Nine years her2 positive !!!!
 

Hi ladies,
I am writing this with enormous gratitude that I have reached this 9 Year BC anniversary. I've recently returned from my 6 mos check up, and finally had the nerve to ask my sweet Onc if he thought I would make it back then. He smiled and told me if anyone would, he thought it would be me. You see back then it was a recent development that an additional classification of C was added to the Stage 3 cases.There was only Stage III A. and B then. This meant for me that had I been diagnosed a few years earlier I would of been classified a stage 4 and would not have been a candidate for surgery, or the treatment I received.( My onc was part of the team at MD Anderson that pushed for this additional classification to provide an option of CURE for cases like myself) Anyway, to throw another ratchet in, I was also HER2 positive and when he told me that he looked really disturbed. I was actually happy since I knew I would probably get the newly approved Herceptin and just maybe it would work for me. He told me he had seen HER2 cases(before Herceptin) to be the worst BC prognosis and did not have any long term data for a case like mine. However, my dear Onc, held out his hand to me and said 'We're going for the Cure for you" I remember telling him then to throw everything he could at me. You see, I had just lost my Mom to Met BC and he was also her Onc. and we all had walked the long road of metastatic dx together.
That was 9 years ago and I am well. Living Large! I don't let a day pass without thanking God for my health and blessings I have in this life. I am blessed to share my life with a wonderful man who stood by me, while some members of my family ran for the hills. I have 2 beautiful girls and healthy happy grandchildren and a new baby boy coming in August! I am blessed to have my faith , and have truly long time dear friends. Upon my return home I went back to my career in research, but it would be Breast Cancer Research this time. How cool is that to be able to do that?! So many new treatments and lots of good outcomes.
Anyway. I am posting this to say hi to my old timer sisters on this board and also to let the newer sisters, know my story. There are lots of us out there.
I wish all a gentle road on a journey no one wants to go on.

Re: Nine years her2 positive !!!!
 

Thank you so much for posting. I am halfway through my treatment and can use all the positive news I can get!

Dee

Re: Nine years her2 positive !!!!
 

Linda,
Lucky Linda! May it be forever.
Love
Karen

Re: Nine years her2 positive !!!!
 

Linda,
You have been my inspiration for the last 3 years and 7 months. I feel a special kindship to you since our Stage and # of lymph nodes is the same. I hope I can write on this board in 9 years that I am still NED. Congrats to you...I am so happy for you!

Re: Nine years her2 positive !!!!
 

Yippee Skippy - give it a name and buy it a drink. I am so happy for you!! Herceptin is a real game changer.

Re: Nine years her2 positive !!!!
 

Linda, So happy for you! Congrats on your 9th! Best wishes for continued NED always!
Joanne

Re: Nine years her2 positive !!!!
 

Congratulations on your anniversary and for sneaking into treatment just in time when Stage IIIc was recognized.

If you don't mind my asking (since you are a breast cancer researcher, you probably won't), did you try to find out if your mother's bc was her2+ as well?

There is an X-linked her2+bc in mice related to FoxP3. I have posted on it before(article out of U of Michigan) and am interested if there is such an entity in humans as well.

Since her2 testing is so new (relatively) it is hard to know, but some of these specimens may still be out there to test.

Along the same vein, while at ASCO I spoke with an Italian from Dublin studying why some Stage IVs survive 10+ more years (looking at gene expression profiles etc) to see if we can discover why they do so well. In his subset in Ireland, they constituted 9% of the patients with Stage IV her2+ bc.

I am hoping those treated at non-academic hospitals (obviously not you) will ask to have their tumor specimens before it hits the 5 year mark (when they are legally allowed to put them in the trash bin/ incinerator/etc) so if this researcher or others needs a larger number of patients to study (9% of her2+ patients is not that many patients) they could reach out to her2support.

Re: Nine years her2 positive !!!!
 

