Want everyone's opinion

[michele u]

I respect everyone's opinion here on this site, so i have a quesion. I'm considering pushing for a second year of Herceptin. I finshed my one year this past March and I received the Seattle vaccine trial. Now all the talk is one Herceptin trial again and that the Hera trial is doing 2 years of Herceptin, what does everyone think about this? As all of you, my main concern is recurrence. I was stage 3 with 34 pos nodes in Aug 2003. My Dr's really don't think i need it, but i'm considering fighting for it.

[kristen]

Dear Michelle,

I think you are one of the most coraguous, most determined, most educated woman on this site. You knew you were at a high chance of reacurrance and Bless you, you have done eveything you can to look for studies and trials to help you not get there. I have only the utmost confidence that what ever you decide for you it will be the right one. I think you have good intuition and good back ground knowledge and are very articulate and can state your case to get anything you want. So for me looking at you and knowing what I do from these boards about you, If you want them you will get them and if by some chance you don't, I think you will be ok. Wishing you the best in your search for your answer and knowing in my heart that You'll be one of the lucky ones who will be just fine.
Have any preliminary results come out about the vaccine? Has any one recurred while taking the vaccine?
I have a question for you, maybe you can help me. I am er- and had a hyster. Now are my chancer for recur less, or it makes no differece at all because it doesn't interfere with the Her2 protein? just wondering? Thanks and good luck with your decsion. lol k

[Lyn]

Hi, I was always under the impression that this was a life drug? I have been on it for 4 years now, no problems, it would be a bit like a diabetic stopping insulin, if you get what I mean. I will keep having it for as long as it is available to me.

Love & Hugs Lyn

[RhondaH]

"My Dr's really don't think i need it, but i'm considering fighting for it." As ALL of us, you've been fighting this thing all along to keep it from coming back, why stop now? I also agree with everything Kristen said about you...you are one of the "earlier, non met" pioneers and a lot of us look up to you. I hope you don't mind and I didn't attach a name to it, but I TOTALLY agree with you on a post you previously did refering to continuing Herception as maintanance indefinately, but rather than 3 mo than 3 wks ( I SWEAR I read something that Herceptin will stay in your body 6 mo, but don't recall wear, I'll check around and see if I find something) and I copied part of it and sent it to Genentech to see if there were any plans for a trial as such because the logic is there. I would CALL Genentech and ask if they are aware of any trials that you may qualify for. I'm Stage 1 and knowing your Stage 3, I can see all your concern. I'm HOPING that the results of the 2 yr are better than the 1 (all the more reason for continuation of the drug) and that the results will be out by the time my 1 yr is done in Aug. Please let us know what you find out. Good luck and good health.

Rhonda Hoffman

Hi Michelle,
Three weeks ago when I was getting my last chemo treatment. I told the nurse that I would be returning to the clinic for Herceptin (my doctor had told me for 1 or 2 years but was uncertain just how long I would be taking Herceptin).
I asked the nurse, how do they check to determine if the Herceptin is working so that they would know if a person needed to take it for one or two years? and she said "We don't know if it is working. we only know it is working by the absence of recurrence". She went on to say "How do we know if this stuff I'm giving you now (the chemo) is working?" I said I don't know... how do you Know? To which she replied ''We don't know". I asked it they took blood counts or tumor counts to test that the Herceptin is working and she said 'No' they don't test, that they just do routine tests during the course of the treatment such as MUGA and bone tests.
I know that doctors say that Herceptin is the best breakthrough for breast cancer in the last 30 years and that it cuts the rate of recurrence of HER 2 cases in half - so that must mean for the other 50% of the usual number of reocurrences that Herceptin is not effective.
I don't know what this means in actual numbers i.e. How many patients with HER2 typically experience recurrence? I know HER2 is one of the most hostile and aggressive types of tumor and therefore has a high chance of recurrence, but I'd like to know by what percentage your chances of beating it increases by taking Herceptin - any thoughts?
Right now I am grateful to be getting Herceptin and I had my first loading dose on Wednesday last and the only thing I experienced was some chills when the dose was being administered.
Because of the low side effects and as long as my heart stands up to it, I will take Herceptin for as long as they offer it. I hope and pray that it is effective
at keeping the beast at bay for everyone who takes it.
Best wishes,
JoanM

