Poll- Herceptin for a year after chemo/stage 2&3

How many of us were on the Herceptin trial? After AC and Taxol, then Herceptin for a year? And how long has it been since dx and treatment? I'm finishing mine next March and i'm stage 3. Would like to know how many of us are out there. I'm contiplating getting the vaccine trial after the Herceptin. Has anyone else thought about doing this too?

I was in the B-31 trial. Had to drop out part way through because of bad MUGA Scans. Was Stage III at DX 2 years ago...still NED at this time. I considered participating in the vaccine trial but the travel back and forth from San Diego to the University of Washington in Seattle was too expensive for me to handle. I figure if I have disease progression I will enter the trial at that time. Take Care, Linda

Hi michele u,
I think I am on the same trial as you, but got the Taxotere, Carbo, Herceptin arm. I was dx on Oct. 29th almost one year ago. Was stage 3b. I will finish up my last Herc. on Dec 1st of this year.

I finished my chemo part on March 29, and rads on June 1st. Currently NED.

No I am not going to participate in any other trial, unless it is something that can be done here. My old onc. didn't put much faith into vaccines, said they have been working on those for years. I feel like when this part is over and then on Dec. 14, I am having my reconstruction that I just want to move on. My study nurse called and told me she is leaving the practice and she was giving me the protocal for the rest of this study and I think I will be done in the year 2014. The PA and my new onc told me I would only be seen once a year for a mam and chest x-ray and will have 2 more muggas. In reality, I will see my new onc. every 3 months for blood work and physical. I feel with the other scans that I will be getting from my other doctors will be enough.

I was telling my husband the other night, what happened to my old life? I use to finish a book every week, I don't think I have finished two in the past year. Last year, I didn't go to really any school functions because my counts were only good for one week and I missed out on all that. My house needs work and the yard etc. I hope I am not letting anyone down by not participating, but I feel I have done what I can do and if it comes back, there are so many options open for me. So for now, it's trying to find what is normal for me.

When do you consider your anniversary? From the time you finish chemo and are NED or when you have finished up the hercep? Good luck to you and this poll will be interesting to watch and see who stays NED. We are all coming to the end very quickly. I can't wait. take care k

Yes, I have thought about applying for the Vaccine trial. But, I thought that the vaccine trial(s) at Univ. of Washington required that you be Stage IV. Does anyone know? Or are there other vaccine trials for Stage 2 or 3 that are out there?

--Cindi.

Diagnosed 4/2002, left mastectomy, lymph node dissection
Stage 2A, 1/11 node pos, ER-/PR-, HER2+++
Tx û AC, then weekly Taxol. Then 52 weeks of Herceptin through trial (done 11/03)
5/24/04 û Locoregional Recurrence to axillary lymphs . A total of 2 nodes
found under arm.
CT, Bone scans showed no other areas involved. PET scan showed 2 other nodes in
Third level of axillary nodes, again no other areas involved.
7/13 û Surgery at UofM to remove 2 other nodes.
8/5 û began Navelbine/Herceptin treatmentÃÂ*3 weeks on / 1 week off for 4 months.
10/04 û Punch biopsy positive for skin mets on left breast area (Doctor still thinks itÃâ€*s
locoregional.) Had a very mild rash that wouldnÃâ€*t disappear.
11/22 û Begin daily Hyperthermia radiation for 4-6 weeks for skin mets.
Onc said that at least 1 year of monthly Herceptin will follow.

There is a vaccine trial now for people not stage 4 Look at the seattle vaccine trial on the clinical trials section. The only problem is that we have to drop out of our study to do it. But, we are getting into another that might help someone out in the long run too!
HOw did you discover your recurrence in your lymph nodes?

I was dx April Fool's Day: Stage II, er-/pr-, her 2, 1 of 18 nodes. I just finished chemo last week - 4 AC and 4 taxotere/hercpetin. I am not a part of the trial but will continue herceptin every 3 weeks until August, mugas willing. Radiation starts next week for 6-7 weeks. I don't know if I will pursue the vaccines then or not. I am planning on starting the clock once I complete radiation. Best, Tami

In May of this year, I noticed a change under my arm and had the onc. check it out. I thought it was just scar tissue, because it was just along the mastectomy scar line. Unfortunately it was two malignant nodes.