Thank you all for your kind words.
Lani, My mother did not have "her 2 testing" she recurred after 20 years; massive mets to liver, a liver biopsy was not an option. Our familial hx is interesting as all females on my mothers side dec'd from BC. However not being Brac A positive and assessing other cases like mine it is felt bymyself, and concurred with my fellow researchers that there is most definitely another mutation out there. For that matter it may be a number of mutations that have not been definitively identified yet (and Yes Fox P 3 may be one) The very incorrect assumption is that if one tests neg for Brcca 1 or Brcca 2 they do not have a "hereditary mutation". Not true...We just don't know what those genetic mutations are yet.
Rest assured though, Most Clinical trials have a subset of genetic profiling components, so as we "speak" data is being accumulated to identify these genetic mutations. Once ID'ed Targeted tx is right behind.
There is however so many variables considering one's genetic make up and response to tx.
I am privileged and honored to be working in this field and honestly feel there is much hope with new txs and ongoing research for BC and particularly her2 dx.

Re: Nine years her2 positive !!!!
 

A big hug to you!!! This 9 year club is awesome!!!!! WooHoo!!!

Re: Nine years her2 positive !!!!
 

Congratulations Linda - keep living life to the full!

Best wishes, Marie

Re: Nine years her2 positive !!!!
 

Congratulations on your 9 year anniversary and for driving over the road behind you. You have a great attitude and have a sweet way of sharing it. All the best!

Re: Nine years her2 positive !!!!
 

Congratulations!

It's good to hear from you. Please come back and visit more often.

Re: Nine years her2 positive !!!!
 

Congratulations Linda. 9x9 more years to come! :-)

Re: Nine years her2 positive !!!!
 

Congrats! 9 years survival is awesome. 49 years is even better, so go for that

As to hereditary components: There's been a lot of cancer in my family, both on my mother's and my father's side. I recently gave a blood sample to the Dutch National Cancer Hospital where I had my rads. They are looking for genetic info and I was happy to cooperate.

There wasn't so much BC, but many different kinds of cancer and I wonder whether these were related. On my Mom's side:

Her uncle died of lung cancer
Her aunt died of BC
Her only brother died of pancreatic cancer
Her niece died of Non Hodgkin lymphoma (aged 38) (She only had two nephews, one niece)
She died of esophageal cancer herself
We lost touch with the rest of her family, so I don't know about them.

On my father's side:
Because he is Jewish and we live in Europe, most of his relatives did not survive the war.
But:
His only brother died of Hodkin's lymphoma
He had prostate cancer, but survived that

And then there's me, Breastcancer.

As 1 in 3 people develop cancer, the score in our family is much higher. I have always thought that there are more hereditary cancers than we know about at present. I also think that maybe the environment of the cancer cells determines (among other things) whether they can grow and metastasize. So if our genetic make-up is cancer friendly, we let the nasties grow bigger. If we could do something about that, we could keep the cancer cells in check.

Ofcourse I'm no researcher and I don't know nearly enough about it, but still... I wonder if any research is done into that.

I am so grateful for all those who are trying to find a way to stop cancer, who are researching, sharing info, going to conferences etc. I wish I could do that, but at the moment my other health issues keep me confined to the couch several hours a day. I can read though!

Jacqueline

Re: Nine years her2 positive !!!!
 

How Awesome is that! Gods blessings to you and your family! I'm in tears how happy I am for you and your family!

Re: Nine years her2 positive !!!!
 

Great news Linda!
Big congrats on celebrating 9 years out, and wishing you many more years to come.

all the best
caya

Re: Nine years her2 positive !!!!
 

Huge congrats Linda, I'm seeing the Onc next week for results of my Mammo and hoping to celebrate nine years with you!:)

Re: Nine years her2 positive !!!!
 

Such wonderful news like this always makes my day! Thanks for posting!

CA

Re: Nine years her2 positive !!!!
 

Big congrats Linda from another Niner!

Re: Nine years her2 positive !!!!
 

Inspirational =Thanks for sharing and may the good news continue!