Would you go for extra herceptin...

Chelee · 04-10-2007, 02:02 PM

if you could? I am at the end of my year but would like extra herceptin trts if I can get them? Maybe its just a security blanket to me...but I sure would feel better if I could get another 6 months of them. That would get me close to the two year mark from my DX.

If you had a choice & could have them...would you want more then the one year of herceptin? (Just curious.)

Chelee

mts · 04-10-2007, 02:19 PM

Hmmm.... this is really difficult and as you know all we (I) can do is voice an opinion based on our own experience. Its just an opinion. Although I was thrilled to have completed my Herceptin, I am also Stage IIA, barely ER positive and PR- I also contemplated asking the onc for a lengthier Herceptin Tx, but his response was Why ? Some people develop an immunity to it and then if you have a recurrence, what will you be able to take? Then again, many women on this board have been taking it for MANY YEARS and are really doing well. My personal opinion is that you need to do whatever it takes to reach a place where you believe you need to be in order to not dwell on the "what ifs". Part of me thinks that if I had positive nodes, I would stay on it. Just remember there is no guarantee and the consideration of heart problems could hinder future tx should you progress while on Herceptin. The other part of me says to get off it and take a break. Heal your spirit and body and realize that you have been through a lot already and you deserve a break. Knowing how difficult it is to make this decision, then why not go half way and only do 6 more months...? This allows you to make a compromise as well as get the benefit of the drug. Don't forget the stuff stays in your system for quite a while once youre off it too.

Maria

Mary Jo · 04-10-2007, 03:02 PM

That is a tough one. My answer would be yes and no. Let me explain now. I am happy to have completed my year of herceptin and was happy when my trips to Froedtert were going to be fewer. Also, like you, I was a bit nervous about losing my "security blanket." But, no, I wouldn't want to be on it anymore. BUT, and that is a BIG BUT, if I were told that my chances of recurrence would be slim to none by receving additional herceptin treatments I'd be the first in line.

At this point though we are told that 1 year of herceptin is sufficient and going beyond that isn't proving to be more beneficial.

Thanks for one of those "interesting" posts.

Mary Jo

Margerie · 04-10-2007, 04:48 PM

Chelee, I went thru this a few months ago. I am currently on 3+ months of extra herceptin. Why? Mostly because I had a very aggressive tumor and I don't trust my body to fight back! I know, lack of faith, once bitten, twice shy. I will do just about anything to stack the scales in my favor.

I know the extra herceptin will only help in one of the following three scenarios: would have recurred/metted anyway, never would have recurred/metted or some cancerous cells floating around looking for trouble are eliminated by extra herceptin. My onc told me at the get-go that my tumor will recurr within 2 years 85% of the time. So that is my benchmark. That will be 6 months from now- 9 extra months of herceptin. I always beleived in as much ammunition in the beginning, as opposed to bringing it out once the cancer has returned.

Unfortunately, we aren't going to get the HERA results for at least another year or two. So far I am doing very well, getting echo/MUGA every 4 months.

It is hard to give up the herceptin. I did fall apart a little when chemo was over. Never would have thought that would be terrifying- but it was.

One heck of a ride- ladies!

Becky · 04-10-2007, 04:57 PM

I took 18 extra weeks of Herceptin to get me to 2 years from the date of my surgery. I was able to negotiate this fairly easily since I started Herceptin "late" - ie: 4 months after my last chemo (due to the ASCO meeting announcement of the adjuvant trial results). Because of this, it was easy to get 6 extra (every 3 wk) treatments since over 70% of recurrences occur within the first 2 years from surgery.

I was glad to be done though. The weirdest was after the last one and the 3 weeks came and I was "supposed" to go but didn't. After that, I didn't give it an extra thought.

lcuster · 04-10-2007, 05:20 PM

I was fortunate enough to have completed two years of Herceptin on April 4, 2007. This was a personal choice that I made with my doctor. One year is the current FDA recommendation; there is no indication that 2 years are better. I knew how my body responded to the Herceptin. I have continued my echo's every 3 months while on the Herceptin. I exercise as much as possible on the treadmill to keep my LV ejection fraction up (55%). Now I have to think about when I want to get my mediport out. I wish the best!

