Fill Out Your Profile to share more about you. Learn more...

Itching while on Herceptin and Perjeta

sandystrong
sandystrong Member Posts: 2

Hi! I'm wondering if anyone can help me with this severe itch that I have that I feel is due to the Herceptin and Perjeta that I receive every 3 weeks.

I am on Claritin and Benedryl. I have tried creams and steroid creams (which my Dr's allow me to use sparingly) and also oatmeal bath.

Sometimes I have to scratch my skin with a brush because I'm so itchy! Almost feels like little bites on my arms and back or prickly pins.

I recently did an experiment with my cream that I use for neuropathy on my hands. I applied small amount on my arms and wrists. I feel as though it may have worked.... Hard to tell bec it was the last week before chemo so it could have been that some of the side effects were getting less?

The problem is that there is Nifedipine and Gabepentin in the cream and my BP dropped to 70's/ 50. Dr. Prescribed me an oil based low 0.01% steroid prescription and low dose perdenisone for 5 days....

Maybe it's helped a little... Was wondering if anyone has anyone her suggestions?

Does anyone feel this itch could be a nerve thing or do you feel it's more allergy type reaction?

I would really appreciate any advice/opinions :)

«1

Comments

  • Fitztwins
    Fitztwins Member Posts: 144

    i have minimal itch, thought it was dry skin/weather.

  • leggo
    leggo Member Posts: 379

    Hi Sandy. I got itchy skin with several treatments, including Herceptin. I've never had Perjeta. I FINALLY figured out it was liver toxicity (usually reversible) from the actual treatment. Docs were insistent that it wasn't from treatment and not very helpful, other than prescribing antihistamines and ointments.I had to figure it out on my own, so I asked that my liver enzymes be tested after treatment and they were always through the roof and settle back down later. Liver issues can cause itchy skin. I suspect that they never put the two together because blood tests were always 2 days before treatment when everything was fine. Maybe you can ask for the test when the itch hits and have blood drawn just then to see if it's the problem? If you need more info, please Google " liver itchy skin" to get more detailed info. My phone won't let me add any links for some reason. Hope you figure it out. I know it can make you crazy.

  • moderators
    moderators Posts: 7,883

    Hi Sandy and welcome to Breastcancer.org!

    We're sure you'll get lots of great advice from the other members here shortly. In the meantime, you may want to check out the main Breastcancer.org site's side effect page on Itching for some tips to help manage this uncomfortable side effect.

    We hope this helps! Please check back in often and let us know how you're doing!

    --The Mods

  • josalive
    josalive Member Posts: 53

    Hi Sandy -

    I had terrible itching on my arms while taking herceptin and perjeta. It was horrible and to the point where I had open wounds all over my arms because I had itched it raw. Luckily, I found out that it was actually being caused by some of the supplements I was taking and the only way I found out was because I went on vacation for a week and didn't bring my supplements and it went away and as soon as I got home it started up again. I stopped taking everything and it cleared up. I introduced one back at a time and I think I found it to be the mushroom supplement I was on. Now that I've cut it out I don't have the itching and my WBC count went way up! The nurse thinks it was suppressing my immune system (the exact opposite of what I was taking it for). Hopefully you can find the cause or at least get some relief if it is the H & P causing it. My doctor did prescribe a powerful steroid cream that seemed to help a little. Good luck!

  • sandystrong
    sandystrong Member Posts: 2

    Thanks so much for the responses so far. The only supplements that I am taking at this time are vitamins. I do take Benedryl and Ativan at night for itch.... I'm not sure it really helps. I will ask my Dr to check my liver enzymes during the itch. I do agree that when I get my blood drawn the morning before chemo my itch is better! So maybe the liver enzymes are elevated during the itch? What did your Dr do about that?

    I have tried coconut oil and all kinds of creams. And yes, I have scratched my skin open which I try so hard not to do:(

    I will also read some of the recommended articles.

    Thanks :)

  • leggo
    leggo Member Posts: 379

    Sandy, unfortunately there's nothing that my onc could do. He did say though, that at a certain bilirubin level (that was the culprit apparently) he wouldn't do treatment. I don't remember that number. I'm sure most oncs follow the same protocol so if you ask, maybe yours will tell you? I did reach that number :( As for what stopped the itch.....nothing, seriously. 'Bout made me insane....I wanted to crawl out of my skin. Keeping you in my thoughts.

  • Pipandor
    Pipandor Member Posts: 130

    I have three Herceptin infusions left to go and I am going insane from the itching. I have tried every type of cream, Benadryl and Reactin. The only thing that works is icing and that is hard to do during the night and at work. I'm hardly sleeping and having trouble focusing at work. I'll mention to onc but she generally brushes these things off. If anyone out there has a clue, please share!

