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Old 02-10-2004, 05:44 AM   #1
Merridith
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Is anyone out there receiving herceptin outside of a clinical trial in Canada for early stage breast cancer? Am planning to volunteer for the trial........ but if am randomized to the ""standard treatment"" arm" would like to know if I can get it. (Would quit the trial). Can you give me any details? I live in Vancouver.
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Old 02-11-2004, 03:57 AM   #2
Christine Adams
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Hi Merrideth

I have no immediate answer to your question but I want to thank you for posting it. I too have signed on for the HERA trial and have yet to learn which 'arm' I will be in (have to finish radiation first -- start on friday). I am also in Vancouver and plan to fight for herceptin 'off protocol' if I am randomized to the control group. Please let me know what happens to you and I'll keep you posted on my situation. Who is your oncologist?

Cheers

/Christine
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Old 02-11-2004, 04:49 AM   #3
jeff
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Good luck with the randomization. If it doesn't work out--and please excuse my typical American ignorance of Canadian geography--would it be feasible to explore the her2 vaccine trial at the University of Washington? I do have the right end of the country no?

Best
Jeff
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Old 02-11-2004, 06:59 AM   #4
Christine Adams
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Hi Jeff

Your American ignorance is forgiven (~grin~). You are quite right Seattle is a mere hop skip and jump away from Vancouver. I am quite interested in the UW vaccine trial but at least at this point I do not qualify since my nodes were negative. Regardless I am considered extremely high-risk due to my age er- status her2+++ grade 3 tumour and questionable margins (further surgery not possible as it is close to the chest wall). Perhaps they will consider expanding the trial to include high-risk node-negative types like myself... one can but ask...

Cheers

/Christine
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Old 02-13-2004, 06:15 PM   #5
Merridith
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Hi Christine:

My oncologist is Dr. C. Bryce and she is based out of the BC Cancer Agency. I have just finished the first round of 8 schedualed rounds of chemo. I won't be finished for a number of months. I am on an accelerated program taking the chemo every two weeks rather than once every 3-4 weeks as is normal. I have to self-inject GCSF (FREEK-OUT!!!!!!!!!! Yuk!).

I wasn't sure if I actually wanted the herceptin at first but the more research I've done the more I can see why she so strongly suggested that I take part in the study on the chance that I would be on one of the receiving arms....I will let you know what happens to me. One thing I have discovered..........herceptin is stunningly expensive.
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Old 02-14-2004, 02:03 AM   #6
jeff
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Hi

Yes herceptin is ridiculously expensive. But I know that Genentech (who makes it in the US it might be different in Canada) has a generous patient assistance program--as long as you make less than 75 000USD a year. It's worth checking witht the Canadian maker to see if they have a similar program...

Good luck
Jeff
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Old 02-14-2004, 07:05 AM   #7
Christine Adams
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Hello again

I assume you're on AC followed by Taxol? I know several women who are on this regimen and if its any comfort the Taxol is supposed to be a breeze after the AC (let's hope it is for you too!!). I was on FEC and due to low neutrophil counts also had to self-inject GCSF (neupogen) -- I found the injections got much easier over time (it hurts the least in your belly) and I was kind of proud of myself for doing it.

I had my first radiation yesterday -- the radiation therapists at BCCA are wonderful and again after chemo radiation is SO easy! I will keep you posted on my herceptin situation. I was really reluctant to sign up for the trial at first too but like you the more research I have done the more I want it.

Maybe we'll run into each other at the Cancer Agency sometime...

Cheers

/Christine

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Old 02-14-2004, 04:19 PM   #8
Merridith
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Hi Christine: Have tried to email you directly a couple of times but I think that there must be an error in your address because it keeps bouncing. Your guess is correct about the chemo regimen that I'm in. So far I haven't found AC that bad. I had some almost imperceptible nausea just prior to eating times and a bad taste in my mouth. That's about it. The rest of the time I have spent skiing studying and entertaining mounds of sympathetic guests. Haven't even lost any hair yet. Hope it stays that way.
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Old 02-20-2004, 11:56 PM   #9
bry
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What about East Africa? I am still in the trial but if I want to keep my job I need to travel 11hours to get herceptin in Europe every 3 weeks. I am 33 (fighting BC from 1997) bread winner with 2years old wonderful healthy daugther born in-between 1st BC and reccurence. Happy to get any advice how to get/buy herceptin. Cheers Bry
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Old 04-09-2004, 01:29 AM   #10
Lauren
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I took herceptin off trial in the US. New York to be exact. I finished two weeks ago. 3 months AC 3 months T plus H. Another year of H. Radiation in there too.

I had two positive nodes and a 2.5 cm tumor. ER/PR positive.
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Old 04-11-2004, 10:55 PM   #11
Donna
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Hello. I read that you were able to receive herceptin off trial in NY. I am in the ""control arm"" of a study out of Phila. but am interested in where you were able to get treatment with herceptin off trial in New York. Thanks for your help. "
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Old 05-26-2004, 01:34 AM   #12
Vicki Z
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Hi Christine

Like you I am node-neg and her2 3+. I've been FAC chemo for the past 5 sessions and this week begin taxol-carboplatin (4 sessons every 3 wks.) and then 12 weeks of herceptin. I'm grateful that my med.-onc. has decided to follow up with this...to me it's added insurance for an aggressive tumor marker.

Good vibes to you up North

Vicki Z in So. Cal.
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Old 06-04-2004, 11:41 AM   #13
Rose
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I am currently on a clinical trial wit AC for 4 cycles followed by Taxol and randomized to one year of weekly herceptin for 1 year. The clinical trial does include node negative women that are at high risk.
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