A rest from herceptin

Thank you for your kind thoughts Mich. it is why this site is so good, because people like you, who may not be able to help with advice on a particular subject, but can still help by giving support and encouragement. Thank you so much. My husband has been wonderful throughout this whole journey thing, but now feels helpless as we just have to wait and see what will happen. I have my tears at times too. Today however, was spent enjoying our grandsons as they played running out in the open air and rolling down the grassy banks. We both enjoyed the simple pleasure of doing nothing special through an almost 6 year old and a going on 10 year old........JOY!!!!!

Hi Jill, This time last year, after 3 lots of Herceptin along with 2 other chemo drugs I to had to have a break becasue my heart did the same as yours. I ended up in isolation ward for 5 days becasue my blood count dropped also. I had to stay off herceptin until I finished my radiotherapy, I missed 3 lots and then started again with another big dose. My heart count along with everything else came back to normal and I have now finished all my treatment. I stayed really positive through the whole thing but asked lots of questions and felt satisfied with the answers given. Request tests if you want them, it is your body and you should be able to find out what ever you can.All the very best wishes for a complete recovery from this unreal journey we have all travelled.

Hi magicmum and Louise for your suggestions. I have been finding this 'break' hard to digest, but am coming to terms with it. You do tend to have to trust the doctors, and my oncologist is very easy to talk to, and willing to answer questions. Just worried about my heart function and how long the break will be. When I had my herceptin this week I asked the nurse about it, and she said I will be closely monitored. So I guess I will have to wait, I am hoping my heart function will not drop any further, then I won't need the break. Always trying to look on the positive side. Thanks again Jill

Agree - ask questions as much as you want to, it is your cancer and you need to know. I know that many docs and others advise against Google but I googled everything I couldn't see in the booklets I was given. You learn to sort the rubbish from the facts.

Dr Denis Slamon the inventor of Herceptin is at UCLA research - that site might have some anserws for you. DOn't be afraid to question.

 

much love

magicmum

Agree - ask questions as much as you want to, it is your cancer and you need to know. I know that many docs and others advise against Google but I googled everything I couldn't see in the booklets I was given. You learn to sort the rubbish from the facts.

Dr Denis Slamon the inventor of Herceptin is at UCLA research - that site might have some anserws for you. DOn't be afraid to question.

 

much love

magicmum

Hi Jill Yes I have had a break from herceptin. It was to have surgery. I went off after 4 months and was off for 3 cycles. When I started again I had an increased dose (700ml I think) then have settled into the normal routine. I'm told they rarely have patients going off herceptin for surgery so they weren't too sure about when to start again, and the first infusion (the increased dose) I had a reaction. So that was a worry. I basically picked up where I left off as we only get the 52 doses. I too was/am concerned about stopping, I have more surgery later in the year when I will need to stop again. I don't know what to think really, I feel like there are so many unknowns, and the doctors don't really seem to know either. If patients follow the standard of care the doctors have lots of cases to help make decisions, but if you diverge from that standard they seem to guess. I feel like I have no choice but to trust their decisions while keeping a good check on myself and push them for answers/reasoning if I need to. I believe we need to be vigilant with our own care too because we suffer any consequences. It sounds like you are on top of things and asking questions. Sorry I can't help further, Xxxlouie

Hey JillI am sorry in that I can't relate to what you are dealing with but justed wanted to let you know I am thinking of you while you are going through this tough time.Lots of love always, Mich xoxoxoo