Itching on Ibrance; Dermatologist Out of Ideas

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TarheelMichelle
TarheelMichelle Member Posts: 871
edited June 2018 in Managing Side Effects of Breast Cancer and Its Treatment

I need help with eczema that is worsened by Ibrance. It’s a rare side effect. I have sensitive skin anyway, coming from a Scotch-Irish background. I’ve had skin issues my whole life. I’m responding well to Ibrance and want to stay on it. I’m hoping that other people with sensitive skin might have suggestions. My dermatologist has prescribed several things but nothing is helping.

The symptoms are terrible itching on arms and legs — painful burning and skin peeling so badly that wearing clothing is painful. Winter is worse, because leggings/tights/workout pants rub and irritate my skin.

I had this side effect on Afinitor, and to a lesser extent, letrozole.

I am on opiates for pain relief. Opiates cause histamine relief, which aggravates the itching. I’ve cut my pain meds in half to see if that would help the itching. (A little.)

I don’t do well on oral steroids, so that’s not an option. (I want to kill everyone, not selectively.) Topical steroids provide some relief.

My monthly Ibrance cycle also corresponds to a worsening of eczema. First week is itch-free. I use lotion liberally, occasional use a topical steroid prescribed by my doctor, and try to stay hydrated. Even on this “itch-free” week, I’m unable to shower every day, even without using any soap. I occasionally take this week off from antihistamines.

Week 2 the itching starts, usually my legs. I have to avoid wearing synthetics because my skin hurts worse. Not able to shower, because afterward my skin hurts. I take Epsom salt baths every 3-4 days. I take Claritin every day, even before the itching starts.

Week 3, I have to take 2 Claritin a day because the itching worsens. I also use hydrocortisone and Benadryl ointments and creams on my arms and legs 2-4x a day. Usually around day 17-18 of Ibrance, my skin totally breaks down, and itching is unbearable. I’m taking 2 Claritin every 12 hour, plus 4 Benadryl just so that I can dress. I’m in tears wearing pants, even cotton ones, because it rubs against my skin. It hurts to walk, the skin on the back of my legs in particular is red and raw. My skin starts peeling and my black clothes look white because of all the dead skin.

My skin usually returns to normal around Day 1 of the next Ibrance round. Even during my week off, the itching and skin irritation is bad. Nothing topical seems to have much effect.

This month, my dermatologist started me on Singulair, because some people with eczema have reported relief. I was hopeful, but have had to take Claritin to supplement in the past 3-4 days, and I’m not even in week 3.

I hate all of this medicine almost as bad as the itching. Other remedies I’ve tried are applying pure aloe to the skin, aspirin, avoiding caffeine. These help some.

I don’t want to stop the Ibrance, if I can help it. Any suggestions to help calm downmy skin?

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Comments

  • Lula73
    Lula73 Member Posts: 1,824
    edited April 2018

    Believe it or not, but Vagisil cream might help. It's 20% benzocaine, so it will numb the itch. It has some extra moisturizers in it too. Obviously originally developed for something different, but many of us BC warriors use it for nerve regeneration pain, scar itching, etc. relieves the itch in seconds. But I'm not sure about putting benzocaine over roughly 1/2 your body at one time. I would definitely check to make sure it's ok and there's not anything that will react with anything you're currently taking. Good luck to you!

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  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited April 2018

    I have a secondary form of eczema on my hands. What dermatologist rx doesn’t help me either. I found a sunburn gel at Walmart that has lidocaine and aloe in it. Numbs the itch. Aspercream OTC has a lotion with 4% lidocaine that works well too.

    During rads I itched a lot, RO approved me using the sunburn gel.

    Look at the National Exzema Foundation site for more tips.

    Good wishes, it’s miserable.


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  • TarheelMichelle
    TarheelMichelle Member Posts: 871
    edited April 2018

    Thank you for your suggestions. :-

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  • Lula73
    Lula73 Member Posts: 1,824
    edited April 2018

    TarheelMichelle- where are you in NC? I’m in the Greensboroarea!

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  • TarheelMichelle
    TarheelMichelle Member Posts: 871
    edited April 2018

    lula, we are neighbors. I’m in Winston-Salem and used to live in GSO.

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited April 2018

    Hi Tarheels, I checked on the metabolism of Ibrance at dailymed "In vitro studies with human hepatocytes, liver cytosolic and S9 fractions, and recombinant SULT enzymes indicated that CYP3A and SULT2A1 are mainly involved in the metabolism of palbociclib."

    Try and get the dermatologist to have the CYP 3A4 and 3A5 checked. They are part of the Cytochrome P450 liver metabolism.enzyme pathways. Both can have abnormalities. An intermedite metabolizer on 3A4 can mean drug dosages need to be reduced.

    I have no idea if there is a patient test for the Sult enzymes. New tests are being developed all the time.

    My experience with getting enzymes tested is with Genelex, but they're other companies out there. Without insurance the cost can be prohibitive. 50% of all drugs go through the CYP3A's. If you have a history of unusual response to many meds or know by history that you need the lowest or even the pediatric dose of many meds, it's a clue that they may be abnormal.


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  • TarheelMichelle
    TarheelMichelle Member Posts: 871
    edited June 2018

    Sas-schatzi, You are so helpful, as always. Thank you so much. I'm going to talk to my dermatologist AND my oncologist at MSKCC about this. They've done numerous tests and may be able to order tests more easily than my local derm.

    I have made two minor changes that have helped immensely, and I am sharing in case other people are suffering. I take the daily Singulair in the morning at least an hour before my pain medicine. This makes a huge difference in the morning itches. Second, I've taken two-week breaks on Ibrance instead of one-week. I'm still just as itchy today, on my 14th day of no Ibrance, so unsure of how Ibrance affects the itch. But the singulair, combined with an occasional otc antihistamine, has definitely helped. Hoping next week’s scan will show continuing good results.

    And now, my hair is falling out, again. Breast cancer Whack-A-Mole.

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited June 2018

    Hi Tarheel, thanks. Consider YouScript drug checker. It's 30$ a year, but worth it's weight in gold. If you want. We could do a phone call and I could plug your drugs in and look at them and we can discuss them at the same time. :) PM if you want to give this a try.

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