Her2Neu

Mistie · September 2003

My mother was diagnosed with her2neu breast cancer in June 2000. She went through 9 months of chemo and radiation. She was diagnosed with re-occuring breast cancer againin August 2001. Again chemo and radiation. It now seems to have matastisised to her lungs and surrounding lymph nodes. Is anyone out there a survivor or know a survivor that will share their story with me? I am looking for any information that will shed some light on what is ahead for my mother and my family. Thank you for your help and support. Mistie

hummingbyrd · September 2003

I have had breast cancer also diagnosed June 2000.
Went through surgery, chemo, and radiation which ended May 2001. August 2001 we found a bone metastasis to my right arm and then Oct 2001 to my low back. In my opinion the best thing out there for HER2neu mets, wherever they are is an IV drug called Herceptin. I took mine for 18 months on a weekly basis by port-a-cath, now I go every 3 weeks. Herceptin is a mono-clonal antibody, which specifically attacks the HER2neu componant of the tumor. It hasn't caused any side effects in me, thank the Lord. The one thing you do have to watch for is congestive heart failure, especially if any previous history of heart disease. As for chemo they may want to add on Navelbine or Iressa or Xeloda. All of these agents, although they are chemo drugs, don't pack near the negative side effects as Adriamycin, or so I've been told. Remember even though this has gone to her lungs, its still breast cancer, not lung cancer, unless its a new primary. Both are beatable, but to me it helps to think I've had only one cancer rather than breast cancer AND bone cancer.
How old is your mom?
Is her health good?
Is she a Christian?
I know I had to have surgery, chemo and radiation, but it has been my faith in God that has kept me alive.
He is the Greatest Physician of All.
Keep up a positive attitude! As I said this can be beaten! God bless you and your mom. (((HUGS))) hummingbyrd

jeancmici · September 2003

Mistie,

I have some idea how your Mom feels because I too have HER2neu and it is a damn aggressive cancer. I had not really realized how aggressive until I began researching after my cancer spread to bones, lungs and liver (symptoms only in the bones). I had a longer message typed but then I went to www.google.com to get you a link and found a good one, then lost my previous message!

So since it's late tonight, I'll just give you this URL which looks very complete.

http://www.nbcc.org.au/pages/info/resource/nbccpubs/metastatic/

Post any more questions you have and we'll try to help. Hummingbyrd gave you very good advice and she has not only first hand experience but a health professional background.

Sending warm wishes for courage to your mother and you.
Jean

blossomtime · September 2003

I am her2neu pos (3+), I had 6 of 9 nodes positive and a large tumor, 4.5cm. I finished my chemo in january after 8 rounds, with 12 weeks herceptin. I also had radiation even though I had a mastectomy. Yes I realize my tumor was very aggressive. But I feel I was lucky in one respect that I was able to get herceptin and usually this is not given in adjuvant chemo only if it has mets to another body system, excluding lymph nodes. Obviously I am very concerned about a recurrence, but I can only pray that it won't. I have done everything I can. I am 16 months out from diagnosis. So far so good, though I realize that I am at risk for some time to come. Got results of brain MRI today and it was neg for mets. So at this point everything has been scanned and appears nothing here at this time. I will keep your mother in my prayers and hope she responds well to her treatment. Good luck to you both. Sharon

jeancmici · September 2003

blossomtime said:
I am her2neu pos (3+), I had 6 of 9 nodes positive and a large tumor, 4.5cm. I finished my chemo in january after 8 rounds, with 12 weeks herceptin. I also had radiation even though I had a mastectomy. Yes I realize my tumor was very aggressive. But I feel I was lucky in one respect that I was able to get herceptin and usually this is not given in adjuvant chemo only if it has mets to another body system, excluding lymph nodes. Obviously I am very concerned about a recurrence, but I can only pray that it won't. I have done everything I can. I am 16 months out from diagnosis. So far so good, though I realize that I am at risk for some time to come. Got results of brain MRI today and it was neg for mets. So at this point everything has been scanned and appears nothing here at this time. I will keep your mother in my prayers and hope she responds well to her treatment. Good luck to you both. Sharon

Sharon,

You must have been in a clinical trial to get Herceptin as adjuvant treatment. That was before my time of treatment. You seem to have a good attitude knowing the score and realizing you just have to live with whatever is down the line. I am 66 now - and most of the women here are younger so I assume you are relatively younger. I am hoping that you have some troublefree years ahead of you.
Jean

chemoqueen1 · September 2003

Hi Mistie,

I was really scared when I started reading everything about Her2Neu. I was dx in February Her2+ neg nodes. I am in a trial using herceptin with Chemotherapy. I finished the Chemo part July 25th and now am doing radiation and will remain on Herceptin for another 6 months. Herceptin has proven results in metastic Her2 breast cancer. The study I am is to find out if adding herceptin earlier before there has been spread will prevent re-occurance. I know that they do use Hercptin in treating metastic Her2 bc. You may want to check out the following web sites.

http://www.bcirg.org/Internet/Studies/BCIRG+006.htm

http://www.gene.com/gene/pipeline/trials/herceptin/bcirg006/index.jsp

inkblot · September 2003

Hi Mistie:

I was dx'd in '01 with a 1 cm tumor. Had lumpectomy with the sentinal node procedure. The standard histochemistry test showed all nodes clean but the more sophisticated cytokeratin test showed about 7 cells in one of 3 nodes taken to have what's called a "micro metastasis". The cells were immature and most docs consider this borderline for actual lymph node mets.

