spotty rash with Herceptin

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Lakonia
Lakonia Member Posts: 29

I'm about halfway through my course of Herceptin - I've just had No. 8 and have had few side effects - just runny nose, stiff joints and muscles.

But following No. 8 last week I've developed a nasty spotty rash which apparently can be a side effect. The information sheet does say that any side effects can develop at any time during Herceptin.

Has anyone else had spots/rash with Herceptin and if so how long did it take to go. Is there anything I can use to make it go?
thanks

Lakonia

Comments

  • Serina
    Serina Member Posts: 6
    edited November 2007

    I just had my 9th Herceptin treatment on Oct.25/07.  I've gotten a spotty itchy rash in my ankles, knees and inner legs right from day 1.   The last treatment (9th) is my first time not getting the rash, so I'm hoping that side effect has passed.  I got a prescription cream from my Oncologist for the rash.

  • Lakonia
    Lakonia Member Posts: 29
    edited November 2007

    Thanks for your reply Serina.  Let's hope that this side effect has passed for you.

    Best wishes

    Lakonia

  • janie44
    janie44 Member Posts: 1,460
    edited November 2007

    Hi,

    I finished 52 Herceptin infusions a couple of years ago.  Taxol caused me to have a spotty itchy rash which continued with each Herceptin infusion for a good while and finally began to dissipate.  I cannot remember how many but it was quite a while.  I used Benedyrl tablets and topical cream.  Good luck ladies.  Janie

  • Lakonia
    Lakonia Member Posts: 29
    edited November 2007

    Hi Janie and thanks for your reply.

    Take care

    Lakonia

  • SANDER2
    SANDER2 Member Posts: 13
    edited November 2007

    Hi! I am looking for some advice - I had eight doses of herceptin, once per week with taxol every other week. My Dr. thinks that herceptin is the culprit for my itching. I didn't break out in a rash (possibly hives) until week 2 of herceptin. I took taxol w/herceptin the first week. It started out as a rash then turned in to a severe rash. I was given steroid pills (prednisone) to treat it. The severe rash/hives? was gone in a couple of days but the itching never stopped. Some days were worse than others. The first 3-4 weeks, the itching was irregular but irritating! Then the itching got worse. I had to take 2-3 baths per day just to find instant relief from the frequent itching. I went to see a dermatologist who indicated that I had "dermagraphism" I believe is what it was labeled. It's a form of hives. Once I stopped taking herceptin, the itching/rash was gone within 2 weeks. I don't know if I will resume taking herceptin or not. My Dr. indicates that there are no comparison studies that have been done that indicate whether 8 weeks of herceptin or 52 weeks makes a difference with long term survival. I was discouraged to hear that there isn't any research to help me make a better decision whether to continue w/herceptin or not. If you have any medical knowledge or first hand experience, please respond. I have a couple of months to decide if I am going to try taking herceptin again. Right now, I am taking cytoxin/adriamyacin  (chemo drug) only. Thanks!  --- Shawna

  • SANDER2
    SANDER2 Member Posts: 13
    edited November 2007

    Lakonia - you indicated that you are half done with herceptin. How many doses will you have of herceptin? I am just curious. My Dr. is recommending 52 weeks of herceptin for me.  --- Shawna

  • SANDER2
    SANDER2 Member Posts: 13
    edited November 2007

    Glad to hear that you have had a better outcome since your 9th treatment with herceptin. I made it to week 8 of herceptin before I stopped taking it. I had surgery (mastectomy) then started my 2nd round of chemo so I don't know yet if I will resume taking herceptin once I am done with my 2nd round of chemo. Are things still going well for you? How many doses of herceptin will you take? Have you had to use any anti-itch meds other than an ointment? Benadryl made me too tired so I tried taking something else (atarax and generic benadryl) but I didn't have much itching relief with either of these.

