Finishing up my one year of Herceptin
 

I will be finishing up my one year of adjuvant Herceptin very soon , and was wondering if there were any withdrawal symptoms other than psychological that I should be aware of???

Since I am ER/PR neg I feel like I will be walking that tightrope with out a net!

I also will be finishing up in a few months and this is a very interesting question. On one hand it will be wonderful not to get stuck every three weeks but nerve wracking to be out there as you say without a net!

MaryAnne,
I too am ER- Pr- and had the exact same feelings you are facing now. When I finished my year of Herceptin I cryed. I removed my port the following month and tried to put it past me. At my 2 year anniversary I decided to have a full PET/CT scan just to make sure. Thankfully, all is well so far. I probably will do this every year for peace of mind. It does get easier as time goes on - I am 2 1/2 years now, but, like you, our life line was cut when the Herceptin stopped.
Diane

Maryanne and Diane, I remember feeling that way, too, when my year of herceptin was up. I was so used to going to the clinic every week--for 52 weeks, it was hard to just "quit cold turkey" like that...My last Herceptin was in March 2003, so it's been 3 years already and I'm doing great--(diagnosed in 2001, Stage III, large tumor, 11+ nodes, er/pr-...) although it was scary going off of it at first, it gets easier and easier as time goes on. Remember, herceptin and other treatments will still be there if you should ever need them again in the future...Just wanted you to know you are certainly not alone in your feelings and it does take some time to adjust to life after treatment is over--you know your onc. and nursing staff are just a phone call away if you have any questions, and of course, this website is always a great place to go and share your concerns, fears, etc. I think there are also a few great books out there about this exact subject--coping with life after breast cancer treatment--you can probably find them at your local library and see if they're helpful to you...Congrats on nearing the end of your treatment!

I,too,am finishing my year of herceptin shortly-but I am er/pr+.This past year I could hardly wait for this day to come,but now I am starting to freak out-go figure!I know that Femara and my Lupron shots are nothing to sneeze at but I have FELT the herceptin working on my neck lymph nodes and I pray they don't act up again-scans didn't show any cancer activity,but why did the sensations go away on the herceptin?

Sorry,didn't answer your original question-but I am curious too!
Diana

Stopping Herceptin
 

Hi Maryanne,

I have heard - and may be wrong? that Herceptin stays in your system for 6 months after treatment? That helps me think about going off it.

I thought I read that on this site.

Olivia

I agree with the post above that the wash out for Herceptin is 6 months. I read this recently in the Physician's Desk Manual of Prescriptions. So you are covered for quite some time. Besides your will enjoy the break from treatment so relax,

Today was my last day of herceptin and I asked the research nurse .....I am in a trial at Sloane Kettering ........How long the Heceptin would stay in my system and she told me only 2 weeks!!!! I was also under the impression it was 6 months.

Maryanne


Herceptin has a half life of 20.8 days. This means that half of it is still in your body when its time for the next infusion. This is why you get the large loading dose, so that there is plenty around. So... in another 20.8 days, another half of it is gone and you are down to 25% etc, etc. So, it will take awhile for all of it to be completely gone. I don't have a calculator on me but...

I will say that all of it is not around in 6 months but after 3 months 1/8 is around and in 4 months about 1/18 is around (of the amount of the last dose you got). I think in about 6 months, about 1/70 is still there.

Love, Becky

Maryanne,

all of us taking the one year herceptin were in your shoes. It is hard to stop. The great thing is last week i asked my onc how many of the gals that got the herceptin arm in his practice have recurred. He said NONE!!!!!!!!!!!!!!!!!!!!!!!!

Re: Finishing up my one year of Herceptin
 

did you ask you onc how many had to give up therapy due to heart tox and worse

Re: Finishing up my one year of Herceptin
 

This is 2006

Re: Finishing up my one year of Herceptin
 

Oddly enough, I was not worried about stopping herceptin. I did all I could and felt like I was safe. I stopped December 2nd, had an abdominal CT December 10 that was clean.

May 16 I had an abdominal CT that showed liver lesions.

So, it's good you are worried, maybe that will protect you!

I hadn't realized that herceptin had caused me some aches and pains. They went away almost immediately, and I felt a lot better when I stopped, for a short time anyway. there were no withdrawals. Not even the mental ones for me, but I am rare that way.

Good luck and PLEASE don't let my story scare you; like Michele said, most people don't recur. I knew my cancer was very aggressive - I had a perfect breast in April and in May it was misshapen and dimpled. It was sonogrammed at 2.0 cm and by the time I had it out, it was almost 4 cm. and other areas popped up like mushrooms.

Liver lesions seem to be following the same, swift path. While they haven't been biopsied yet (that happens next week) there is little doubt that it's cancer.

I cannot wait to get back on something!

Re: Finishing up my one year of Herceptin
 

The farther out you get from the treatments, the easier it will get. It was like being without the security blanket you had for a year.

Re: Finishing up my one year of Herceptin
 

My last Herceptin treatment is in 3 weeks. I was just discussing this issue with the nurse at the chemo-spa today. I told her it is going to be so strange not coming in every three weeks and very scary to be losing my security blanket. However, I am really hoping that the end of Herceptin means the end of joint pain :/

Re: Finishing up my one year of Herceptin
 

When I was done with my year of Herceptin it was a bit lilke going without a parachute! In time I felt more and more at ease, and now I am just grateful for the opportunity to have received this amazing (at the time) drug. I got it "off lable" because in 2005 it had not yet been approved for stage 1 breast cancers. My side effects were my crusty nose was gone, no more bloody noses!! The psychological ones faded with time!

Re: Finishing up my one year of Herceptin
 

Re: Finishing up my one year of Herceptin
 

My last herceptin treatment is next Friday. I too have the same feeling, great that I don't have to come in and get stuck every three weeks, but scared about not having the herceptin blanket. Having seen other post on this I know it is a common feeling that we all have and will work its way through like everything else. But hearing that others feel the same way keeps me from feeling like I'm alone.

Counting the days:)