My Dr. said NO to 2nd year of Herceptin

michele u · 11-19-2005, 10:59 PM

I was alittle bummed she would not even discuss it!! I know the HERA trial is going for the 2 years of Herceptin, there must have been SOME indication it would work or they would not have set the trial up like that?! Is there anyone out there that has taken that 2nd year? I guess i'm just being overly concerned about getting the 2nd year. What does everyone think?

11-20-2005, 06:57 AM

I will finish up my second year in December. It was my doctor's idea to stay on. I know he keeps hoping we will hear some data on the Hera trial. I really see him stuggling with feeling comfortable taking me off. I am not even sure if he will want to do it at 2 yrs.
Will your Dr maybe go for a shorter period of time? Like maybe 6mos-them the Hera trial might have some data out.
Take care,
Kim

Becky · 11-20-2005, 09:06 AM

Michelle

I think I posted to you that 3 weeks ago I had to see one of my onco's partners and so I asked him his opinion on the 2nd year. He said that Fox Chase was going to start some trials comparing one year to less than one year (it could be 3 or 4 armed as in one year vs 9 mon vs 6 mos etc). He said there is some discussion that one year may be too much.

However, I saw my onco on Friday so I asked him the same thing. He is not adverse to the second year but is very, very much hoping that San Antonio or ASCO will have some reported results because it makes him feel more comfortable. He did say he would look into it however and said that he would at least take me out an extra 3 months to "cover" my first 2 years (since many recurrences occur within the first 2 years). I will let you know what he finds out because he is going to discuss this with his "buddies" at the University of Pennsylvania. He says he needs to find out more because he has a very young woman who will be done with her first year at the end of April and has some hard decisions to make in regard to each of us as individuals if no results exist. (This onco is a man who thinks and explained he wants to make the right decision for each of us even if those decisions are different from each other).

I will feed you what he says to me. I do know (from the chemo room) who this other woman is. She is only 29 but was very much like you with 30+ affected nodes (versus someone like me with only one affected node) so his decision without results might be very different between the 2 of us. Also, it will be hard to find out what his decision on her is because he won't be able to tell me but I know her name and can schedule my Herceptin when she has hers (she goes on Fridays too - only late in the day because she still goes every week vs me on the every 3 weeks but I can overlap her to find out for you). Also, he might not come up with a decision for a couple of months as he will confer - maybe even call the Docs involved with the Hera trial (this is how he is) to see if they see any differences but I will let you (and the site) know as soon as I know.
Becky

Lauriemn · 11-20-2005, 09:24 AM

Kim, where are you having treatment? What stage are you? I am 1/2 way through my first year and also want to do another year. My onc won't consider it unless something is announced that says another year is beneficial. I am in Minneapolis, if there is anyone in Minnesota getting a second year, I would love to hear from you. Laurie

Alice · 11-20-2005, 09:34 AM

Hi there,

I had to ask my onc to be continued for the balance of the first year. She and my surgeon are both of the opinion that even one year is too much.She is willing to continue for the year mainly because there aren't any studies coming out about less time.I'm glad to see it is being looked into.It will be interesting to hear what comes from san antonio.My onc will be there to discuss my case as part of her study.I wish I could be a fly on the wall there. Well good luck with getting a second year.I think trying for a few months at a time might make your onc more open to continuing. It's worth a try.

11-20-2005, 09:36 AM

IF it is any consolation, Herceptin stays in your system for six months after you stop taking it. Good for those whose doctors are waiting to hear results at conferences, not so good for those who might get side effects from Herceptin.

Hope this helps

Rozebud · 11-20-2005, 02:09 PM

Michelle, I asked my onc last week and was also told no. And she said she doesn't expect to get anything out of HERA that would say differently. In fact, she said that in HERA there was NO consistency on adjuvent therapy, meaning some got AC, some taxanes and some not, some didn't even get an anthracycline! So any data is going to have to be compared very carefully. She is hoping that less than 1 year is ideal treatment. She said she'd hate to put me on it only to have major long term heart issues at 40.

It's so hard to know if I should be pushing for more.....