  • Lakonia
    Lakonia Member Posts: 29
    edited November 2007

    Hello Shawna.  Your rash sounds awful.  In fact the rash I've had with Herceptin wasn't itchy - it just looked horrible. Most of it has gone now but I have to go to the hospital for another dose of Herceptin tomorrow so we'll see if it comes back.

    Your rash sounds very much like the one I had with Taxotere which I had by itself before Herceptin.  My Taxotere rash was extremely itchy and unsightly.  Piriton helped with that one.

    I'm in the UK and here most people with primary breast cancer have Herceptin every 3 weeks for a year.  However I believe the doctors don't actually know what is the best length of time to take it for - it's too new and as you say there are no studies yet.

    Best wishes

    Lakonia

  • SANDER2
    SANDER2 Member Posts: 13
    edited November 2007

    Lakonia - good luck with your herceptin treatment tomorrow. How many doses of herceptin have you had now? My oncologist doesn't think it would be a good idea to give me a larger dose of herceptin every three weeks b/c of the severe itching that I have had. That's why I was taking a smaller dose weekly up til I had surgery. Do you know what Piriton is, is it a steroid by chance? Just curious before I talk to my Dr. about it. It's so hard to know whether the itching/rash would get better or worse the longer that I take herceptin - my oncologist has said the same thing! I will keep in touch with you to see how you are doing with your herceptin treatment. Are you taking any other chemo drugs right now or just herceptin? Thanks for your reply! I will touch base with you soon.

    God Bless - Shawna 

  • Lakonia
    Lakonia Member Posts: 29
    edited November 2007

    Hello Shawna

    Piriton is an anti allergy drug - I think it's an anti histamine, and in the UK Piriton tablets can be bought over the counter. I was also given Piriton intravenously at the hospital when I had Taxotere as I reacted badly to the first infusion.

    I'm also taking Aromasin - my cancer was triple positive.  I'm reasonably OK on the Aromasin apart from dreadful hot flushes and sweats.

    Back from the hospital and shall probably  have an early night - I always feel quite tired after Herceptin.

    Take care

    Lakonia

  • pgebe29
    pgebe29 Member Posts: 11
    edited November 2007

    I have a spotty rash all over my hands.  My ono says it looks like contact derm, but I don't thinks so, I think it is from the drugs(I'm on taxol and herceptin).  Went to a derm. dr. and he doesn't know what it is so he did a biopsy.  It looks really nasty, if as my skin has been in too much heat and my skin is looking very wrinkly.  Any idea how to get rid of it.  I will be on a new treatment of herceptin only every 3 weeks til Sept 08 in Dec.

    thanks,

    Pat

  • Lakonia
    Lakonia Member Posts: 29
    edited November 2007

    Hello Pat.  This sounds like the rash I had on Taxotere which was horrible.  I was told to use anti histamines and Piriton did help somewhat, plus I used some anti histamime cream to help with the itching.  It went away - after about a week - possibly just because  the drug was leaving my body anyway - I'm not sure.  When did  you have your last treatment?

    Take care

    Lakonia

  • pgebe29
    pgebe29 Member Posts: 11
    edited November 2007

    Hi Lakonia-I had my last treatment last Wed, will have another tomorrow.  I am fortunate that it does not itch.  I think I have it on my eyelids too.  I wear makeup when I am out so it is not noticable, but I need to show it to the derm dr next week when I get the results of the biopsy that is to tell me what it is.  It is just unsitely because it is right on my hands.  I have been putting honey moisturizer on it which makes it feel softer.  The cortisone cream did not work and I get steroids and benadryl with my treatment.  I think I am just going to have to live with it til the treatment is over in Sept.

    Thanks,

    Pat

  • Lakonia
    Lakonia Member Posts: 29
    edited November 2007

    Hi Pat

    Good luck with your treatment tomorrow. Let's hope the rash goes away when you finish the Taxol.  If it is the Herceptin causing it then hopefully it will stop doing so, as it did for Janie and Serina (in the comments above).

