Re: I had a break after 4 years
 

Hi
My advice would be to have no more than a short break for up to 3 months and then go back on it. I went off it after 4 years and 8 months later tumours came back in the liver. I am just about back in remission after 3 tx of abraxane and herceptin, and will stay on it now indefinately.
Jackie (down under)

Re: 3 years + on Herceptin, Why
 

14 years and counting for me~~~

Re: 3 years + on Herceptin, Why
 

Hi udith3
Great news and so inspiring. I am coming up for my annual scan so lovely to hear about your story. I am now over 8 years on herceptin and have just booked to visit San Francisco (I live in Scotland) so looking forward to it but of course travelling to USA is a problem as I have no health cover on travel insurance for breast cancer & another long term condition I have. I have decided to go for it - life too short. Thank you for posting

Re: 3 years + on Herceptin, Why
 

WOW Thank you for posting this, I could read these posts all night long. They give me so much hope! Thank you, Thank you!
My daughter has just finished her last chemo session Docetaxel (Taxotere®) She is Stage IV with mets to her spine. We have been told that she will be on Herceptin along with Zemeta indefinitely every 3 weeks. I have read some on Herceptin but it so fills me with joy when I read about the amazing people here that are still going strong after so many years.
I do have a question though. My daughter is only 22 years old, she is hoping and praying that one day she will be able to have her own children, however first her periods need to start again after the effects of the chemo and secondly will she ever be able to be off Herceptin long enough to carry a child?
Any information would be very much appreciated

Re: 3 years + on Herceptin, Why
 

Vonny,
I have a friend whose 27 year old daughter was diagnosed with breast cancer. I believe she located a very specialized oncologist who focuses on fertility issues with young breast cancer survivors.

I believe this Oncologist has offered up hope for a future with children. But...I encourage you to seek out someone with this specialized area of study. They are out there!!

BTW...my friend's daughter lives in Dallas, Texas if you would like further information.

Lori

Re: 3 years + on Herceptin, Why
 

Thank you Lori, we live in the UK so not sure that is available but I will look into it. I think mine and indeed Lorna's concern is that she has secondary and was told she will always be on Herceptin, I just wondered that if her periods do return will there ever be a time in her life when she will be able to be off Herceptin long enough to carry a child?

Re: 3 years + on Herceptin, Why
 

I was given Herceptin weekly for over three years. Recently, my body became immune to it and my cancer counts started going back up and my Onc. took me off Herceptin and put me on Tykerb and Xeloda. At some point, he will continue Herceptin again. Perhaps after i have taken Xeloda for awhile. I don't know how long he plans to keep me on these two drugs. I'm only on my second course.

Re: 3 years + on Herceptin, Why
 

You might consider monitoring your serum HER2. Not much published regarding value in your situation, but may be helpful. Take a look at www.hertestonline.com

Re: 3 years + on Herceptin, Why
 

Hope someone here can answer my question. I had a local recurrence 3 years ago; had surgery and radiation and have now been on Herceptin for 3 years. My oncologist says I will be on it forever and I'm confused as to the benefit since the recurrence was local not metastatic.

Re: 3 years + on Herceptin, Why
 

Although I am stage 4, I think a local reoccurence is a "red flag". Did you have herceptin the first time? I have read a number of posts of women who have stopped herceptin and had a reoccurence within a year. As long as your E.F. is within the normal range, as my oncologist said, lets not mess with success and continue on herceptin.

Re: 3 years + on Herceptin, Why
 

I had double mastectomy in 1986. No followup was done then. Early in 2001
I was diagnosed with Stage 4 metastasis. Had one round of chemo and was then started on Herceptin. So this will be my 12th year on it. I had brain tumor in 2009. Zapped with gamma knife. Take MRIs since then. Will cut back to 6mo instead of 3 on them this year.
PET Scan each year. MRIs have all been NED (no evidence of disease) and PETs have been NED for the last 2 years. Lucky me. Developed lymphedema in 2006 from having someone surprising me by taking blood pressure in both arms. (I was distracted by talking to to the cardiologist at the time.) Last Oct. I talked to Oncologist about quiting. (I was the first patient he gave Herceptin to in 2001. He was saying I could stop if I wanted to. I said, "If it went from my body to my brain, what is keeping it from going from my brain to my body? (Should be noted I have NEVER had a marker in all these years so how would I know of recurrence?) He said, "I knew you'd say that" and I continue with my herceptin infusions every three weeks. I see from these many posts that there does not seem to be a consistent answer to the "when to quit" quandry.

Re: 3 years + on Herceptin, Why
 

So hi, I am brand new to the site. I did not know herceptin goes on and on...I am new to all this...my Dx was 1/22/13 with lumpectomy& SNB 2/1/13. I had CAT Scan, bone scan and MUGA. I receive my port tomorrow and first of 6 treatments of TC-H the day after tomorrow. I was Her 2+++ stage IIa grade 3 invasive ductal carcinoma 3.5 cm an an additional 1.5 cm DCIS. I was told berceptin was for a year...why more?? Today my Onc called to say I need an ultrasound of my pelvis because CAT scan shows something that looks like a cyst but they can't tell. Should I worry?? I am 54 (on Sunday) and went through menapause as all this lump in my breast stuff started last May. Lump first Dx in June as a cyst but in December had grown so January FNA showed IDC. I had negative SNodes so this thing on my ovary should be nothing, right?

Re: 3 years + on Herceptin, Why
 

Hi iluv2scrub,

Herceptin is usually given for a year. Some patients (myself included) stopped early because of heart issues, while others (such as most stage IV patients) stay on it as long as it is needed.

When I was told to have an ultrasound after a CT scan of the abdominal area (mainly the liver) in 2009, I was sure they had found 'something'. Turned out it was to confirm the diagnosis of hepatic hemangioma - a benign cluster of blood vessels in the liver and is usually fueled by estrogen.

It's pretty hard not to panic when we are called back to have more tests done - especially at the beginning of our cancer journey. I remember all the tears I'd shed in the waiting room, all the 'SOS' I mailed/e-mailed home... But my 10th anniversary is coming in less than 4 months ...

Hang in there. Ask any questions - someone will find the answer for you. And yes, there's always an explanation for whatever we are going through!