Long term herceptin only anyone ? Need some advice from experience please

Sam09

Hi ladies 
I am 12 months into herceptin and perjeta 3 weekly infusions and suffering terribly with insane burning and itching of my arms neck and shoulders. So much my life and most of the night is in ice and ice packs cause absolutely the one hundred solutions haven't worked .... it appears with me to  be a skin toxicity reaction to the perjeta.  My oncologist says it' half shelf life is designed to have the drug sit in body fat and slowly release over the 3 weeks till next infusion and I Have very little  body fat causing an immune skin reaction that is severe . In aus  perjeta can't be stopped and restarted and the drugs are working miracles for me .........but I think more and more no sleep is literally mind blowing and I'm feeling so desperate constantly with the burning itch. So I'm scared of going off  perjeta and going herceptin alone and scared of the implications of not being able to return to perjeta if I need it ..... oh woe anyone else in this or been in my dilemma?????

brightspace

Hi Sam sorry that the sideeffect is so constant  have you checked on the american site ..breast cancer .org i think i read that an increase in dietary fat was important for taking a drug but not certain if yours is the one..excellent site as many posts all best bright

Sam09

Oh hello brightspace  love the name  I haven't but will thank you much 

Kari_2015

Hi Sam, I have been on both for nearly 2 years.  Fortunately for me I don't have those side effects and what I do have while annoying is very bearable.  Unlike yourself I have plenty of body fat.... who would have thought I have a reason to love my fat!!     I hope you can find relief from somewhere and don't have to go off it, the contstant worry of waiting for the next result to be bad would also make me sleepless!

Coffee

I am also on long term Herceptin and Perjeta and suffer insane itching. I cant find any solutions either, tried everything suggested. I did read recently that perhaps its neuropathy more than Perjeta. I was given a tube of emla cream by the nurses on Tuesday and this is the first thing to give me some actual relief, even if its short term. Oncologist dismisses it and not a priority, but he should try lying next to me one ,night, if I don't cut my fingernails very short I scratch hard enough in my sleep to take skin off. 

Pamelamary

I have been on Herceptin only for the past 5 years - works well for me. No Perjeta as it wasn't on the PBS at the time. Perhaps you could look at the studies that do show the combination is better and ask your oncologist how much better? It must be hard to have such a reaction.
Best wishes.... Pam

Sam09

Hi ladies 
Thank you for your comments and coffee I commiserate with you for i too itch like crazy at night. Last treatment day I stopped the perjeta 20 mins into it and hoped  it would help but to no avail to my dismay it is worse than ever and straight after treatment which is not the norm it is normally worse the last 10 days before treatment it is unbearable.  I am still battling with the decision to drop it and hope the herceptin works alone after all Dr sloman and genetech invented it way before perjeta came into it and the results set the benchmark high. There are no long term safety results or studies yet for perjeta so that sways my decision quite a lot .........Pam wow that' is fantastic has it put you ned?

VanessaC

Hi ladies, yes I too have had the crazy itch, mostly on forearms & front of hands but went up to shoulders & under arms. My naturopath gave me a homeopathic blend of drops which seemed to help although you have to take them 8 times a day & then every 15mins 1 hr b4 bed which can be hard to manage! It contained sulphur & urtica 
unfortunately I have had further Mets recently diagnosed & operated on so I’m changing from herceptin & perjeta to kadcyla so the itching has stopped which is good but more Mets not so