    Best wishes

    Lakonia

  • miss-di
    miss-di Member Posts: 161
    edited December 2007

    I got spotty itchy rash last month after my Herceptin. neck area.  Dr. had it biopsied, came back as "a reaction to the Herceptin or a reaction to the cancer."  it's back again, bigger with this last treatment.  Driving me crazy, but I've always been a tad crazy anyway.

    I hope it goes away with time like some of yours as I will be on Herceptin until I can't take it anymore.

    My best to all,

    Di

  • annarborkendra
    annarborkendra Member Posts: 1
    edited May 2009

    I have had a spotty itchy rash for two weeks now, I am 10 months into my herceptin treatment...

  • eagle
    eagle Member Posts: 5
    edited July 2009

    I am scheduled for 52wks.of Herceptin.These are done weekly. I take  1 Benadryl & 2tylenol before tx. when I leave home for my tx.this is per.doc.instructions.Cuts down the time I am there,so they don't have to run through my port.I should have last tx.1st.wk.in Nov.Never had a problem until last week.About 6hrs.after tx.palms of my hands started itching,then my hips.I broke out in whelps all around my hips,inside my upper legs and across stomach.Called my onc.doc.they called in a script of medrol dose pak.(prednisone)cleared up by next day.Tomorrow I am scheduled for a double dose tx.because of going out of town for two weeks.Hoping I won't have any reaction.My onc.doc would not give Herceptin along with any chemo.and I wonder why some do.I had 8mos.of chemo.& 33 radiation tx.The only other time I had a severe reaction of this nature was from Celebrax and my throat almost closed up by the time I got medical help.At least now I know what reaction signs to watch out for.Herceptin is a wonderful drug for those of us with the HER-2 factor so I am willling to take my chances.Good luck to all you breast cancer survivors.

  • 07rescue
    07rescue Member Posts: 168
    edited July 2009

    I get a nasty, itchy rash all over if I get the large, three week coverage dose of Herceptin, and no amount of steroids and Benedryl stops it. But if I get the lower dose of Herceptin on a weekly basis the itching is barely noticeable and I don't have to take anything for it, and it goes away after a day or two. I much prefer getting the weekly low dose, even though it is more trouble to get to the cancer center every week for it. It's worth the trouble to me.

  • Cal-Gal
    Cal-Gal Member Posts: 30
    edited July 2009

    Tomorrow I have my 6th of 52 Herceptin treatments--and this week I developed a rash on my face--yuk---

  • PatriciaPrins
    PatriciaPrins Member Posts: 1
    edited July 2009

    I live in South Africa and have had 17 Herceptin treatments, one more to go.  I have had a rash, pimply rash, mostly on my legs and arms.  Reading these commemts have helped as the Onco was not sure.  Thought it could also be the Tamoxifen, but having read this, think is sounds like the Herceptin, will see when I am finished.  How many Herceptin treatments are recommend in your part of the world.  Here in SA we are given 9 or 18 treatments. 

  • pacinodj
    pacinodj Member Posts: 1
    edited October 2009

    Hi Eagle,

    I ended a 52 week course of Herceptin mid-July of 2008.  In August 2008 I developed a severe "hive-like" rash on both legs, starting just at the ankles, back and sides, and even worse on the inside of my thighs almost up to my groin.  I was referred to a dermatologist who diagnosed "contact dermatitis" and gave me an RX for prednisone and triamacinolone acetonide 0.5% cream for relief.   After a few weeks it subsided.  During the first week of October 2009 the rash came back 20 times worse -- most in the same area, but now also on my forearms.  My primary care dtr. prescribed prednisone and the cream.  After taking the prednisone as directed, 10 mg., 6 the first day, then counting down to 1 on the last day, it helped a lot.  Within a few days it was back again!  I went back to the dermatologist, who again said it was an "allergic reaction" to something and he gave me a shot of triamincinilone, a new RX for 5 mg of Prednisone, and a new supply of the triamincinolone cream.  He informed me that I may have to take Prednisone for a 3-6 or even perhaps a 9 month period to fight this.  He added that I may also have to be referred to an allergist to figure out just what might be causing this. He advised me it may in fact spread to my entire body. I have an follow-up with the derm. on 10/29/09.

