Lets do a roll call on adjuvant Herceptin trial

I was dx 4/04 - 1.5 cm, er/pr-. 1 micro met to sentinal node, her 2 +++, had 4 ac followed by 4 taxotere along with weekly herceptin for 10 weeks and now doing herceptin every 3 weeks until August 05. I am doing it off label. I will have scans, etc in August to confirm NED and hopefully remove mediport. You all are my heros.

Best.
Tami

Hi everyone

I'm late getting into this poll but thought I would put in my two cents.

I was Dx Aug 2003. Stage 2A. 2 cm. 3/21 positive nodes. Had 4 A/C, 4 Taxol, and then started one year of Herceptin. Finished in Feb. 05 and have had no recurrence!!

I have had 25 Herceptin infusions thus far. I am so glad that I was accepted into the study. I have had a bad cough ever since I started, have had chest xray, cat scan w/contrast and ultra sound. Everything came back negative. My onc told me last week that it must be a side effect of the herceptin and that I would have to put up with the cough until I had completed the tx's.
I would really like to know if any of you had a cough while getting this.

Hi cailleyj,

When you say you had an ultra sound, did you mean an echocardiogram of the heart? You should be followed with either echo's or MUGA scans of the heart every 3-6 months while on Herceptin therapy, especially because of your cough. Good luck.

Susan

I am getting the Muga scans. I get them every three months. When I had the cat scan, they found spots on the spleen and liver and I had an ultra sound to check that. Was told that they were cysts.

I'm posting this hopefully for encouragement to those of you who did not receive herceptin.

I was dx IDC 3/03, 39 years old, er+/pr+, her2+++, 2 tumors in same breast 2.5 and 2.8 cm. 1 node with mets. Stage IIB. Rt. mastectomy with reconstruction followed by 4 AC and 4 Taxotere. Had my ovaries removed and began Femara after the chemo was finished. For several reasons I chose not to enter the herceptin trial....a little more than 2 years later, I am NED!!!

However, in light of the new studies, I am going to get a few opinions about receiving the herceptin now. JUst hope this puts some nerves at ease for those of you worried that you didn't get the herceptin.

cde

Yes, Calliej, I had a cough for the 12 weeks I was on herceptin and attribute it to the drug. The went away after I got off of it. Another woman's husband also commented that his wife was doing the same thing. Good luck to you!! Vicki Z

My question to all on heceptin. My concern is about the small percentage of congestive heart failure while taking herceptin. I would like to know out of how many people who completed herceptin, did anyone have any heart problems while on herceptin? Thanks for any info.
Regards,
Donna

Just replying to Donna's question posted above.

Yes, Herceptin is known for possible heart toxicity, but the great part about this drug is that the toxicity can be almost reversible. Just a brief break from Herceptin, and you'd be back to your old self, and re-take Herceptin, after your break. :-)

Hi Wendy,

I am node negative, Her+ 3, high grade tumor, hormone -. Stage II. i am getting Herceptin for a year at the Farber in Boston along with mastectomy and chemo,

Hi! I had adjuvant herceptin off label every week - will finish 1 year at end of August. Had 2A,
no recurrence yet.

Mary, Hi My name is Donna. I just finished A/C x 4 and my onco wants to put me on Taxol with Herceptin. Did you have any side effects from either Taxol or Herceptin? I would appreciate any info you can give me. Thank you. Am glad you are doing well.
Regards,
Donna

Jojo: Thank you so much for your reply. I am new to this Her2 board. Someone told me about this board and am so grateful for it. This is my third occurence of breast cancer. The first two were in 1997 and 1999 and were non invasive. In March 2005 I was in a car accident and was in the hospital for 7 days. When I got out of the hospital, I followed up with my onco for my 6 month check up and my labs were off. At first he thought it was from my car accident because I had injured my kidney in the accident. Well when I went to my breast surgeon for followup, he found a lump which the onco or myself did not pick up. He did a fine needle aspiration and found the cancer again. Needless to say, I was in shock after 5 1/2 years of being ned. I had been taking Tamoxifen for 5 years and was taken off it in 2004 of May. My onco told me since I was not menopausal he did not want to put me on femara. Well now it was in 3 lymphnodes out of 13. I just finished up A/C x 4 and my NEW ONCO has recommended Herceptin along with the Taxol. My big concern was the potential for heart problems but your answer has helped me and thank you.

Regards all,
Donna

I'm 1 year out of tx. FECx6, then rads. My onc suggesting Herceptin weekly for a year with Taxol the first 3 months. I'm her2+, er/pr-, 1 positive node. I am very reluctant to add the taxol because of the side effects. He admits that it is recommended because that's how the ASCO study was done. Anyone getting Herception alone that does not have mets? Also interested in different port placement. My port was removed because of clots the first time, but I found it extremely uncomfortable under my collar bone. Sandy

Was on Herceptin trial...got armed to the non-herceptin arm. Got AC and taxol,then rads. Dx'd April 2002: StageIIIA Her2+ ER+ 7/15 nodes. Recurrance to Sternum May 2004 got Taxol/Herceptin weekly followed by cyberknife RT. Was on weekly herceptin until June 05 now Hercetin every 2 weeks....all stable currently. Planning on herceptin forever or until something better comes along...

I'm now stage 4 and 3 times bc. I'm ER - Her 2 + ;
01 - AC and rads; 02 - reoccurance, given Herceptin and Taxotere;
05 - multiple mets to lungs, liver and bones. Given Taxotere, herceptin and zometa. Taken off Taxotere (not responding) and will shortly go on the Xeloda w/wout lapotinib trial. Herceptin has helped my liver and bones but lungs are getting worse. Side effects are minimal and I'm still able to do lots of activity during treatment.

I was in the non-herceptin arm of the trial starting in July, 2001. I have had no re-ocurrence to this point. Am wondering about any info about being 4 years out and going back to take a year of herceptin. Any thoughts?

Wendy,

I am at the same place - my oncologist is telling me that nothing is out there supporting the going back and taking the treatment - if you hear anything or I do, I'll post it - there must be a lot of us in this situation.

Phyllis

Wendy & Phyllis & Jan S & others:

Glad to see othes who seek herceptin but are neither having reoccurance or in the trial. I too am looking at getting herceptin almost 2 years after I finished chemo - I am stage 2, 2 cm, HER2 positive, PR/Es negative, and funky mammory lymph noes (2) positive. So high risk but fine so far -- and my oncologist will give me herceptin if I can get my insurance company to OK it.

Anyone in the same boat - looking to take herceptin but not in the usual camps? Anyone know what insurance companies are doing? Jan, what was it like?

Wendy - my doctor will do it even though I'm in this gap -- have you had luck since your posting?

I'm in Washington DC. Tori

[michele u]

All of you that are more then a year out from tx,
This whole Herceptin tx after chemo for earlier stages is so new, that i don't think the dr's really know the answers yet. They told alot of people that this trial might not work, and it did for alot of women. So the answer to all your questions is that, they don't really know yet. We all are making the new statistics for Herceptin. I personally think that if your insurance will pay for it, take it. No matter how long you are out. I would have done anything to get Herceptin if i didn't get it in the trial. Don't let your dr.s sway you one way or another, this is YOUR choice not theirs.