  • Strong65
    Strong65 Member Posts: 36

    I know this might seem strange, but I saw a post somewhere and the person said they had been to a skin Dr. They figured out it was due to inflammation in the skin. I figured I take Advil fir inflammation so tried it and it works. If it's too bad and advil doesn't take care of it I use ice packs... always works for me..

  • ddart
    ddart Member Posts: 1

    I have tried everything for the itch too. The one thing that seems to help is frankensence oil. I mix frankensence and lavender essential oils in a carrier oil like argan oil. I use it whenever the itch starts and it almost always soothes the itching.


  • minustwo
    minustwo Member Posts: 13,067

    I suggest that your call your dermatologist, a true skin expert.

  • Pipandor
    Pipandor Member Posts: 130

    Thank you ladies for the suggestions. I'm getting by using a compression bandage to wrap a soft ice pack around my arm and applying lots of extra strength lanacaine. My onc doesn't think its caused by the herceptin because it's localized on my left arm but it does get itchier right after infusion. Wondering if it could be a neuropathic itch caused by the radiation which left my left armpit and rib cage pretty sore. Hoping it will fade over time like the other treatment side effects.

  • Pipandor
    Pipandor Member Posts: 130

    Thank you ladies for the suggestions. I'm getting by using a compression bandage to wrap a soft ice pack around my arm and applying lots of extra strength lanacaine. My onc doesn't think its caused by the herceptin because it's localized on my left arm but it does get itchier right after infusion. Wondering if it could be a neuropathic itch caused by the radiation which left my left armpit and rib cage pretty sore. Hoping it will fade over time like the other treatment side effects.

  • Pipandor
    Pipandor Member Posts: 130

    It's now been almost 6 weeks since my last Herceptin and thank goodness the crazy itch is gone. Four months of that kind of itchiness was possibly the worst part of treatment because there was no relief from it and it kept me awake.

  • Beatmon
    Beatmon Member Posts: 617

    Both of my arms itch like crazy after infusion of H&P... and my cheeks flush evernight for 2 weeks. ....for almost 3 years now!

  • josalive
    josalive Member Posts: 53

    I couldn't take it anymore. I wasn't able to sleep at night because of the itching and nothing I did helped. It spread from my left arm to my right arm to my back and then to my chest. Today I dropped the perjeta and just did herceptin. I am hoping the itching goes away or I might lose my mind

  • minustwo
    minustwo Member Posts: 13,067

    josalive - I'll be interested to hear if that made a difference.

  • Basia
    Basia Member Posts: 345

    I am going insane with this itch!I have seen 2 dermatologists and an allergist trying to cover all bases. Nothing seems to help. For a while I felt some relief with milk thistle, thinking its a liver thing, but that relief was short lived. Various creams and oinmtents, nothing helps. At one time they told me to take decadron, it calmed the itch, but has its own SE.

    I see my MO tomorrow for my quarterly followup. I am considering stopping Perjeta. Terrified of the prospect, but this itch is insane. I am at a loss. I've been on it for going on 3 years, not sure if going off is a viable option. I have tried skipping an infusion, but that didn't help, MO said it takes 2-3 months for the itching to subside after stopping.

  • minustwo
    minustwo Member Posts: 13,067

    Basia - so sorry you're dealing with this. I assume you tried plain old Claretin? Or other allergy meds like Zyrtec & Benedryl? Please check back after you see you MO and let us know what he says.

    I'm going crazy itching but I'm well past active treatment. It's apparently dry skin from aging. The only ointment that works for me is Fluocinonide - but it is a topical steroid so I don't use often.

  • josalive
    josalive Member Posts: 53

    Basia - I hear you. I just couldn't take it any more so I dropped the perjeta on my last treatment. I had been on it for just over 2 years and am currently NED. My doctor has been urging me to go off it for a while. I always pushed back but this time I just finally feel that my body has had it. I'm just a few days out from skipping it. I'll check bac in a month or so and let you know if the itching gets better (I'm sitting in bed with multiple ice packs as we speak). Good luck!

  • LisaY
    LisaY Member Posts: 29

    I'm also going crazy with itching. My arms, legs, and back look terrible. My legs itch the worst. One thing I have found that helps a bit is taking a bath in a mix of epsom salt and sea salt - half a cup of each. Then I put sweet almond oil on my skin. Sometimes I use a calendula cream. Wearing light, breathable clothing helps, too. But, like some of you, the itching has me considering going off Perjeta.

    I'm definitely interested in what your experience is, Josalive.

  • Sbench
    Sbench Member Posts: 1

    Hi. I'm having the exact same issues. It's horrible and drives me crazy. I've found nothing that works. What was the cream for neuropathy? I'd love to at least try. Did it stop when you were finished with your neuropathy?

    Any help would be so appreciated.

