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

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.

Have to agree with Michelle. Do everything you can to gain access to or continued use of herceptin...especially if you have mets or are at high risk. I have been using Herceptin and diet alone since 1998 and I am STILL here despite many doomsday predictions. It is YOUR body. Demand nothing but the best...God knows after all we've lived through...we DESERVE it..smile...Best to all, Gina

Hi, I'm new to this board and it was my oncologist who recommended it. I'm stage IIa,node neg, er+, Her2 and had a lumpectomy June of 2004,chemo radiation. In April 2005 I had an oophorectomy- specifically so that I could go on Femara. Unfortunately, I couldn't tolerate the side effects and had to stop taking it. My doc wants me to go on Herceptin and I have been reluctant to start it, but reading what you all have said makes me think it's my best option. Thanks

I was not in the trial but was able to start the taxol/herceptin treatment, since the study was released as I was finishing dose dense A/C. I am stage II, 1cm tumor with 5 of 14 positive nodes. I am so grateful that I was in the right place at the right time and my onc was at the ASCO meeting, so that I was put on this treatment immediately. All of these posts are encourgaging and I wonder (for my own information) if anyone from the herceptin arm has had a recurrence at this point. Also, I have a friend who was on the trial in the no herceptin arm who is now receiving it. I wonder (for her information) if anyone on the no hereptin arm has had a recurrence. It seems to me that all reports are extremely positive and I am grateful for the treatment and the cooperation of my insurance company. Perhaps there is a site that has this information or statistics that I am unaware of?

Sassy

I am new to this board and also new to Herceptin.

At age 53, I was diagnosed in September of 2002 with a 2.4 cm IDC, Grade 2, negative nodes, positive ER, PR, and her2 neu. At diagnosis, I looked into getting into a clinical trial for Herceptin but did not qualify due to negative nodes.

My treatment: lumpectomy, SNB, 4 AC every three weeks, radiation, Arimidex and... Herceptin started three weeks ago.

After researching and listening to the ASCO results, I decided to start Herceptin-- 2 and 1/2 years after my last chemo. My onc supported my decision and my insurance company is paying for the treatment.

I will be receiving Herceptin every three weeks for a year. So far, my two treatments were not as easy as I expected. After the first treatment, I had a fever and chills in the afternoon. I had few side effects with the second treatment but my IV access was a real challenge. It looks like I will need a port.

This website has been a great source for information. I'm hoping for some positive reinforcement for my decision to start Herceptin so long after my original chemo...

Thanks,

Linda

LindaBL, your situation and timeline is similiar to mine. I was diagnosed Oct 02, grade 3, 4.5 cm tumor, er+ pr-, 1 positive node, Her 2 positive, mastectomy. CEF chemo 6 times, once every 3 weeks. Also taking Arimidex.

This past spring my onc agreed to Herceptin and I started in May. Just had treatment # 12 today (weekly). It is going pretty well. My MUGA was 50-52 so that has me somewhat concerned that I may have to stop early. My side effects have not been too troublesome. Runny nose and sometimes a funny feeling in my chest on the day of treatment. Feel kind of hot and a little strange.

The most difficult decision will be whether or not to add Taxol. My onc said I could, the decision is mine to make. Wish I knew if any other "late starters" will be including Taxol with the Herceptin.

I have not been able to visit this site for about a month, (busy), so I will do some reading to see if that may have been discussed.

Barb