poll/Herceptin

[michele u]

I would like to know how many of us are taking Herceptin off label, in a trial,or are taking it because they are stage 4. I'm stage getting it in a trial. But I'm deciding to maybe fight my insurance co.(thanks to Kim) to stay on Herceptin every 3 weeks when my one year is done. How many of you got your insurance to pay, even though you were not stage 4 at the time?

[michele u]

I'm stage 3, sorry i didn't get that in

I'm stage 3a and getting herceptin off-label for 1 year. I promised I would go off after the year if he would give it to me off-label. I'll be done in March....a scarey though! My insurance is paying for it:-)

I'm stage 2A and am getting Herceptin through a trial for a year. I will be finished in Jan.

Bonnie

I'm stage IV, so I get it forever... hopefully!

Hugs,
janelle

I am stage 2B and ) am getting Herceptin off-label for a year. My year will end June 30, 2005. My insurance is paying for it. My oncologist got the approval. I would like a second year and will try to see if I can get it when I get closer to June. My cancer was HER2 6.9 amplified by Fish.

I'm stage 4, so also will be getting Herceptin forever.

I am Stage IV...getting it as long as it continues to work..the Dr mentioned 5-7 years....
hugs
Sheila

I am stage IV, so I will get it as long as it works. I just added navelbine to my treatment yesterday. I also get zometa, monthly, for the bone mets. Blessings, Lu ann.

Hi there,

I was a little confused by some of the responses. I see that some of the ladies getting Herceptin on trial will continue to get it past the 1 yr mark like on the "b-31" trial. Is there any data on that and please let me know how you got the insurance company to approve of that if you are not Stage 4.

Thanks,
Anne

Hi Michelle - I took Herceptin off label for a year that ended in Aug. Thought long and hard about pursuing it for longer period of time - decided against it. I am very happy with my decision and I know that it is there if I ever need it in the future.
My insurance paid for it - I don't know why but they never even questioned it. I was stage 2b at diagnosis.
Hope this helps! Ruth

Michele,

I was given Herceptin through clinical trial from Nov. 2002 - Nov. 2003. DX at Stage 2A, 1 node pos.

Had local/regional recurrence to axillary lymphs (2) in May 2004.

Placed back on Herceptin (with Navelbine)..finished Navelbine in mid-October.

Will complete Hyperthermia radiation by Christmas. Pet/CT fusion scan to follow. Doctor says at least 1 year Herceptin every three weeks, then she will see what the data is saying. I will FIGHT to stay on Herceptin indefinitely. We will see what the next PET scan says to determine my staging.

Cindi.

I am stage2 and am taking herceptin off label with insurance coverage.

I'm stage 3a and received Herceptin for a year thru a clinical trial. I finished in July '04.

Susan

Sorry to be late on this thread...

My partner Rachel was Stage IIb at diagnosis. She just recently completed 1 year of herceptin off-label. Insurance was no problem. Though it was a problem, at first, getting her PCP to refer her out-of-network to the oncologist who was willing to give her the herceptin. But once that problem was resolved, the rest was straightforward...

Best,
Jeff

Susan,
Were you on the stage III trial by Genentech? If so, you are the first one I have heard of off the trial.
You are doing OK? That's great. What arm were you on? I hope you don't mind me asking these questions. Are you having any TM's done?

If you don't mind sharing, anything, I would love to hear about it. Thanks K

Hi Kristen,

Yes I was in a phase III trial. I was luckily put in the best arm, 4x AC then 12x weekly taxol with herceptin then 40x weekly herceptin alone.

I had very few problems. No runny nose or aches attributed to the herceptin. Tamoxifen was the culprit to cause my aches and pains. I've since switched to Arimidex.

For me the biggest issue was my ejection fraction. My MUGA score started off low normal (55) before any chemo. After AC it fell to 54. After taxol it fell to 51. Does everyone know that if it falls below 50 they will boot you out of the trial? I was very concerned so I had them refer me to a cardiologist. He put me on Accupril and Coreg (the trial had to approve the drugs I was prescribed). I credit these drugs for enabling me to finish out the trial. My EF remained at 51 till the end. Last month I had my last MUGA after being off herceptin for 3 months and it is back to 55 but remember, I'm still on the meds. The cardiologist wants me to stay on them for a year, that's how long they say it takes for the heart to bounce back from herceptin. Then he'll wean me off.

I must say that my hair definitely grew in much better when the herceptin ended. My nails are still pretty crappy though. As far as follow-up goes, I think everyone will be different depending upon your oncologist's routine. Mine does not do scans unless symptoms present themselves. I'm on a three month checkup schedule for the first year or two at which he draws blood for CA 27.29 tumor markers. I do have a surgeon though who will send me for a bone scan at the 2 yr. mark. I am going to see him next week because the other day I felt some lumpiness on my reconstructed side (I had a TRAM flap). I saw my plastic surgeon today and he wasn't overly concerned but said I should have it checked out. Maybe I will be having a scan afterall.

I thought most of the vaccine trials were for those who had never had herceptin. I was most interested in laptanib trials in case I recurred. Have they closed them down? I had heard they weren't going well. Anyway, I am more than happy to answer any specific questions anyone may have. We're all in this together.

Take care,
Susan

Hi Susan -
Was curious to know more about your statement that you heard the Lapatnib trials. What did you hear?

I sure hope your little bumps are only scar tissue or something else benign. A scan any time you can get one is NOT a bad thing! Will put your mind at ease for the Holidays.

Hi StephN,

Two months ago I had heard from someone whose partner was in the clinical trial for lapatinib. He mentioned that the results were not what had been hoped for and that Glaxo was considering pulling the plug on the trial. I haven't heard anything since. I will surely post something further if I hear other news.

Thanks for your well wishes. I am seeing the surgeon on Tuesday. It is my intent to have this dealt with so I can enjoy the holidays!

can someone tell me how to get herceptin off trial in new york city? i didn't qualify for the trial and need to start my treatment asap.