    Thank you, Sue

  • jplindstrom33
    jplindstrom33 Member Posts: 1

    Hi, I too have had excruciating itching in both of my arms for nearly a year. I had no idea it could be related to the herceptin until I happened upon this board. (I realize this is stage IV board but nowhere else have I found anyone posting about this issue.) I've been to dermatologist and neurologist, dermatologist says it is "brachioradial pruritis (itching)", and MO and neurologist say it's nerve damage from chemo. I have tried Claritin and various creams as well as Lyrica and nothing helps - except ice packs. I too am losing sleep (and my mind!) and my skin looks terrible from all the scratching. I have found no association between timing of treatments and severity of itching. Crazy thing is that some days there's no itching at all. I have 3 more Herceptin to go, praying for relief before summer.





  • Strong65
    Strong65 Member Posts: 36

    I know this may seem strange, but try taking Advil. It worked for me and the itching would stop. Something about inflammation and itchiness... I have discovered though, that in my case it was the Perjeta, too about 2 months after I quit receiving it and my itching is completely gone.

  • My name of MJ DeCoteau and I am the executive director of Rethink Breast Cancer.

    We are looking for woman who have been treated with Herceptin-Perjeta to talk about their experience.

    You can find more information in this posting or please send me a private message if you would be willing to participate.

  • toto06
    toto06 Member Posts: 47

    I was on herceptin for one year September 2010 to October 2011 and experienced no itching. Roll on the clock to 2015 when perjeta was introduced with herceptin and the itching started at first it was not too bad but as time went on and the more infusions I had the itching got worse. The main site for my itching was my neck and head and it usually happened at night and was causing me sleep deprivation. I too drew blood from my neck and the scratch marks were awful, however, my oncologist suggested that I take an antihistamine (cetrine) tablet daily and for the last 8 months (aprox) I am glad to report that all is well. I definitely know that the antihistamine is working because I ran out of them and through one thing and another I did not replace for 4 days and the itching was already back. I am positive that the perjeta is the source of my itching but I am reluctant to go off it as thank God I am stable and I do not want to interfere with my regime. Hope this is of some help to someone.

  • Aquarius53
    Aquarius53 Member Posts: 1

    I too suffer from the un-relentless itching on the arms. More severe at night, and can get no sleep...only relief is ice packs. I was diagnosed in 2011 with breast cancer; again in 2014 spread to liver; again in 2017 on chest wall. Now taking Herceptin/Perjeta every three weeks..."in-definitely"...I've been itching for a year and literally going crazy. If anyone finds relief please share. I try everything.

  • minustwo
    minustwo Member Posts: 13,067

    I don't recall itching specifically while on H&P, which I finished in 2014. But I have extreme itching on my back & head ever since. The derm doc keeps telling me it's senior dry skin. Of at least 15 different OTC lotions & creams, and 12 prescription lotions & creams, the only thing that really works for me is an expensive steroid cream, but - a) I'm not going to routinely use steroids and b) it's a royal pain to get it to the middle my back. Literally some nights I get a fork from the kitchen drawer and would be happy to use steel wool if I thought that would allow me to sleep.

    I can't take Benedryl because of the side effects. I'm really ready to jump off a cliff if I can't get any sleep. Just this week I asked the pharmacist if he thought maybe either Claritin or Zyrtec might help since I don't see my PCP or derm doc until October. He suggested Zyrtec so I'll get some. Hope it won't make me groggy the next day.

  • LisaY
    LisaY Member Posts: 29

    I, too, have been going crazy from itching on H&P. Last week I tried "float therapy" where you float in a very concentrated epsom salt solution, and I think it helped, both to heal the scratched-up skin somewhat and to reduce the itching. I think it's worth a try.

  • nowaldron
    nowaldron Member Posts: 40

    Hi,

    I have been on H+P for 2.5 years. The itching on my arms began in the fall of 2016. At first it was just a bit on my right arm, but then it got progressively worse. It felt like I was being stuck with a pin from the inside out. In the past few months, it has also spread to my chest. As others have mentioned, it tends to be worse at night but can start-up any time of day. Of all the side effects I have suffered, I think this itching is the worst! I also drew blood on my arms and had unsightly sores as a result. My onc sent me to see a dermatologist who prescribed Gabapentin and suggested it is from nerve damage. I tax three capsules before bed so that at least I can sleep. I will be on H+P forever unless something better comes along. I've learned to live with the itch, but it is no fun, to be sure.

    Be well,

    Nancy

  • Dhk
    Dhk Member Posts: 1

    I have been searching for answers for this relentless itching. Only on arms. Have scabs from itching and lose sleep. I am on Perjeta and Herceptin. Ice packs help. My oncologist had prescribed an anti depressant to dull the itching. I have not started taking yet due to reading the sideeffects. He thinks it's from neuropathy but just a guess. Anyone else have suggestions?