Jean · 04-10-2007, 07:20 PM

Dear Chelee,

As Becky noted the first two years have the highest average (70%) of recurrance. Since you had your surgery in 1/06 and you did not have
radiation maybe your dr. will consider extended time on herceptin.
If you go in with printed documentation and stats about the 70%
recurrance ratio and then explain how you feel that under normal
conditions you would have received additional treatment with radiation.
You just maybe able to have the dr. agree or a least bring it to the
medical board for review. Even 6 months would be a benefit.

Let us know how it goes. But I would recommend that you go in
with good reports to prove your position.

Good Luck!
Hugs,
Jean

geraldine · 04-10-2007, 07:51 PM

Today I met with my Oncologist to discuss wether I should remain on Herceptin.
DX July 2001 Grade 3 agressive Tumour....
Mastectomy, August 2001 x 3MTHS A/C +ADJ CHEMO.. TAXOTERE/ FOLLOWED BY 1YR tAMOXOFEN (DIDN'T WORK)
Secondary appeared on chest wall ( same side) ..Vinoralbine/Herceptin...
Tumour dissappeared rapidly

Prognosis.. Stop herceptin and the Cancer could come back...!
Prognosis... Keep on with Herceptin / and the Cancer could still come back....
I have been on Herceptin only, for 3.5 yrs..( They tell me, I am the longest on this drug, in the West of Scotland...Therefore, they don't know the long term effects.
I am now being prescribed with Femera (Letrozole)

Any sugestions or info, no matter how small, would be gratefully appreciated

Linda · 04-10-2007, 11:34 PM

Chelee:
I am also stage 3a, very agressive path (er/pr-) and a worried onc. Even so, my doc called her experts at the end of my year of herceptin and was told that there was no data to support more than one year on herceptin. She talked to one of the docs who headed one of the original studies.
Yes, herceptin is a pretty easy drug, but it can have serious side effects and I think it's worth thinking twice before extending beyond one year, unless of course, you have distant mets.
Also, I have to tell you, I really started to feel like my old self once I stopped the herceptin. I got my port removed and have just felt better and better.
My onc also said she would let me know if the data changed or there was new evidence that more herceptin was better -- I know if that were the case, she would tell me to start again.
Linda

Chelee · 04-12-2007, 12:28 AM

Some very good points were made, & many of which went in to my initial decision making on continuing herceptin or not. But since I am a stage III'er, 5 positive nodes, & no radiation I feel like it might be a good idea. Plus, now a yr later from my DX I see most with a similar DX or less had AC, followed by TH. (Some with DD.) I was *never* even given a choice in my trt plan. I was given TCH...& I missed an entire month of it since I landed in the hospital. TCH is good, but I *should* of had a *say* so in what trt I went with. I was told they wanted NO inturruptions when I started my chemo yet I missed an entire month. So I am leaning towards extra herceptin trts if they will let me have it? (I'm glad to see a few of you had extra trts of herceptin also.)

I was due herceptin this last Monday but my onc AS ALWAYS played her little game & ignored my request. I went around her today & spoke with someone else thats been trying to work with me. It sounds like I *will* be able to continue on herceptin. I just wish they would of let me have it this last Monday that way I wouldn't have to start back up with a loading dose if they say yes. My ECHO's have been good since I started. (Knock wood.) My most recent one was 69%. As several of you mentioned the high 2 yr recurrance rate is a big concern to me. I would like the herceptin to get me through at least another 8 months which would complete two full yrs. I should hear no later then next Monday if its ok to continue. I feel its a good decision since nothing about my path report is good. So I will take all the help I can get. Thanks so much for all of your thoughts on this...it was very helpful.

Chelee

Becky · 04-12-2007, 03:10 AM

Chelee

Just wanted to reaffirm that the recurrence rate is not that 70% of us will recur but that of all recurrences, about 70% occur within the first 2 years (this includes local recurrences too)

janet11 · 04-12-2007, 06:00 AM

(*whew*)... thanks for the clarification. Had me worried (*smile*).

Janet

Chelee · 04-13-2007, 12:25 AM

I was laughing when I read Janet's reply. That's exactly how I felt after reading Becky's post. I too want to thank you for the clarification on that one. lol (I've been under alot of stress lately so I didn't catch that at first.) That's my story and I am sticking to it.

Chelee