quitting herceptin

[pkw]

I am new to this group.

I was diagnosed May 2004 at age 50 with stage IV infiltrating ductal CA. It came as quite a shock, as the mammo I had January 2004 was negative. I had six rounds of chemo, started on herceptin in Oct. 2004. I had a L mastectomy in Nov., followed by radiation. I have been on herceptin weekly for a year now. My CT scans have shown the suspicious spots are either static, diminished, or gone. I have mets to the pleural cavity for sure. The liver and gall bladder maybe. My CA-125 has gone from over 100 at diagnosis to 17 as of a few weeks ago. I feel great and am living a "normal" life.

My doctor is considering stopping herceptin. I know that its use may cause heart problems. Since I also have L lymphedema, I am concerned with running out of veins in my R arm, given the weekly infusions. I understand that the type of cancer I have is very aggressive. I am weighing the risks of stopping treatment for now, or continuing it, since it seems to be working.

I would appreciate the comments of others who have faced this decision. Thank you.

[Diane H]

As I understand it if you haven't had heart problems by now you're unlikely to in the future, have heard of several people who are on long term herceptin. You could get a port or consider the three week regimen which would give your veins a break. Best wishes to you, hugs, Diane

[Becky]

I would not stop the Herceptin and get a port or switch to the every three week (I just did this recently and this Friday will be my second three weeker).


I think that after mets, staying on Herceptin is a must.
Best regards,

Becky

[Lolly]

I've been on Herceptin for Stage IV since January 2001, and had a port placed shortly after starting on Herceptin, to save my veins in my right arm for emergencies as I have lymphedema in my left. I'm on my third port(!)because I wore out the first one, we didn't like how the second one was positioned so had it replaced with the third one which is now one and a half years old.

Do your research before going off Herceptin. It wouldn't hurt to get a second opinion. Even after I was considered NED in August of 2001, I continued on Herceptin every 3 weeks and when I eventually recurred in spring of 2004, the cancer was very slow-moving, totally unlike the first recurrence. My onc and I attribute this to the Herceptin continuing to "work" in spite of recurrence. I am starting chemo again tomorrow for my 3rd recurrence which again is acting quite sluggish as it tries to stage a "come back". My onc would only consider taking me off Herceptin if I was NED for a few years, and ONLY if I wanted it.

He has also said that if I were likely to have heart problems, it would have shown up by now, but we continue to monitor with Echo or MUGA every 6 months. At least one person on this site has temporarily stopped Herceptin due to heart trouble, had the heart repair after a few months, and then started Herceptin again with no further problem. So that's possibly an option if you DO develop trouble.

I think long term Herceptin along with great quality of life is doable; Ginger Empey, a member of this group, has been on Herceptin for 10 years! You can read about her by going to the Home page, then to Community, then Member's Stories.

Good luck with your decision, I know it's not easy.

<3,
Lolly

[pkw]

Thank you for your thoughtful response. I had a port for a while. It got me through the rough chemo, but the site never healed and I really disliked it. I had it removed when I had the mastectomy last Nov. I know I may someday need another port. I've had a baseline MUGA, and I have no symptoms of heart problems. I am warming to the idea of herceptin each 3 weeks. While it would be nice to be free of treatment for a while, the risks seem a bit high.

I will check out Ginger's information. I appreciate having a place where I can communicate with other women in similar circumstances. I'll be back in touch.

PKW

[Unregistered]

How do you know you may be running out of veins? I also get weekly herceptin in only my right arm and I would like to continue long term.Are they having trouble with your veins. I don't want to get a port. God Bless- Cathy

[pkw]

Hi Cathy -

I'm not running out of veins yet, although it is something I think about. It would be nice to be free of the weekly treatment for a while, but I am not sure if it is worth the risk. I kind of see the CA as a wildfire we've extinguished for a while. We don't know where or when it will come back.