I feel like the Herceptin was working for the year I was on it, but after going off of it...the cancer cells that remained near my mastectomy were allowed to grow again. I'll probably never know for sure, but I am back on Herceptin now. So, hopefully all will go smoothly.

Cindi.

Cindi:

Did you have either a fine needle or core biopsy before your surgery at diagnosis? Also do you remember what your s-phase and diploid status might have been? I am currently 2B with 1 of 12 nodes positive at diagnosis and after dose dense chemo I am on Herceptin for one year. My S-phase was 6.5 % which is borderline and my DNA status was 1.0 diploid which is favorable but I wonder about asking for a second year of Herceptin.

Michele - you already know my story but I'll post it here. Dx'd in 1/04, Stage 3C, A/C * 4, Taxotere * 4, and 52 weeks of herceptin ending 5/05.

I'm scared to come off it too, but I doubt my onc. will let me continue given the fact I'm on a trial. Are you going to travel there to get the vaccine? Maybe we can carpool from the midwest (ha, ha!)

I was DX stage 3A on 6/03. Have done 4 adriamycin/taxotere and then 3 taxotere before I had to quit with skin toxicity. Have been on hercepting off label since 3/04 and will take it until 3/05. Haven't really thought about trying the vaccine. Would like to here what others are thinking!

Tami,
How are you getting Herceptin if you are not stage 4? Are you getting it off label? I would love to hear you whole story. Email me!

Cindi--what did the change look? feel? like? Was it biopsied? Did any tumor markers go up? Sorry you are dealing with this. {{{Hugs}}}

Barbara,

At my initial diagnosis I had a core biopsy. I do not remember what my S-Phase was or my DNA status. I will check and get back to you hopefully tomorrow.

I know that it worries people that I have had this locoregional recurrence after having received Herceptin for early stage BC, but remember that we are all individual cases. I believe that we just have to be diligent in monitoring what new medical advances are out there. You obviously made an informed decision when you decided to go ahead with the Herceptin.

I'll get back to you on the data you asked about. You're doing all that you can right now. Have Faith and Hope. We all have to have loads of those two things, right?

Peace.
Cindi.

Kaye,

The change was hardly noticable. It felt like there was just a bit of scar tissue that had built up under my arm, directly under the mastecomy scar line. I really thought it was nothing, mainly because I thought they took ALL of the lymph nodes under my arm during my initial surgery. Now I realize that they only took 11 and left the rest. They were surgically removed on 5/24 of this year and were about .5 cm each.

My Oncologist was not tracking my tumor markers. He was one of those who didn't believe in their reliability until dealing with Stage IV disease.

But, they checked them right after my recurrence and thankfully all were in normal range, actually the low end of normal. Hopefully there is some accuracy in the markers for me and this is a good sign!

--Cindi.

Hi Michele and others, I know you may have heard my story several times already, but I was diagnosed Stage III, 11/24+lymph nodes in July 2001, finished A/C, Taxol and Herceptin in March 2003 and have been NED since then (over 18 months). So far, so good-- Hope this encourages somebody who will be ending their year of Herceptin soon.

I was diagnosed with stage 2B in 10/02. Completed AC, then 12 consecutive weeks of Taxol, 36 rads, and 52 weeks of Herceptin. Completed Herceptin in June of 2004. So far, so good.

I was diagnosed 7/01. Found the lump while breastfeeding. 2+ cm tumor, er-/pr-, her2+. I did a/c x 4, taxol & herceptin x 4, and then herceptin weekly for 48 weeks. 3 years, 3 mos since diagnosis I am NED and feel great.
Mary

Sorry--forgot to add that I was stage 2B. 1 pos. node.

I just finished dose dense chemo. I am stage 2 with one node. It is my second primary. Mastectomy with no radiation. I am doing weekly hercepton off label - we haven't decided how long to do it for yet! 16 weeks? 26? 52? No one really knows with early stage.

Jan:

I too am stage B with one node positive and did dose dense and I am now on Herceptin off label. My oncologist is talking 52 weeks of Herceptin which is what I thought was the most common approach for Stage 2B. Do you happen to know what your s-phase and diploid status were? I worry a lot about reoccurence and know that with a s-phase of 6.5 I am called borderline and I am diploid which is called good. I wish you well in your recovery.