Sandy H · 11-20-2005, 05:10 PM

I think one of the reasons they will not approve two years is if it is needed for later if may not be there for you. I know my oncologist keeps saying he is afraid of using it all up now and if heart problems arise then later a recurrence, that may mean no Herceptin. For those of us that are stage 3 or 4 and have recurred then we will stay on it and pray that we don't have heart problems. This is what I am hearing from the docs in my area. hugs, Sandy

Barbara · 11-20-2005, 07:28 PM

Michele U:I am Stage 2B with one positve node and my oncologist gave me a second year of Herceptin. I am now in month seventeen and my Muga ejection fraction has only changed from 62 to 61 which is insignificant. My oncologist gave me the second year at my request.

Barb

al from Canada · 11-20-2005, 09:22 PM

Hi Michele,

What a bummer. If you can't find a sympathetic doctors, go to "plan B"
Go through all the clinical trials with herceptin and get yourself signed up for one, if you can find a way to qualify. I don't recall what stage you are but did you finish with the washington vaccine trial??
I always believe where there's a will, there's a way......stay calm and get yourself a plan of attack. In the interim, SABCS is only weeks away and herceptin does stay in your system quite a while,soooo keep taking your olive oil etc. and enjoy the break.
Take care,
Al

Lyn · 11-21-2005, 06:51 AM

From what I can gather, I would have to be one of the most unluckiest going on this board for having everything happen to me, but my luck is elsewhere, I must have the BEST onc there is, I have been on Herceptin for 4 years now and we have an understanding that I will be on it for life, never any discussions otherwise, my LV has always been OK, oh and I should have been dead in about the year 2000. I hope you can find another onc who does what the patient wants and is only concerned about the patient's needs.

Love & Hugs Lyn

11-21-2005, 01:55 PM

This was an interesting thread and thanks, Michele, for sharing your current situation. My onc (here in Ca.) said that the the one year of Hercepting was decided upon by Genetech, the makers of the drug, and that some doctors feel that one year may not be necessary and that this length of time was simply used with the clinical trials. So, I, too, will be interested in seeing if they have trials with less time (9 mo., 6 mo., 3 mo., etc.) as well as the longer time of two years. We're all in this together.

Love,

Vicki (Herceptin for 12 weeks with carboplatin and taxol)

jener8er · 11-21-2005, 02:10 PM

Hi Michelle, sorry your Doc said no to the second year. I am in CA and my Doc just told me last week that he WILL give me a second year, if I want it (which of course I do). He said he can't see any reason to take me off it as I am young and tolerate it so well. My first year is up at the end of January so I will continue every 3 weeks after that.
Jen

Julie2 · 11-21-2005, 02:22 PM

Hi Jen,

Where are you in CA. I live in bay area,CA. I am looking for another oncologist who would give me a second year of Herceptin as mine refused to do so.

thanks,
Julie

jener8er · 11-21-2005, 05:46 PM

Hi Julie, I am in Ventura County in Southern California, just outside of LA. I think that would be a long drive for you! I am really pleased that my doc is giving me a second year - he even has a patient that's been on it for 6 years, and is still going strong after brain mets! So I'll take the piece of mind for now at least.
Jen

11-21-2005, 06:00 PM

Hi Jen,

I'm in O.C. and wondered about your story. Did you get two years (or initially one year), because of your initial diagnosis? What a nice onc. you have!

Thanks,

Vicki
1.5 cm., 0 nodes, er-/pr-, her2+++, grade 3

jener8er · 11-22-2005, 10:06 AM

Hi Vicki. Yes I am er/pr- and my first year of Herceptin will be up at the end of January, then I'll continue for another year. I am considered a "huge" risk, as my lymph nodes were so huge. I only had 4 positive, but the first one measured 4cm, then the next 2cm. My tumor was only 1cm so it was something that REALLY wanted to spread. Anyway, I just recently changed oncs, and I'm glad I did! My original doc hadn't yet decided whether to give me another year.
Jen

Rozebud · 11-22-2005, 05:57 PM

Jennifer - Just curious where you heard that a larger lymph node significantly increases your odds of a bad prognosis? I had a lot (11+) and the largest three were 3.8 cm, and then next two over 2 cm. Is that significantly worse than someone with just 11+ nodes? (LOL....does it really matter???)