I need my sisters input.

bythece · 04-17-2008, 02:40 AM

I need my sisters input.

<HR style="COLOR: #cc0033" SIZE=1>I need my sisters input.
I just completed # 50 of herceptin. I am on femara for the next four years. What should I expect at the end of herceptin? I am one of those who want to know what might happen and what I should watch for in the future? I have had a lot of joint pain which I am now hoping it is the herceptin not the femara. Can anyone one give me any info on maybe how long before improve would be noticed? Is there anything special that I should ask my onc. about. How long should I leave the port in? Any input of any kind would be greatly appreciated.
It seems that at every stage of the this game, the unknown always makes us a little anxious whether it is good or bad.
Thanks sisters for all the help and support you give.
Linda
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dhealey · 04-17-2008, 04:24 AM

Linda, I finished my herceptin in January. I never had any joint pain related to the herceptin. I was on arimidex, aromasin theses gave me tremendous joint pain. I then tried tamoxifen and was allergic to this. Now I am on femera, I have been on it for about 3 weeks and so far have had no side effects. It took me about a month to get back my energy after finishing herceptin. It is a little scary coming off of treatment, I see my onc every 3 months now and am monitored only by symptoms and blood work. Best of luck to you.

Lani · 04-17-2008, 06:46 AM

http://her2support.org/vbulletin/showthread.php?t=23696
You can find it under the herceptin/tykerb board

It is difficult to figure out what symsptoms are due to herceptin vs antihormonals as even those who are her2+er- who don't take antihormonals normally go into premature menopause after the chemo and are thus estrogen deprived as well

The purpose of this post was to get each to list their type of her2+ bc and whether ER+ or ER- and what their treatment was, then try to dissect out what might be due to the herceptin itself and what seemed to get better after herceptin treatment.

Lots of sisters there, and perhaps a brother

Hope this helps

MJo · 04-17-2008, 06:48 AM

About three months after I stopped Herceptin, I had more energy. I started to feel like my old self again. That included less joint pain. I am lucky in that most of my joint pain is gone after two years on Arimidex, including the trigger finger. I wonder if getting off Herceptin had anything to do with it. (Also losing 50 pounds I gained during treatment.) Herceptin side effects can be mild for some of us, but Herceptin definitely has side effects. I agree that there's a certain nervousness or fear about coming off Herceptin. It faded for me after a while.

PinkGirl · 04-17-2008, 06:56 AM

Hi By
We all recover from the treatments differently. I think you will
have to wait and see how you are feeling. Some feel a lot
better in a few months, others need a full year or longer.
It's important to listen to your body. I didn't do that and I tripped and fell on my face 3 days after my last herceptin treatment, giving me a new set of problems to deal with.

I didn't have joint pain from the herceptin. My joint pain has
always come from the Arimidex. I had my port removed right
away, about a week after my last H treatment.

Now I have check-ups every 3-4 months. I don't have any
tests done, other than mammogram and bone density, unless
I complain about some pain.

Good luck with this stage of the adventure.

bythece · 04-17-2008, 11:35 PM

Thanks to you all for your input. It is hard to believe that I have driven over a hundred miles a week for fifthy weeks for herceptin. I am really excited to put this phase behind me. I'm still hoping that all of the joint pain is from the herceptin and not the femara. I would really like to finish the four years of femara, that would mean that I would be a six year survivor. That in itself would be fantistic.
Debbie and Lani, thanks so much for sharing with me and helping me to get to the next stage.
MJo, glad to know that I might be able to lose so of those extra pounds that I gained. I was fat before but this pound a week thing really wasn't fair. I know that if some of my weight was gone, it would help the knees and ankles a lot.
Falling on my face is something that I would do PinkGirl. I hope that you are bouncing back quickly.
Love to you all and many prayers for my BC sisters.
Linda