    I have not changed detergents, soaps, eating habits, nothing.  I am so frustrated and the itch and grossness of this rash is extremely irritating and making me edgy and unable to sleep due to itch and my mind working overtime to figure this out.  I finally thought about chemotherapy treatment and the Herceptin I had undergone.  

    I want to learn more about the long term side effects of Herceptin and really don't see anything online yet that is reliable and educational or even addresses this issue.

    Did you ever find out if your rash was actually caused by Herceptin?  Or a mixture of regular chemo and Herceptin?  Any and all information you, or anyone on this site can prove me I will appreciate with all my heart.

    Best of luck in your recovery.

    Donna J 

  • millertime
    millertime Member Posts: 1
    edited January 2011

    It has been now 1 year and 2 months from my last herceptin treatments and I have the rash also.  They are all over me too.  I have gone to doctors and skin tested and they told me that it is herceptin in my skin coming out of me.  There is no cream that works for me.  I am so sick of it and do not know what to do. I have been given pills to help me sleep at night so that I would not claw myself to death.  I have research trying to find out how long does it take to get out of your system.  I hope that maybe after the winter is over it will get better.  If anyone knows anything that can help me please let me know. 

    Janice

  • gezgerald
    gezgerald Member Posts: 2
    edited June 2016

    had 4 herceptin and now have 5 sores about the size of a quarter. Lois

  • gezgerald
    gezgerald Member Posts: 2
    edited June 2016

    have had 4 herceptin and have 5 sores

  • Ivegotthis
    Ivegotthis Member Posts: 28
    edited August 2016

    It was around the eighth Herceptin infusion I broke out around my waist, sides of buttocks, to my thighs. It wasn't itchy. RO said it was due to radiation. Onco said it was due to chemo. PCP said it was probably an allergic reaction. He prescribed steroids and the rash went away. It was never itchy just lots of red spots all over my midsection. In fact, I didn't even know I had it until I lifted my shirt to apply moisturizer to the radiated breast. The rash cleared up in a little over a week and so far has not appeared again.

  • WarriorCheryl
    WarriorCheryl Member Posts: 22
    edited June 2017

    I have had a non-itchy rash on my upper arms which appeared after I finished my Taxol cycle. Six months after finishing Perception, it is still there. My One says it may be perception related. My new primary care physician wanted me to see a dermatologist, but I know I did not want to go on a regimen of steroids. Topical steroids had no effect. I felt it must be because of an imbalance in my system.

    Recently, I was exposed to strep, and needed an antibiotic for my sore throat that wouldn't go away. I had a bad reaction to doxycycline, which resulted in black tongue. The nurse practitioner said that is related to yeast. I then developed a mild case of thrush in my mouth. Doctors normally don't normally recognize systemic yeast, because it is considered sepsis, and is normally seen in dying patients when their systems shut down and candida albacans yeast overgrows in the blood and organs.

    I had an aha moment, and then decided to go on a yeast free diet that is wheat free, dairy free, gluten free and fermented food free for candida albacans in order to purge my system. I jump started it with a 5 day regimen of diflucan, which I had been given at the start of my treatments but hadn't taken. I continued my probiotics and daily vitamins that are normally in my diet, and added caprylic acid daily. I also apply coconut oil topically. The rash seems to be fading a bit. I will continue on this path I will be adding high dose of vitamin C to see what happens.

  • Boson1
    Boson1 Member Posts: 2
    edited January 2019

    I am on Herceptin and Perjeta for life. Since finishing Chemo last June My rash began on one shoulder and spread down my arms and became unbearable. Nothing helped. A couple of weeks back I caught a cold and decided to treat it with lots of vitamin C. I took a gram every 1/2 hour. My cold got better but also my rash disappeared. I have continued to take Vit C and have not been bothered by the rash since. I'm not giving advice here, but I thought it would be selfish not to share my experience!

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