Any Stage II or III' Ladies getting Herceptin beyond Year Two

Barbara · 06-27-2006, 08:03 AM

Hi:

I can remember from previous posts that there are a few Stage II and III gals getting Herceptin for longer than two years. I was wondering why your oncologist pursued this uncharted course. Was it because he or she felt that your odds of re-occurrence was so high that there was nothing to loose and possibly something to gain or was it because you agressively pursued longer treatment beased on the re-occurrence curve for hormone negative cancers?

Barbara

Bev · 06-27-2006, 09:18 PM

Hi Barbara,

I'm stage 2 with a supposed 1 yr herceptin ending Nov. I'm posting to keep this thread alive and am curious as to what other early stagers are doing. So far I haven't seen hard science one way or the other. Thanks for asking. BB

Monique M · 06-28-2006, 11:24 AM

This thread is timely.
I was dx on August 30, 2004-- stage IIB.
Lumpectomy on 09/07/04 and bi-lateral mas. on 09/16/04.
Oct of 2004 started 4 rounds dose dense a/c
December 2004 started taxol and herceptin.
February of 2005 went to herceptin alone every 3 weeks.

When one year of herceptin was up in December of 2005, I asked my onc for a second year of herceptin. He agreed.

I am now considering stopping. I feel like my body is screaming to me-- enough! I had an infusion yesterday and ended up with a rash despite the benadryl. My husband looked at me this morning and out of the blue said, I think it is time to stop the herceptin. I have been thinking the same thing for over a week. So I will speak with my onc.

While I am a little stressed to be flying the trapezee without my herceptin net, I feel led to stop. I hope I will not be posting in the future and saying it was a mistake but only time will tell (and then, we can never be sure, can we?)

Thanks for letting me vent.

Monique

Susan Rankin · 06-28-2006, 01:08 PM

Hi,

I am Stage 2 and my oncologist said one year. I don't feel secure being without it but he said you have the Femara protecting you from a recurrence. I had one positive node, the sentinel, and the tumor was 1 cm.

I finished weekly Herceptin for a year on June 20 and I am acutally starting to feel better. I hope it continues. I will post regarding how I am doing without it.

Susan

Becky · 06-28-2006, 01:23 PM

I finished my year of herceptin on June 16 but I will be receiving 5 extra (every 3 week) treatments to actually end (last one) on Sept 29. This will take me to 2 yrs past diagnosis (Sept 1) which is the greatest time of risk for recurrence. My onc readily agreed to this but not to another full (second) year due to lack of results via the Hera trial. So... I was able to get 15.5 months of Herceptin but no more (unless there are positive results between now and Sept 29).

Kind regards

Becky

PS - I was Stage 2. 1.9 cm tumor with one minimally involved node. ER+ Pr - and I am on Arimidex as well.

geraldine · 06-28-2006, 06:02 PM

Hi Barbara,

I have had the good fortune to have been on Herceptin, since december 2003

I was dxd her2+++ 22/24 nodes in 2001.( Mastectomy left breast ) Secondary on the breast wall, same side 2003.

My onc. wanted me on Herceptin indefinately and that has been the case till now.

I might be coming off Herceptin, because, I was told, I am now in unchartered territory, ( I have told them to look at this forum for all the info they need ) they can't monitor me while on Herceptin. After 3 months off, they will give me all the checks, hopefully all will be well and I can get on with my life.
Should my cancer come back, I will go straight back onto Herceptin but I am still wary about coming off it.

Here in the UK, I am one of the lucky ones. If this had happened to me just one year earlier.... Well anyway...I'm here now and that's all that counts

God Bless to all
Geraldine x

06-29-2006, 12:13 AM

Very opportune this thread.

I was diagnosed in February 2004.
Found two underarm nodes myself. Never found primary tumour but had 4/11+ axiliary nodes plus at least two more in chest wall.
Surgical removal of underarm nodes end FEB 2004.
Taxotere 3 weekly and Herceptin weekly from March to July 2004.
30 rounds of Rads to breast and chest wall Sept/Oct 2004.
Back on Herceptin 3 weekly from October 2004 and have continued since.

Not sure what my stage is but probably III. As I understand it, stage IV is when you have another organ affected.

Am seeing my oncologist for my 3 monthly visit again today.
We have the discussion each time.
I am tending towards staying on given the aggressivity and nodal spread of my original tumours. At least until there is more information from the trials. Although there seems to be very little for us in between people.
If I left the decision to her I *think* she would take me off but she is not pushing me. She has other considerations like cost to take into account too.

My feeling is that the risks and inconveniences of Herceptin are less than the likelihood of recurrence.

romo9 · 07-02-2006, 10:33 PM

Am just about to start 2nd year of Herceptin on my insistence ( and my money as no funding in Australia unless you have secondaries). I had 3mm tumour 18/25 postive nodes Her+++. A/C + Taxol + rads then Herceptin. I know there is no concrete evidence but as I told my Dr. how close do you have to be over what seems to be a very fine line!
He made a fair point though - I may just be delaying symptoms for an extra year - I told him a year symptom free is a lifetime for a 7 year old son. RO

07-03-2006, 05:39 PM

Hi - I have been on Herceptin 18 months after stage 3 breast cancer in early 2005. I had neoadjuvant therapy with Taxol +FEC + Herceptin, double mastectomy, 6 weeks radiation. My tumor was 6.3cm and many positive nodes (will never know for sure how many due to neoadjuvant therapy), but they aspirated 4 at diagnosis and all were positive. My doctor has agreed to keep me on Herceptin for 2 years, but now I get a very bad rash on my legs day 4 or 5 after Herceptin and I feel like my body is telling me it has had enough. Any one else with a rash like that? Anyway - I am starting to believe that your body may know when it is time to stop and am considering stopping due to this terrible rash. I am very afraid of stopping, because I know how great this drug is performing. Maybe I could convince them to switch me to tykerb?

