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On herceptin and perjeta , stage 4 , itchy skin and now itchy scalp -anyone treated itch sucessfully

noosa_blue150
noosa_blue150 Member Posts: 211
edited February 2023 in Metastatic breast cancer
I’ve been on H&P for over 12 months -experiencing  itchy skin for last 4 months or so. Mostly red spots on chest and shoulders/back
Told oncologist and am using cortisone cream on chest and shoulders; also getting DEX with each three weekly H&P infusions . NOW have developed itchy scalp - last night I ended up getting a freezer block and putting it on my head in bed ,which whilst seeming to,help is tricky in that the freezer block does melt so end up with wet pillow. Freezer block square so doesn’t mould onto scalp properly 
I’ve tried taking antihistamine tabs as well , itch on back/chest better although hasn’t gone 
im seeing dr again this week so will ask her what I can do , but thought I’d ask if anyone here had same issues and what did you do to help ?
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Comments

  • Afraser
    Afraser Member Posts: 4,369
    Only on Herceptin, and no side effects at all, sorry. I do hope you find a solution soon, best wishes. 
  • noosa_blue150
    noosa_blue150 Member Posts: 211
    Yes I think it’s the perjeta causing the issue -when only on herceptin before stage 4 diagnosis , I didn’t have these issues 
  • Blossom1961
    Blossom1961 Member Posts: 2,374
    @noosa_blue150 I have the same thing but not on my head. My Onco told me it wasn't related to  the herceptin/perjeta and to go see my GP. My GP told me it was related to the herceptin/perjeta. The nurses in Oncology day ward told me it was common and to just continue with the twice daily antihistamines and urea cream. I also have a bath once a week with coconut and argan oils. The bath seems to help the most giving one or two days relief. If you find an answer I would love to hear it. I start at my new Onco this week so maybe she can illuminate further. I have been on the herceptin/perjeta mix for nine months this time around. I was on herceptin in 2018/19 for twelve months and got an itchy torso but it only lasted for a couple days after each treatment back then. This time it sticks around permanently.

  • noosa_blue150
    noosa_blue150 Member Posts: 211
    edited February 2023
    Update - saw the oncologist today .she said that perjeta sites don’t report itchy skin issues as side effects BUT she’s now hearing from various patients about it . Nurse practioner friend mentioned to,me a topical corticosteroid lotion called Novasone , so oncologist wrote out a prescription for me to,try .suggested applying nightly ( will probably mean I’ll,have to wash hair daily again but …..) . She suggested stopping use if itchiness stops . I’ll report back in a few weeks 
  • arpie
    arpie Member Posts: 7,565
    Sorry to hear about the itchy skin @noosa_blue150 and @Blossom1961 .... when my husband's chemo caused the same, we actually used CORNFLOUR on him & it really helped take the edge off it!!   

    I'd stand him in the bath or shower & would sprinkle it all over the affected areas & gently rub it in  (which was most of him!) then after he put his clothes back on, I'd just run the water & rinse it off the bath/shower - as it sort of dissolves quite easily!   Definitely worth a try ...  

    A bit trickier for your scalp tho :(   You could try it ..... 
  • Blossom1961
    Blossom1961 Member Posts: 2,374
    I hope it works for you @noosa_blue150. I am unable to use steroids but will give the cornflour a try @arpie.
  • Blossom1961
    Blossom1961 Member Posts: 2,374
    @noosa_blue150 How is it going? Does the cream work. My head has now started itching. 

    Last night: Scalp itches. Don't scratch, don't scratch' don't scratch, arrrrgh, scratch scratch scratch. ETC, ETC, ETC. Finally I gritted my teeth and stopped scratching. Fifteen minutes later the itch subsided enough to get drowsy and sleep. That was a hard fifteen minutes.

    @arpie I tried the cornflour on my body and it helped although I did have to explain to the nurse why I had all these white bits on me lol. 

    I just read that applying apple cider vinegar helps so I will try that before bed tonight. Will let you know how I go.

    Why does this targetted therapy have ongoing side effects? During chemo the side effects would last a week then continue to subside until the next treatment. These side effects just keep on giving for the full three weeks between treatments.
  • noosa_blue150
    noosa_blue150 Member Posts: 211
    I used it for several days and scalp itching has stopped.fingers crossed . Skin on shoulders still itchy on occasion, I’m going to try taking antihistamine daily in am and see how that goes 
  • Blossom1961
    Blossom1961 Member Posts: 2,374
    I have just pickled my head. Results tomorrow.
  • Blossom1961
    Blossom1961 Member Posts: 2,374
    edited March 2023
    Interesting. No itch last night. Will try again tonight. In meantime, I am going to pickle my ankles and arms. Pity hubby doesn't like vinegar
  • Blossom1961
    Blossom1961 Member Posts: 2,374
    edited March 2023
    Okay. Yesterday I diluted some apple cider vinegar and washed down my arms, hands, ankles and feet as these are the most prone areas to itching. I had no itches for four hours and then the arms started. I put more vinegar on them and then itch subsided for another four hours. I am moisturising two hours after the vinegar so my skin doesn't dry out. Last night I did the vinegar on my head half hour before bed, allowing it to dry before I hit the pillow. I diluted it this time. No itches. Not sure why. Ph maybe? In which case sour beer may do the same with a ph of 3 (vinegar is 2-3). Also, not sure if normal vinegar will work.
    Told Onco yesterday. She was amused and told me to continue but to make sure I stay moisturised.
    I guess I will stay pickled  :D
  • noosa_blue150
    noosa_blue150 Member Posts: 211
    Love it -I’ll try if I get itchy once home from holidays .skin ok at moment 
  • Blossom1961
    Blossom1961 Member Posts: 2,374
    I am now only applying once a day. After my shower I dilute some vinegar and splash it from my hair down to my toes and everything in between. Itch has nearly disappeared and is certainly manageable. I love it when non synthetic remedies work
  • DarwinGrl
    DarwinGrl Member Posts: 1
    I have a lot of itchiness!! But I'll ask you; does it come and go? If you distract yourself, can it sometimes ease? I've seen 2 dermatologists and I was diagnosed with 'cutaneous dysaesthesia'. It's worse at night, worse with heat. It's spreading over time. It's nerve related, so topical creams don't really help. Started on upper arms, now on neck, down arms, back
  • noosa_blue150
    noosa_blue150 Member Posts: 211
    Mine has been quiet and not a problem for last month - not sure of why as I haven’t used lotion or cider . It’s just gone dormant ……..