[Becky]

Michelle


Yesterday was a Herceptin day (3 wk schedule) and I was supposed to see my doctor as well. My doctor was chosen to attend a seminar at Fox Chase so I saw the Medical director of the cancer center instead. I had never spoken with him before. My year of Herceptin or rather my last dose will be June 16, 2006. One of the questions I was going to ask my onco was what his philosphy was on giving the second year of Herceptin. However, how many times can you speak at length with another doctor so I asked this guy. He said that soon there will be a joint clinical trial on comparing if less Herceptin gives just as much benefit as one year of Herceptin. The trial will be multi armed comparing taking Herceptin with just the taxol (not going beyond this) to going beyond another 3, 6 and 9 months. He did not know if this would include dense dosing as the A/C would naturally be given before the taxol. He said that there is a lot of discussion on whether one year is too much.

We discussed that one couldn't really ascertain that until the 2 year study results come out. What if they are 85% less chance of recurrence???!! Then what? He said that that is the "European" study and does not combine with a taxane. But, he did say that results could benefit a second year for folks like most of us on the website who could not take Herceptin with the taxane due to the study results not being out yet.

My onco is the director of clinical trials at our cancer center (working with Fox Chase and what they participate in as the cancer center if affiliated with Fox Chase). He is extremely smart, knowledgeble and aggressive. Since I did not see him this time, I scheduled to see him at my next 3 weeker (as I won't have seen him in about 12 weeks if I don't - saw a PA the last time). I am still going to ask him his philosphy but I won't be able to for another 3 weeks.

Just wanted you to know that there is a lot of thinking that one year of ADJUVANT Herceptin may be too much and that there will be clinical trials coming up to see the optimum timeframe. I certainly would like to have a second year but we also have to remember that since HERA is testing one year versus two years, we may be hung up on that second year and that it MUST be better. Maybe someone here knows why HERA chose to test that way. Is there data in a phase I trial or something else that shows that 2 years was better (and what was the status of the women using 2 years in a small phase I - node negative or positive? Stage I or Stage III?) I think you get my point. I do not know the answers to these questions but I wanted you to know what I learned yesterday. I was going to post what I learned tomorrow but ended up "chatting" with Gina this morning and told her all about it too so she may have alot of imput later.

I hope this helps. I will say one thing though Michelle, if you think it will help you - go get it. I never, ever doubt my intuition - not ever.

Love, Becky

When I was on Herceptin AND chemo I asked, "what isn't working?" and the answer was "we don't know"/ This was really disconcerting. I am on Herceptin "maintainence" now but is it really the Herceptin that is keeping the cancer stable or was it the past, successful chemotherapy?

[Esther]

Lyn, I think there is a difference in the guidelines for Herceptin depending on whether you are stage 4 or not. Stage 4 considers that Herceptin will be a lifetime maintenance drug essentially, but for stages 1-3, the use of Herceptin to prevent mets spread to another organ does not have such clear cut time frame indications yet.

The thinking previously was one year of Herceptin for prevention of mets, but that may be in debate at this time.

[mamacze]

Hi Michelle!
This is a real cross roads for you. It is so hard to know what is right when protocol is not clear. Often my oncologist asks for my opinion before we proceed with scans or other treatments. You have to feel like you are doing everything you can to help yourself. Above all else you must have no regrets or "what-ifs"...so if you need that extra year for peace of mind; I say go for it. You know, if I were you, I may even call the Seattle docs for their opinion; before you make a final decision.
You are an angel and you know we all are with you.
Love Kim from CT

[Christine]

