How many of us are on 2 years Herceptin?

michele u · 05-07-2006, 11:05 AM

I know we talked about this before, but there have been alot of posts lately. I'm going to go for a 3rd opinion on getting back on Herceptin. If i bring all the posts about the gals getting 2 years, maybe someone will give it to me!

Cathya · 05-07-2006, 11:24 AM

Michele;

I am an advocate of the long term use of herceptin.....most especially after reading of all the late stagers who have been NED for years on it. As stage 3ers we are at significant risk for mets and it only makes sense to use all the weapons available to fight this disease. Good luck, Michele.

Cathy

Becky · 05-07-2006, 12:27 PM

Michele

I am not sure my doctor would give me a second year without results from the Hera trial but since I started Herceptin late (I benefited from last year's ASCO meeting presentation and was within 6 months of my last chemo so I was able to start the Herceptin 4 months after my last chemo) I will be nearing 2 years post diagnosis in September. And it is the first 2 years where the chance of recurrence is the highest so my doctor has agreed to go out until the end of September to cover me for that. I think he is hoping for some results to come out and if 2 yrs is better - we would keep going and if there is no difference between 1 and 2 years, we would stop.

You and many others are doing so well with just the one year that I am questioning myself to go further (the extra 3 months at this point).
But since you are still pursuing the second year, I guess your advice to me would be to take those extra treatments even though it is not a full extra year (and push to continue to the second year).

I hope this helps you. I will see my onc in less than 3 weeks and I will ask him about the full second year. I did it this way because my onc wants a rationale behind what he is doing and he has one with the extra 3 months and taking me to 2 yrs since diagnosis.

Kindest regards

Becky

Barbara · 05-07-2006, 12:43 PM

Michele:

On my request my oncologist game me a second year of Herceptin which I will finish this July. I did not get my first year of Herceptin until I finished Taxol. I had asked my oncologist about getting into a study when I was diagnosed in February 2004 and he did not pursue the study. I started the first year of Herceptin a month after I finished my A/C and Taxol in June 2004.

Barb

michele u · 05-07-2006, 06:48 PM

The more i think about the second year Herceptin, i don't even think it's about the second year per say. It is about needing like a "booster" of Herceptin at different intervals. I believe that since Hercepitn "turns" off the Her2 cancer cells, the question is when do they start up again? No one knows that answer. So we sit here and what, wait? I want to be pro-active and fight for somewhat of a "booster" of Herceptin. I'm fighting for the every 3 months, just because it sounds reasonalble. I think in the future that is what Herceptin will come to. Our problem now is,I don't want to be looking back AFTER a recurrence and think, why didn't i fight for that. We are all here post Herceptin trial just waiting and not knowing what the right answer is. Only time will tell for us

MCS · 05-07-2006, 08:57 PM

Michelle,

I agree with you 100%. I asked the onc re another year and he said that was not done in the us. I told him that it was given in eu for longer but he said we had to wait to the end of my year.

I also would like to get "boosters" regularly after I finish with the year. I will certainly ask for it.

If you need me to sign a request to acs or anyplace to start the wheel, I'm here

XO

MCS ( maria)

jojo · 05-07-2006, 10:14 PM

Y'know, I really hate it when docs are typically willing to give us "new" meds (such as Herceptin) only when WE are stage IVers ourselves. Why wait until so advanced?? Where is the hope???

And who cares about dealing with side effects, when basically fighting for our life?? I, for one, would rather put up with even nasty side effects, if I could definitely HAVE plenty, oh plenty, of borrowed time!

Some "morale booster" it is!!!!! Tsk, tsk! <shaking head>

Oh well! :-(

At least, we could give it a try!

Thanks for letting me vent.... Now I feel a little better!

Cathya · 05-08-2006, 05:32 AM

What about using the Bayer Serum Her2 test regularly to monitor when a booster of herceptin is needed? What if you started getting the test while on herceptin to get a baseline....take it just prior to getting your treatment every three weeks. Once you are off herceptin you could continue with this test on a regular basis and watch for rising numbers which would indicate active disease. At that time a booster followed by regular treatments for some period of time might fight off the disease before it settles into a tumor. I am trying to get the test here but it's a struggle. Are your doctors willing to use it?

Cathy

sarah · 05-08-2006, 05:39 AM

I'm 2 years, 1 month on Hercetpin. I hope to continue with it - as a booster or every 3-4 weeks forever.
Any way to list yourself differently so as to be able to continue to get it? i.e. as possibly metatastic or ?
Good luck. I'd fight for it, I did.
Sarah

jener8er · 05-08-2006, 09:51 AM

Hi Michelle! I am getting 2 years of Herceptin - my first year was up in January and my onc saw no reason to take me off it as I tolerate it so well. I will stay on it through December of this year, which will cover my reconstruction in June and my 2-year anniversary in October. I am stage 3 also, and in the words of my previous onc, my risk of recurrence is "HUGE". My onc has someone who had brain mets and has been on Herceptin for 6 years so I don't doubt that I'll get it when I need it.
Jen

lexigirl · 05-08-2006, 10:09 AM

I agree. If there could be some kind of a protocol for every three mos. to keep the her2 turned down or something. I am at a really high risk so I'd be all for it!

Love,
Lexi

Lauriemn · 05-08-2006, 12:16 PM

My onc also said no to a second year, unless the hera results are good. I have one Herceptin left and don't want to go off.

I was also thinking that getting a dose every 2-3 months would be a great idea. Now, if we could only find an onc who agrees with us. Is there anyone in MN. getting a second year?

Laurie

athena453 · 05-08-2006, 12:26 PM

Hi Michele!

I am pretty much in the same position as you. I am going to push for a second year of Herceptin. Last I mentioned it to my onc, she wanted to wait on the HERA results.

Monique M · 05-08-2006, 12:42 PM

I am in my second year now-- will end in November. I asked my oncologist why I should have to be metastatic to get herceptin on a regular basis. As far as I am concerned, I would stay on it for life if it would prevent a recurrence. I really like the idea of a booster every 3 months-- I will discuss this with him as I get closer to the end of my second year.

Peace and Blessings,
Monique

Barbara2 · 05-08-2006, 04:00 PM

I am also interested in the booster idea after one year of Herceptin. I'll see what my onc thinks.

michele u · 05-08-2006, 04:52 PM

Gina gets her Bayer serum Her2 checked and if it's up she takes a "booster" of Herceptin. She is the only one i know of that does this. she is stage 4, but has been there i think for 6 years. She must know what she is doing!!

Taffy · 05-09-2006, 06:42 AM

Hi,

I am in the UK so my treatment may be slightly different to you ladies here but I am Stage 3c (bc in both breasts and chest wall nodules) and will probably be getting Herceptin for two years or more. I asked my onc and he told me I'd get it 'off and on' whatever that means. Maybe he meant booster doses after the two year mark is passed.

love
Taffy

Rupali · 05-09-2006, 09:25 AM

Hi all,

This is a question for which I have been trying to find an answer too.
I am hitting my one yera mark with Herceptin on May 19th.
ASCO is planned from June 2nd to June 6th and I am hoping that they will have some dat from the HERA trial at the ASCO. Does anyone have information if they would be presenting data from the HERA Trila at the ASCO.

If they do not present any dat from the HERA trial then I guess I am left to the oncologist to decide what to do. I am afraid then they might take me off Herceptin.

Is there anyone in New ENgland area whose oncologist has agreed to give Herceptin for 2 years. I am stage 3 and would love to get Herceptin protection for 2 years.