Her 2 ladies can you offer any desperately needed advice?

Sam09

Hi ladies 
I have a huge dilemma.  As anyone who has read my posts I am on herceptin and perjeta for ever.  Unfortunately I have down the past 10 months suffered terribly with a severe skin reaction.  No creams no antihistermines dermatologists or many other treatments have helped. If finally appears its an immune response my body has reacted with that affects my mast cells and produces an extreme over abundance of histermine causing severe burning and itching and many many sleepless nights in ice and tears. Slowing down infusions tablets before trying the herceptin alone and visa versa no avail even extending 3 weekly infusions to a month and 6 weeks. So here I am..... Do I stop treatment ? I AM SCARED STIFF i can not live like this anymore however sadly the dual treatment has worked wonders for me elimination of liver tumors all 12 and 4 spinal mets . 
HELP please? My oncologist  says well it' your choice? I DO NOT WANT TO DIE I am to young.

SoldierCrab

Sam09 have you asked a naturopath if they can give you something that is acceptable by your onco to take while on both medications Just a thought ... 
What other options are there for you? 
I am not HER2 but I can sense you panic and also your pain regarding your skin reaction. 
Soldiercrab

Zoffiel

What a crappy situation @sam09 You are stuck between the devil and the deep with this one, take the drug that is shrinking you tumors and scratch yourself mad or refuse it and take your chances. That sucks. I'm having a similar, but not quite so critical, dilemma with taking Femara.

Can you take a break for a month or so to give yourself a bit of a breather? What would that mean to the over all effectiveness of your treatment? Oncologists are not always the most creative thinkers and sometimes don't suggest anything outside the gold standard treatment. Quite rightly so, but can you ask them what they think about a break and if they have had other patients who have tried that and what the outcomes were. The answer is likely to be 'It's your choice' but if you are seriously thinking of ditching the treatment, just calling time out for a couple of weeks may help your skin heal and get you into a better head space.

You don't want those tumors growing back and, as you say, you are too young to just throw it all into the wind and let nature take its course.

Maybe swap oncologists. They are not all the same, and if the one you are seeing now is not that supportive, a fresh view may help. Marg xcxx

Jane221

Oh @Sam09, that's such an unimaginably horrible decision to be weighing up. I can't offer anything more than my sincere hope that you will be offered a workable solution soon. The suggestions made by @SoldierCrab and @Zoffiel would be good starting points. I had some heart issues on Herceptin (which I know is nothing as bad as the situation you are faced with) but was allowed / encouraged to take a short break while meds etc were worked out and to give my body a short break, so perhaps that might help? Have you spoken to the oncology counsellor on the BCNA helpline: 1800 500 258? They might be able to offer some other suggestions and help you through the decision-making process. Best wishes, Jane xx

onemargie

Hi there Sam wow what a dilemma you are in for sure. It’s not enough you have to take the meds let alone the awful side effects you are having.  Have you tried any alternative medication? Like perhaps a Naturopath could help ? Or I don’t know but even the medicinal marijuana would be worth a try perhaps (if you. An get it) ? It seems to be effective with lots of different things reportedly. Don’t give up there must be something out there that can help. If you PM me a pic I can ask the skin dr I work with for his advise and see what he says. It can’t hurt.  I’ll help if I can. I know there’s been a few patients I’ve mine  who have tried the hemp cream and products  from the body shop for skin irritations. Let me know. Margie xx 

Harlee

@Sam09 you mentioned that you have seen a dermatologist but have you seen an immunologist who may have some options help you? I will warn you that immuno-suppressant drugs also have a list of side effects a mile long but faced with this unbearable reaction and the scary risk of not treating your tumours - it could be worth trying.
I hope you are able to find something that works for you xx

Tilly45

Hi Sam
so sorry to hear about your terrible discomfort on these drugs. I think you need to ask a lot of questions and don't stop until you get somewhere. All good advice from the other ladies. You have to be proactive, no one could put up with that level of discomfort, there must be some sort of solution other than stopping treatment. Thinking of you, let us know if you get some advice that helps. xxx

Sam09

Thank you everyone I really really appreciate you trying to help me. I have seen lots of naturopaths no help unfortunately. Cannabis oil I immediately went on when I was diagnosed and went down that path instead of chemo and unfortunately for me and my great faith it would heal me naturally it then spread rapidly.  It didn't help . The comments about the oncologists are so true I contacted Roche the drugs creater 5 months ago and they were so concerned they emailed my doctor as they wanted to work with  her to try to rectify my issue before it got worse as it is now and even more distressing to me the emails and phone calls went unanswered . It simply was not a priority .I'm afraid. So here I am right now as always afraid of the night to come. I'm so tired I can not function properly and neither can my family who I keep awake and feel bad for not being able to help. I have radically changed my vegetarian diet so much it' horrible to try to eat the blandest food imaginable to try to help but it is just my bodies way of saying not for me. Last night I felt like someone had poured acid on my skin and felt if there had been a bridge next to me HELLO over I would have went ......i have to face facts here no one can help me because it' simply my own personal hell......

HIT

Oh Sam, this all sounds horrible.  Am I reading correctly that Roche wanted to help but your onc hasn't jumped on board?  Would it be worth getting another oncologist?   I have answered one of your posts before.  I just had the 12 months of Hercepton and had a similar reaction, but not till the 2nd last dose. (Major itching and like ant bites all bloody night) A dermatologist thought it was  dermatomyositis - so 1st visit just a biopsy and sent off tests.  2nd Visit the biopsy showed just an allergic reaction but he finally asked my history (ie hercepton).  He told me to book another visit in 2 weeks.  Then low and behold his receptionist cancelled this visit.  I should of been quicker and refused.  Oh well.  I just gathered he read up on hercepton.  He did give me some cream Diprosone OV, which I said had worked.  But now I am not 100% sure.  When I got this cream I showered and put nothing else on but the cream!!  It worked.  But as soon as I went back to normal moisturizing it came back.  Cut it short - Probably 3 years since I finished hercepton - still can't use much moisturizer - as in too much or thicker ones - am using Moo Goo wash and shampoo at moment which has been great cause I can get away with no further moisturisers.  Anything that is coating my skin results in the itchies.  Even sweat, if the itch starts getting worse I jump in the shower.  My skin is still very dry and mildy itchy, but it is manageable.  I don't use sunscreens, makeup, perfumes etc anything else. When I put something to heavy on the itch starts around my mouth and you can just feel it racing to my eyes and down my neck from there.  My eyes and mouth get swollen with a lovely purple red rash on my eyelids (hence the dermatomyositis).  The major itchies just seem to be confined to my neck though. (The pseudo ant bites).  I can't even imagine what you are going through, I only had a few months of it and have never cried so much. I hope you find some help. Pam

Zoffiel

If you can find the energy, shop for a new oncologist. It may not help your immediate circumstances, but it has to be better than feeling dismissed. You can interview as many as you need to ( yes, there is a cost attached to doing that if they are private) and hopefully you will find one that you can connect with. None of them have crystal balls or magic wands, but a change can be as good as a holiday.

Giovanna_BCNA

Hello @Sam09,
Sorry to hear of your dilemma, sending you a private message

Kari_2015

@Sam09.  You can take a break from these two and go back.  They stop ladies who have bad results with their heart tests for a break and then continue.  Take a break, without the horrible reactions you might feel better and be able to make a less emotional decision on how to proceed.  I would definitely look around for a different oncologist for at least a second opinion. All the best, I can't imagine how you are feeling going through this.

Sam09

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.....

Kari_2015

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

jbarclay

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

jennyss

Dear @Sam09, Best wishes from jennyss in Western NSW