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Sam09's avatar
Sam09
Member
8 years ago

ADVICE NEEDED SUPER ITCHY AND GETTING NO SLEEP ON HERCEPTIN AND PERJETA

   I am wondering if anyone else has terrible itching on herceptin and perjeta infusions. I am on my 10th  3 weekly treatment and what started out a slight itch around my neck  shoulders and arms has progressed to a burning itch that feels like ants are biting me. It is manageable during the day with cold wheatpacks however nightime comes and from  6pm onwards it is horrendous and has me in tears constantly. My onc says its a side effect 8% of people get on these drugs and has offered steriods however I don't do well on them and have refused. I am getting very little sleep and pace the house normally having to have bi carb baths and using cold packs and at the moment I shiver and freeze most of the night but it is the only relief I can get. Not to mention I wake everyone else up and they are tired too .  I have tried every cream on the market even japenese accupuncture and nothing helps. I am desperate and tired. I am very grateful that I do not have any other side effects but this is making me very very miserable and  I don't know what to do I cannot go off these drugs or I will die so I would very much appreciate some advice if anyone else has this problem on these drugs..... 
  • Amazonia's avatar
    Amazonia
    Member
    8 years ago
    Hi @Sam09,
    I am on Herceptin and did have some itchy days although it's calmed down now.
    I'm not on Perjeta.
    Have you tried antihistamine? Or calamine ?
    just a thought.
    How long is delivery time with the Herceptin.?
    I hear it used to be scheduled for 30 minute delivery but Ocologist discovered more patients had side effects ( mine was headaches) when at fast speed so now I get infusion over 60 minutes and have no problem.
    best of luck.
    A.
  • Cate64's avatar
    Cate64
    Member
    8 years ago
    @Sam09 Oh how I feel you, I too suffer the itch!!
    I have found a warm bath at night with QV Bath Oil, plenty of moisture after a shower & a phenergan before bed has helped tremendously, oh & dont let yourself be overheated that will make you itch, better to be on the cool side..... 
    Im a pro at treating my own bad skin as I have suffered it my whole life, the Xeloda tablets I am currently on have aggravated it but I have soon knocked its itchy effects on the head...
    Hugs Cate
  • Sam09's avatar
    Sam09
    Member
    8 years ago
    Hi ladies
                    Thank you for your comments. @Cate64 I am going to try the QV oil at night and the phenergan, is it safe to take regulary. I have been using QV wash and stopped soaps of all kind however have not tried the oil.  The infusions are over an hour each as when they did them over the 30 mins I too got headaches .  The hard thing is that.........I battle alone in my head this is long term I have been told while its working I have it and do not get me wrong I am so very very grateful for these drugs and the fact I qualify for them but this buring itch constantly is hard to bear. Even though I do not think I have the right to whinge as in many ways I am lucky, and it is so far my only side effect..... 
  • fairydust's avatar
    fairydust
    Member
    8 years ago
    @Sam09 the only other suggestions is ask your gp. My gp happens to have specialized in skin ailements I am in Melbourne. Why dont you have the right to whinge? Of course you do. I am also grateful that I am still here thanks to the drugs I have taken. However all along the way I sought solutions for problems that happened. (sometimes no solution).
    The other person I would ask is the chemist. You cant be the only person this has happened to so keep exploring options.Okay I remembered the oncologist saying 8%have this problem ...see your special...wishing you a good nights sleep.
  • Cate64's avatar
    Cate64
    Member
    8 years ago
    Phenergan totally safe but only take it at night coz it does make you sleepy, maybe try the 10mg tablets first... i take the 25mg,  not often only when the itch gets the better of me....
    Years ago I saw a skin specialist over some skin issues who told me only the first generation anti histamines are really any good for severe allergy, they are all they drousy kind...
  • JenoB's avatar
    JenoB
    Member
    8 years ago
    Hi @Sam09
    I'm also on 3 weekly herceptin and perjeta and have the horrible itch. Isolated to the forearms and base of neck but enough to drive me crazy at times. On the advice of my onc I now take a daily claratyne and that has made things heaps better. I definitely notice if I forget!
    Every now and again if it's really bad I take another one in the evening and that allows me to get to sleep. 
    I tried a few different brands of antihistamine before finding the one that worked for me, so good luck. 
    I also use the ice pack on really hot nights, but haven't found anything else that has worked. 
    I've been on this regime for a year now, with no end in sight (fingers crossed it keeps working for as long as possible!) so will be interested to see if there is anyone else with a better solution. 
    Hopefully this helps and you get the rest you need soon!
    Take care
    Jen xx
  • HIT's avatar
    HIT
    Member
    8 years ago
    Hi Sam09

    I developed a similar rash after the 2nd last hercepton.  You scratch so much you bleed.  Same area mostly but it progressed up my neck and to my mouth/eyes - quite swollen.  A Dermatologist gave me some cream - it was magic - but I've forgotten the name (sorry), but I had to use very sparingly. Probably steroid based.  Chemist cortisone creams/tablets did nothing, antihistamine helped. I think now that as my skin looked so old after treatment and I was mildy itchy constantly I applied cream (sorbolene mostly) more often to try to help, and got worse and worse.  I now use dermaveen only, soap and shampoo.  And these very sparingly, no oils, shampoos or any other cream.  At its worst I showered (just water) at night when I couldn't stand it anymore - then I got the magic cream and oh wow, within hours... 2 yrs later I still am very dry, still use nothing but the dermaveen on my skin and hair, don't like clothes, sheets touching my neck at night, am always a bit itchy but no more rashes.  Good luck, hope you find something that helps.  Who would think an itch can be so devastating.
    Pam
  • Sam09's avatar
    Sam09
    Member
    8 years ago
    Thanks Pam
    I will ask my onc on Monday before treatment... I had refused a dermatologist as I didnt think it would help.But will gladly go and see one now you have said you got relief.... I had japanese accuptucture a week ago to try to help and that was a major disaster. She inserted the needles and left me for 20 minutes and the needles stung and really hurt but I just thought that was what happened not having it before....
    That night ahhhhh the terrible sting and itch around all the needle sites and still today. Swollen red and super itchy as if I needed anything else to itch. I have tried all of the above advice and nothing helps.  I am quite beside myself with it. During the day its manageable however come 6pm and the itch/burn attacks start and do not stop. Around 4 times during the night I jump up and have to ice it and put stop itch on which eventually starts to work. But I am so tired... I am sure its not good to put chemicals in my skin constantly on top of the poisons they drown us in.... sigh.......... its funny isnt it when we have stage four breast cancer we feel so grateful that the drugs are there to help us stay alive but think we must realise these side effects are better than the alternative...   I know the medical profession will throw drugs at us to alleviate side effects from other drugs but to me that just plain means more side effects from them.... And the sad thing is no one can tell us with these new drugs what side effects long term we can expect...  I have found the doctors really do not know what side effects each drug will cause for each different person and if it is a rare one then they refuse to believe its the drug...
    That is where forums and this website is a godsend cause I find there is always women who share these same side effects as you and then you know your right and not going mad.... But your comment who would think an itch could be so devastating is spot on..