Her 2 ladies can you offer any desperately needed advice?

Others have offered advice @Sam09 that I would have.  Glad you've managed to get into an immunologist.  Have you had a look at the sister site for this network for the US?  I only ask because years ago, a friend had such a rare condition that the doctors here had never seen it but the size of the population in the US meant that, while still rare, there were doctors working with it and a patient group.  Possibly, there may be some women who have experienced your reaction and found something that helps.

Hi@sam, I have not experienced what you are going through I can't imagine how you must feel. I do agree how at the end of the day we ourselves are to make the discision on our wellbeing. And true one can feel so alone. Know that we care are hear for you really think it through do what's best for you I agree your young and find it within yourself to not give up the fight , stay strong as times these are words and when one isn't feeling there best you don't see much at all. The reason we are all on this forum andthank  goodness to all who started it is to help each and everyone of us dealing with breast cancer and all the pros and cons that come with it.My heart and thoughts go out to you best of luck with it all. Remember we are hear for the good and bad days. Take care of you Shazxx

Hi Sam09
I also suffer from the perjeta itch and will be taking it, along with herceptin, for ever. Thankfully I take a daily antihistamine (Claratyne or Telfast) which gets me through ok until mid arvo. I find a swim or cold shower works well after that along with ice packs. Have recently also added a phenergan at night if it's really bad, as according to my once this helps relieve the immune response and it helps me sleep which in turn allows me to cope better with the itching the next day. 

I can't imagine how I would be feeling if this didn't work for me, as it's an impossible choice you're faced with. It might be worth seeing if your doctor can prescribe something to help you to sleep (if the phenergan doesn't work) so that at least you have some respite while you sort out a long term solution. 
Take care xx

Lesley thank you! It was suggested on here i see an immunologist and I'm booked in already to see one although I can't get in till the of 19 of march unfortunately.  I find it interesting you say your son reacted to certain foods as I find tomato based anything makes it unbearable and certain foods that I love . Spices sauces chutney just can't have anything but bland food and no sugar however it still is making my life so miserable. I will certainly look into this and I appreciate this immensely.

Are you able to take Zovirax at all? A few years ago my son suddenly seemed to become sensitive to most foods and he broke out in hives every single time he ate anything unless it was a white food. He was 14 at the time and ended up not going to school for over four months and he lost a lot of weight. Anyway the only thing that helped him was Zovirax. Instead of taking one each 24 hours, he was on them 4 hourly under orders from an immunologist. After seeing multiple specialists they finally found the problem was that his own immune system was attacking him and causing all the problems. A course of antibiotics fixed him thank goodness. This all took over 12 months. Perhaps you could ask if this is a viable option for you? All the very best to you xx Lesley

Oh my goodness j I'm so sorry ! Did you have the itching arms because of brain mets do you think I might have too then and that is what it is?? Any side effects from the brain mets ? Do you have her2? I feel sick. Oh No!

Dear @Sam09, Best wishes from jennyss in Western NSW

Hi Sam 
i was on same treatment and suffered unbearably itchy arms. In June last year the cancer metastasised in my brain. Long story short. I was on steroids as part of the brain radiation treatment. The itchies subsequently lessened and then disappeared after about six weeks on steroids. No longer on steroids or herceptin or perjeta.
Not sure if that was the reason but it could be worth asking the question. All the best

Good luck with the immunologist, fingers crossed they have a solution!

Unfortunately only a break from herceptin as in australia the rules of our pbs are not a break more than 6 weeks from perjeta or you can never have if again.  I have had a 6 week break from both and it did not help one bit. Its both drugs causing  it. The long shelf life on these targeted therapy means the drug sits in your body fat which I don't have much of and releases into your system over the next weeks . My reaction actually gets worse and worse and is the most severe just the week before the infusion . Its weird really. I have asked my gp this morning if he would fax a referral letter to an immunologist as was suggested here. I found one in Brisbane that specialises in drug reactions. OH please let it help!!!!!!!. My family is even cracking under the pressure of this we are all tired and I won't go out anywhere because I need all my ice packs constantly and really I think they are beginning to think I'm more trouble than I'm worth. Sigh.....