Bev · 07-03-2006, 09:47 PM

Hi unregistered, I had a flukey arm rash that only occurred 2X.
It may not maean anything. BB

tousled1 · 07-04-2006, 11:11 AM

I just started Herceptin but asked my oncologist last week about being on it longer than one year. Her reply was that it is not proven to be any more effective but if any of her HER2 positive patients wanted 2 years of Herceptin that she would give it to them.

I am waiting for the results of the study on Herceptin for 9 weeks.

Kim in DC · 07-05-2006, 03:19 PM

I have been on Herceptin since Aug of 2004. Since I had inflammatory BC, my onc has pretty much said I can stay on past 2 years as long as my insurance pays and my heart stays healthy

Kim in DC

hieaschlegel · 07-05-2006, 07:14 PM

Hi Ladies,
Interesting reading - was not aware of this website till I googled: leg/toes
cramping. Am completing my 1 year every 3 weekly Herceptin Tx. -
only started Tx. after end of 2nd year diagnosis. Routine mammo July 2003 revealed a 1.5cm largest diameter cancer on upper outer right breast. Sentinal node lumpectomy Aug. 2003 - StageII/IIIA with lymph nodes: 8/23,
Hers+++PR borderline. Chemo: CATaxotere followed by Radiation Therapy
completed in April 2004. Started Herceptin Aug 2005 after Insurance approval. To-date all CT/PET negative, no cardiac side-effects and hoping to remain so. Can only hope and pray. Good Luck to all.
Cheers, Irene

Barbara · 07-07-2006, 01:53 PM

Hi:

I would like to thank everyone who responded to this post. I met with my oncologist Wednesday and although I am only Stage IIB, grade 3 tumor, ER/PR - and Her2 positive 06.9% we agreed to continue Herceptin beyond Year Two at my request. My oncologist had asked me to bring my rationale for continued treatment. I brought studies on reoccurrence rates. One large study showed that on node positve women the years of highest reoccurence were year three (13%) and year four (14%). I also had the labs that he had ordered that show I have a high Her2 level in my blood which could mean I am at high risk. I also had a study that showed the reoccurence curve for HER2 women that were pre and post menopausal. My oncologist made it clear that no one knows if Herceptin merely delays reoccurence or not but he said that if I really wanted it, he would write the order. I asked him about a PTEN test and told him if I could get one and it was negative I would withdraw my request. So for now, I am still getting treatments. He did order another muga scan.

Barbara

eileen · 07-09-2006, 09:23 AM

I would like to take Herceptin for more than a year but my oncologist is refusing.
Does anyone know of anyone in the New York area who would give it for more than a year? I'm currently with Memorial Sloan Kettering & they won't do anything unless it's been proven effective. I understand that in Europe they give it for more than one year.

I was diagnosed in 10/04; stage 3 with 7 positive nodes; her2+; ER postive, PR negative; had a lumpectomy, chemo, radiation & finished my last herecptin 3/06 & am currently on Arimidex.

Julie2 · 07-09-2006, 11:18 AM

Hi Barbara,

Congrats on getting Hercpetin beyond year two. My only concern to prolong Herceptin this long is developing resistance towards Herceptin. I saw somewhere that the resistance starts developing at around year 3. Have you discussed this view point with your onc.?

Julie

Jackie · 07-09-2006, 03:14 PM

I will finish with 1 year of Herceptin the first of Sept. I should have 3 more treatments. I am Stage 2 with 1 positive node. I have had a decreased Muga--from 68-54. The last two Mugas were 57. I had a 9 week rest from Herceptin to give my heart time to strengthen. When I went back on Herceptin it was at a half dose for three treatments. My Muga stayed at 57 so they increased it some for my last treatments. I asked my onc about if we would cont. Herceptin past 1 yr. and he said "No." He said in oncology you don't play make-up and due to my heart issues that I needed to finish up at the 1 year mark.

Linda · 08-16-2006, 12:48 PM

Hi all. Does anyone have any new input about doing a second year of herceptin for node pos, non metastatic bc? I'm stage 3a, just finished year one of herceptin and trying to figure out if continuing for another year is a good idea. I think the HERA results are in but not published.
I'd appreciate any info the you all might have.
Linda

Becky · 08-16-2006, 02:52 PM

There is some preliminary data given to my onc via Dana Farber saying that the 2 year results are showing it is better but not statistically better from either a time or money standpoint. Out of 100 women, not even one more would be saved from a recurrence but out of 1000, 2-3 more would benefit. It is not statistically relevant but the data will not come out until at least 2nd Q 2007 if not later as I believe they are looking for disease free survival.

There is also the question if the improvement comes from covering the patient to the 2 yrs beyond diagnosis mark or if it is the full 2 years.

Kindest regards

Becky

rinaina · 08-16-2006, 03:08 PM

I am her2+, er/pr-,nodes negative, clean margins, stage 1, grade 3 and it was a question if I was even going to get herceptin but I am going to start receiving it starting tomorrow, 8/17/2006 for 1 year only. Onc ssid they don't know the effectiveness beyond one year and if you build up a resistance or not and also not sure of safety of it as the build up of it over longer time could have increased heart ramifications. Newest news on Herceptin also states an increased percentage of patients who get heart complications...originally the statistics were only 4-5% of those people gettiing Herceptin ended up with heart complications but that has now been raised to 28%. I am not sure how needed or effective Herceptin is for patients like me who were node negative stage 1 early her2 breast cancer since alll the studies were done on more advanced her2 breast cancer patients. Any feedback?