. I'm using Aquafore cream and also Vitamin A+D cream on these spots. I don't have any itching. I'm wondering if these dry areas are from the Xeloda that I was on previously. I started Afinitor on Aug1.

Is the itching really bad? Perhaps if you get the right cream you'll be alright. I know that an Anti Itch cream is sold OTC.

Good luck with everything! Kats2

suzesunshine profile image
suzesunshine in reply to Kats2

Hi Kats,

I was on 7.5 mg. but my mouth sores were really bad, so he put me on 5 mg.

Mouth sores are good now, but I think the itching is an allergic reaction. I'm gonna try Clariton to see if that works. I'm happy that Affinitor is working for you.

Thanks, Suze

MaryJ-S profile image
MaryJ-S in reply to Kats2

I am on Afinitor and have itchy skin. I went to a dermatologist and got some cream that is stronger than the over the counter allergy and itchy cream. It helps but I thought my skin was just getting more sensitive as I was getting older. Nice to know it's not in my head, tho. I am on alternating days 5 mg and 7.5mg due to mouth sores. It's been better although my tumor markers have been going up since January. No sign on a scan yet so we are staying with it unless there is a major jump in numbers. I have been on Afinitor and Letrozole for 3 years in Oct. So much easier than regular chemo.

suzesunshine profile image
suzesunshine in reply to MaryJ-S

Hi Mary J,

Thats good to know. I was thinking of going to the derm. I also had mouth sores (on 7.5) so now I have 5 mg. Doing much better, but my markers jumped also. Just had a scan and doc said everything is stable. No new areas, so we are staying on the Affinitor and Exestame for now. I'm happy they have drugs like this. It's so much better than chemo drip. :)

MaryJ-S profile image
MaryJ-S in reply to suzesunshine

I totally agree! Happy days most of the time!

ChrisVict profile image
ChrisVict in reply to MaryJ-S

I was just given this treatment my 3rd line and I am hopeful. Very scared of side effects. I hope I have a long run 3 years that’s wonderful!

Kats2 profile image
Kats2

suzesunshine,

Does Afinitor come in a 7.5 mg pill? Kats2

suzesunshine profile image
suzesunshine in reply to Kats2

Yes

daf10 profile image
daf10

one of our volunteers here at SHARE had a similar experience from taking on Afinitor She was told to use Calmoseptine It can be purchased over the counter It is very similar to calamine lotion which stops itching. She also said that using any moisturizing cream/topical lotion was very helpful as well. Dermatologist recommended Sarna which is expensive but something like goldbond or ceraphil will also do the trick.

suzesunshine profile image
suzesunshine

Thank you! :)

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