Hi everyone I haven't been here for a while. Finished Docetaxel in February, which I had with herceptin, and things have been going along much easier than when on I was on the chemo. However my oncologist has told me I may need a break from herceptin as my heart function has dropped to 54% and I have to have another gated heart test plus an echo cardio one before I see him in August. If it is 50% or lower I will be put on a break. I am having anxiety attacks about this as I am afraid that while on the break, the cancer may get in again. Has anyone had a break from herceptin? If so how long? Do you just pick up from where you left off, or start all over again? Hope someone can give me some answers or questions to ask for when I see the onc again in early August Bye now Jill

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

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

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 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

A rest from herceptin | BCNA Online Network

28 Replies

Jk48au
Member
12 years ago
I have found that tamoxifen makes me feel very tired, and I need to keep well hydrated and not skip meals or I get very light headed. I take it at 6.30pm every night so I can sleep off the tiredness overnight. This effect began almost immediately with me, but now the herceptin is finished, I am hoping the tiredness may not be as bad. Best wishes for the rest of your treatment Tanya
Jk48au
Member
12 years ago
Thanks Carol, it is comforting to know I am not the only one who feels lost after treatment stops. I have just signed up for the Encore swimming exercise course designed for us breast cancer survivors. We are going to spend a week away visiting friends and family, and I agree, I am so lucky to have my husband who has been so suortive right the way through
LouiseTurner
Member
12 years ago
Also, I met Janey and she is an awesome woman. Xxx
LouiseTurner
Member
12 years ago
Also, I met Janey and she is an awesome woman. Xxx
LouiseTurner
Member
12 years ago
Also, I met Janey and she is an awesome woman. Xxx
LouiseTurner
Member
12 years ago
Hi Tanya, I'm not brave. I just persevere. I'm sorry if my photos scared you though. I felt the same when I first saw a women's journey with tissue transfer. Hard as it was I don't have a single regret. Now 9 months on and I am more fit and healthy that I have ever been. I have completed chemo and herceptin, I dodged tamoxifen and have had femara for almost a month. Perhaps an increase in flushes but nothing else reportable. I hope you follow the blog through to the latest photos. I have just one more revision surgery planned in feb then I'll update it again. Good luck to you, take care xxxlouie
Jk48au
Member
12 years ago
On 7th January 2014 I had my last dose of Herceptin. Previously I had my heart scan which has come up to almost normal, but I was sent for a bone scan as a precautionary measure, due to pain in my lower back. Yesterday I was given the all clear, only arthritis there. Next week I will get my port out and then I only need checking every 3 months. All over, so why am I now feeling anxious and tears? I have coped through it all with the help of my husband, family and friends, but now I am feeling a bit scared as I feel alone?? What is going on? It has been very hot here and I hate wearing the fake boob as it makes me hot. I get very itchy in my wound area even though I use lotion on it twice a day. Am I just being a sook or do I need to talk to my doctor? Sorry I am not usually so down
Jk48au
Member
12 years ago
On 7th January 2014 I had my last dose of Herceptin. Previously I had my heart scan which has come up to almost normal, but I was sent for a bone scan as a precautionary measure, due to pain in my lower back. Yesterday I was given the all clear, only arthritis there. Next week I will get my port out and then I only need checking every 3 months. All over, so why am I now feeling anxious and tears? I have coped through it all with the help of my husband, family and friends, but now I am feeling a bit scared as I feel alone?? What is going on? It has been very hot here and I hate wearing the fake boob as it makes me hot. I get very itchy in my wound area even though I use lotion on it twice a day. Am I just being a sook or do I need to talk to my doctor? Sorry I am not usually so down
Jk48au
Member
12 years ago
On 7th January 2014 I had my last dose of Herceptin. Previously I had my heart scan which has come up to almost normal, but I was sent for a bone scan as a precautionary measure, due to pain in my lower back. Yesterday I was given the all clear, only arthritis there. Next week I will get my port out and then I only need checking every 3 months. All over, so why am I now feeling anxious and tears? I have coped through it all with the help of my husband, family and friends, but now I am feeling a bit scared as I feel alone?? What is going on? It has been very hot here and I hate wearing the fake boob as it makes me hot. I get very itchy in my wound area even though I use lotion on it twice a day. Am I just being a sook or do I need to talk to my doctor? Sorry I am not usually so down
Jk48au
Member
12 years ago
Sorry to hear you could not take tamoxifen due to previous dvt, I have also had reactions to various things such as the chemo etc but I agree with you that tamoxifen has been tried and used for many years, and that is also the reason my oncologist likes it. Yes I have had heart function problems with herceptin, but have been able to continue, while others have not been able to. I too feel lucky that I have come through this journey and am able to see the light at the end of that very long tunnel. It is not an easy journey for any of us, and I wish you, Carol, luck with the rest of your journey too. Thank you everyone for your input it has been very helpful Regards Jill