Further tests revealed my Her2neu to be a 3+, rendering my cancer a very aggressive little demon. Up until that point, only the lumpectomy and radiation had been considered. After the complete Her2neu status was revealed then chemo became the hot topic. In my case, all experts I consulted, agreed that the A/C chemo WAS aggressive treatment for me. It was followed by radiation treatments, which is basically standard treatment following lumpectomy.

In my case, I know that I chose to do all that could be done to rid myself of any renegade cancer cells while at the same time, not going overboard. Everyone is different in how they feel about trials for very early stage breast cancer. Recurrence and/or mets is a whole other situation, with different considerations. The biggest research info which helped me to make a decision re Herceptin was the fact that Adriamycin also targets Her2neu.

Only one of the 2nd opinions I got (and I got several) suggested Herceptin in addition to the A/C and rads. It was a renowned facility in Philadelphia. They were doing trials at the time and my only marginally qualifying point was the micro mets in the one node. (they didn't have, at the time, enough participants to get on with the trial) I considered the offer but declined as it didn't seem to be right in my case and I didn't relish spending a year in weekly treatments, which no one else could justify my needing. The experts in a renowned New York treatment facility strongly disagreed with the Philadelphia idea as well, stating that it was "over kill" and would be placing myself at additional, unnecessary, unfounded risk.

In two weeks time, I will have been two full years out of treatment and am doing wonderfully well. No recurrence, no mets and no major problems.

I know several women who have survived several mets, following Her2neu bc and have done wonderfully well. My best advice is to research, get additional opinions and maintain HOPE. Always HOPE! New and innovative approaches become available regularly and many of the current ongoing trials offer some amazing protocols, with promising results. The website I referenced above also offers info on current trials throughout the country, so a check there should yeild the latest info.

It may help, as you hang in there with your Mom, to know that there are many bc met survivors walking around healthy, years after the incidence.

All the best to you and your Mom and I hope you guys will find some useful info at the suggested websites. Jean is a tremendously strong woman with many resources and has some great ones to share!

Wishing you lots of love, light and laughter to help guide your Mom's decisions and direction in treatment.

Ink

jeancmici · September 2003

inkblot said:
Hi Mistie:

I was dx'd in '01 with a 1 cm tumor. Had lumpectomy with the sentinal node procedure. The standard histochemistry test showed all nodes clean but the more sophisticated cytokeratin test showed about 7 cells in one of 3 nodes taken to have what's called a "micro metastasis". The cells were immature and most docs consider this borderline for actual lymph node mets.

Further tests revealed my Her2neu to be a 3+, rendering my cancer a very aggressive little demon. Up until that point, only the lumpectomy and radiation had been considered. After the complete Her2neu status was revealed then chemo became the hot topic. In my case, all experts I consulted, agreed that the A/C chemo WAS aggressive treatment for me. It was followed by radiation treatments, which is basically standard treatment following lumpectomy.

In my case, I know that I chose to do all that could be done to rid myself of any renegade cancer cells while at the same time, not going overboard. Everyone is different in how they feel about trials for very early stage breast cancer. Recurrence and/or mets is a whole other situation, with different considerations. The biggest research info which helped me to make a decision re Herceptin was the fact that Adriamycin also targets Her2neu.

Only one of the 2nd opinions I got (and I got several) suggested Herceptin in addition to the A/C and rads. It was a renowned facility in Philadelphia. They were doing trials at the time and my only marginally qualifying point was the micro mets in the one node. (they didn't have, at the time, enough participants to get on with the trial) I considered the offer but declined as it didn't seem to be right in my case and I didn't relish spending a year in weekly treatments, which no one else could justify my needing. The experts in a renowned New York treatment facility strongly disagreed with the Philadelphia idea as well, stating that it was "over kill" and would be placing myself at additional, unnecessary, unfounded risk.

In two weeks time, I will have been two full years out of treatment and am doing wonderfully well. No recurrence, no mets and no major problems.

I know several women who have survived several mets, following Her2neu bc and have done wonderfully well. My best advice is to research, get additional opinions and maintain HOPE. Always HOPE! New and innovative approaches become available regularly and many of the current ongoing trials offer some amazing protocols, with promising results. The website I referenced above also offers info on current trials throughout the country, so a check there should yeild the latest info.

It may help, as you hang in there with your Mom, to know that there are many bc met survivors walking around healthy, years after the incidence.

All the best to you and your Mom and I hope you guys will find some useful info at the suggested websites. Jean is a tremendously strong woman with many resources and has some great ones to share!

Wishing you lots of love, light and laughter to help guide your Mom's decisions and direction in treatment.

Ink

Am wondering what scans if any you have had since you are just a few weeks behind me as to end of adjuvant treatment.

There seems to be a lot of us with the Her2 in the 3+ range - I am thinking that 3+ could means some of us could be a big + more than 3 while others just barely 3 - 30% of women are affected - seems many of us have found this site.

Thanks for the compliment - I don't feel strong all the time - that's for sure! From scared to confident all in an hour.

Jean

blossomtime · October 2003

jeancmici said:
Sharon,

You must have been in a clinical trial to get Herceptin as adjuvant treatment. That was before my time of treatment. You seem to have a good attitude knowing the score and realizing you just have to live with whatever is down the line. I am 66 now - and most of the women here are younger so I assume you are relatively younger. I am hoping that you have some troublefree years ahead of you.
Jean

jean,thanks for the words of encouragement. Young is in your mind, dont you think? I just turned 50, was diagnosed at 49. I was not part of clinical trial but the herceptin was recommended at a cancer treatment center. My oncologist in my home town ordered it and that is all there was to it. I do feel lucky to have gotten it. I hope it does what it is supposed to do. I have great hopes in it. Wish you well. Sharon

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