yes or no to herceptin

help please I saw my onc today and he brought up the herceptin question before me.. I finished cheomo (4 A/c) in March of 2004 and rads in june 04 the only treatment to date has been tamoxifen since I'm not in menapause. He said that the Dr.s where not recomending herceptin for someone this far out from chemo and that if I wanted I could try to get it and he's talking about insurance coverage but does anyone have any info about what good it would do me now being so far from original treatment? I want to do everything I can but I just don't know what to do about this. Also what tests do you all have at you scheduled checkups( oncology ) all mine did was ask how i was feeling blew me off when I said very tired and said That I "looked great" felt my neck and breasts and listened to my lungs . How can he find anything without bloodwork? Am I wrong? thanks Leslie

I finished my original chemo in Sept 2004. I had Taxotere/Carboplatin and Herceptin every three weeks. I followed with radiation until the end of Nov 2004. In december I started back up on Herceptin every three weeks. I have been NED since the end of original chemo. I still get blood work every three weeks along with Herceptin. I get PET scans every three to four months. My dx was stage IV HER2 +++ er+/pr+ 8/16 nodes+ and a spot on my liver. I have read about people who go off the Herceptin and the cancer comes back so they go back on and it works. There are people out there that have been on Herceptin for 10+ years and it is working. I guess everyone has to make their own decisions and choose what path is best for them. Take care and do what you think is best. Keep asking theses ladies questions. This site is very knowledgeable and up on the very latest. Sally

Hi,

Be your own advocate. You need tumor markers at the least and getting scans eveery 6mths to 1 year is not a bad idea. Unfortunately, there is no "standard of care" but a careful onc will listen to your worries. Tell him you are worried about being tired and want to have some tests. There is nothing to be afraid to ask. As far as the Herceptin, they say you can no longer have it if you are 1 yr out of chemo but look around , you may find another onc who will give it to you if you really want to have it.
Good luck and best of health,
Anne

Hi Leslie.
I am a year out of chemo also, talked w/my onc. last week, he suggested I NOT take herceptin then took my case to the "tumor board", I spoke w/my onc. nurse this past weekend, she said the "tumor board" would like for me to take the Herceptin for a year.
To mimic the earlier post, you have to do what's right for you. I see drs @ The James in Columbus, Ohio if you want more information.
Hope this helps.

Medicine is one place where you don't necessarily get what you pay for (and we pay quite a lot), and to get what you need it takes being educated and assertive. I am stage 1, HER2+++, 3 years out from chemo, and NED, and still marker and other blood tests are standard at every visit for me and will be until I am 5 years out. I'm many miles from my oncologist and see a local PCP most of the time.

I have not yet visited with my onc or my PCP about Herceptin, but my every-6-month checkup is coming up and I wanted to allow some time for professional discussion and interaction about the Herceptin results before I check in with my onc. I personally don't find it very reassuring to be out 3 years, and I think the data they have on HER2's and recurrence is questionable, and that basically "time will tell" -- at OUR expense.

I was dx Stage IIb in March 2003, her2+++, er/pr+, 1/12 nodes+. Single mastectomy followed by 4 A/C and 4 taxotere. Because I was premenopausal, I had my ovaries removed so I can take femara instead of tamoxifen. I was 40 with 2 kids and wasn't planning on having more kids. Since end of chemo treatment, I see my onc every 3 mos. for bloodwork/tumor markers. Each visit he thourougly palpates my breast, my reconstructed breast, neck, collar bone, arms, stomach etc, as well as listens to heart and lungs and ALL my concerns. I get chest xray, lung, pelvic, ab CTs and bone scans yearly. Additionally, my gyn. does a pelvic/breast examine every 6 mos and my breast surgeon examines me every 6-9 mos!!

After LOOONG discussion with my onc. and dissecting the research with him, I will not take Herceptin at this time.

It is a lot to sift through, but necessary to feel good about your decisions.

Cheryl

Hi Cheryl. If you are IIb and HER2+++ and ER/PR+ like me and have decided it makes sense not to do Herceptin now, and I'm stage I node-negative, maybe there is some rationale to being left out of the group who can access Herceptin. I'm hoping I can find an onc who would spend the time to help me go over it to get a better understanding.

For me the numbers on recurrence don't seem all that reassuring. A report I have from 2004 states that 17% of those with bc (not limited to HER2) recur within the first 5 years; so that means 83% recur after 5 years. So I don't think much of the rationale that most of us who do recur, recur within the first 3 years. Nobody has been collecting data long enough or accurately enough on HER2 positives to convince me that most of us who recur, recur within the first 3 years. And the same report I have tells me that between 40% to 50% of those who are in Stages I through III do eventually recur, although that number is improving. That also would mean that 50% to 60% of bc survivors in Stages I through III do not eventually recur.

I think there is a pretty good chance that all that the ugliness of the chemo I had could turn out to be just what I was promised it would be -- a way to delay recurrence but not stop it.

But I wonder what convinced you.

AlaskaAngel

Alaska Angel,

Yes, I too hope you can find an onc who cares and can answer your questions. Mine always runs 2 hrs. behind because he gives as much time as needed for each pt. ( I always arrive 1 1/2 hrs. after appt. time). I feel it is important to trust and believe in your dr. Although it is the pt. responsibility to know options and question tx, the dr. is the expert. I come from an allied health background in pediatrics and although it's is not a life and death situation, I DO appreciate the parents who research and discuss treatment options, but DO NOT appreciate the ones who TELL me how I should treat their child. If they think it is as easy as reading internet articles/research, then why did I spend 6 yrs. + internship + yearly cont. ed. to practice? I have the same philosophy with my docs.

Although not a dr. by any means, my training included critical reading of journal articles. I wish I could give you all the specifics of my final decision, but way too complicated in writing. In general, I saw too many inconsistencies among studies and professionals to warrant treatment at this time (2 years. post end chemo). I received very aggressive chemo and the 1+ node was encapsulated. I am hoping I am one of the 50-60% without recurrence!!

Bottom line, cancer does not consume my life. When the Herceptin issue made front page, I again experienced less sleep and more anxiety. I am comfortable with my choice and have decided to put Herceptin to rest and enjoy life again without this voice in the back of my head.

Hope this helps,
Cheryl

thank you all for your thoughts I will talk to my pcp in a couple months and have hims run the blood tests and also ask about stopping my periods. My oncologists feelings about herceptin was that I am too far out and there is no proof thar it would do anything at this point and that is what I felt but I guess theres always that if only worry but I 'm trying not to go there. god bless you all leslie