Michelle,

I would say at Stage 3 with lots of nodes it would be to your advantage if you tolerate Herceptin well and your insurance will also pay for the extra year. HERA TRIAL, as you well know, is a European study and not sure if your insurance will treat it as an investigastional adjuvant therapy since you already have had the one year on Herceptin. But if your heart EF is normal, and insurence will kick in to help, ask your Onc to leave you on herceptin alone every 3 weeks triple dose for up to a yearif possible. Weekly is probably okayyou will be able to get easier on second thought. It 's a matter of expense. Will the end justify the meams???
We don't know! We're hoping to irradicate the micro-mini-cells through extending the tx with herceptin for another round. Eventually you might want to ask your Onc to do a preliminary her2 serum test to help monitor your progress and then continue every 3 months. It may be an extra tool for him/her for you and all the her2+ patients in the practice.
My very best to you. Regards to your mom. Hugs, Christine

[dskdrive]

Michelle,

The main thing for me is to live my life without any regrets or what if's. I feel that now is my chance to do whatever I can to keep this beast from reoccuring. I am Stage 2, Node neg, her2+, er+,pr+. I am now just over 6 months out of treatment. DX Sept. 04, Lump,chemo, rads. I am on Arimidex. I did not qualify for the vaccine trial. There was no Herceptin in my origional treatment plan. I pushed for it and began treatments every 3 weeks starting Sept. 05. I am satisified that I am doing all I can to win this fight for now.

[Christine MH-UK]

Hi Michelle,

I remember that way back in June somebody posted a piece in which Dr. Edith Perez (as I remember it) talked about the rationale behind giving herceptin for so long as a single agent and she said that it was because the evidence from mice had indicated that six months probably wouldn't do enough, but it wasn't clear how much was needed.

I wonder if they have moved towards cutting down on the herceptin tail because of the very high complete response rates that have been achieved in the trials of herceptin-based chemo.

At any rate, I hope that the HERA (non-US) trial two-year arm announces results early (like Her2 trials seem to do today). I had heard that the control arm of HERA was offered either one year of herceptin or randomisation to a one or two year arm, which would indicate that they might still think that two years has some effect, otherwise why not just give the control arm one year of herceptin as a consolation prize?

34 nodes positive is alot of nodes, so I would go for a second year.

[michele u]

Wow, Thanks to everyone that replied!! I did email my onc and the Seattle Dr.s. Both of them said the same thing, that they didn't think it was necessary now. My onc here said that usually with chemo regimens they decrease the amount of time taking the chemo not increase it. Chemo used to be one year, then 6 month now 3 months. But, Herceptin is different i told him. this is a antibody, NOT chemo. The dr's in Seattle said this would not affect them. They would still follow me. I'm going to see another Onc. in Omaha in 3 weeks to ask her opinion. She has BC too, so i'm sure she will see where i'm coming from. ALSO, i found a program called SPOC that will pay for my Herceptin if my insurance denies it. I think i still have to pay for the administration of the med. I work in the hospital so getting the Herceptin will be no big deal for me. I've been really tired this week, taking alot of naps, so of course, i think its coming back because i was really tired when i found out i had cancer!! To Kristen, I don't think they know if er/pr neg women that have a greater chance of recurrence with Herceptin use. I think the Her 2 dx puts one at a higher risk of recurrence and the er/pr neg dx gives us less meds to take to prevent recurrence. But on that note, when in San Diego at the Cure mag seminar i swear the Dr. giving the breast cancer speech said that Her2 pos and er/pr neg women do better with Herceptin. Did anyone else hear this ever? I will let everyone know what the new onc says about the Herceptin use for the second year. Someone else asked why i'm not on this forever. It's because i'm stage 3 not 4. Thanks again for everyone's opinions!!

[Barbara]

Michele:

I am Stage IIB. I had a 3.5 cm tumor and one positive node. Because I was diagnosed in January 2004 I had dose dense A/C and then four Taxols. After I finished Taxol, I asked and received my first year of Herceptin. I then asked for a second year that began June 2005. My oncologist readily agreed and the insurance is paying for the second year. I, however, have no idea whether the insurance company knows that I am IIB. My ejection fraction has only changed from 64 to 61 which has no clinical significance. If I were you and somewhat healthy I would go for the second year.

Barbara