Five Year Anniversary, NED

Mary H2 · 07-31-2006, 06:39 PM

Although I have been reading this board almost since it was created, I don't very often post. I'm posting today because I made a promise to myself that if I was fortunate to survive this disease, I would try to offer inspiration to others. I vividly remember scouring the internet looking for "positive" stories when I was first diagnosed. I remember not being able to find any long term survival stories from Her2+ women. And it scared the $#*^ out of me.

I was diagnosed five years ago at the age of 42. I had a 15 month old baby, and found the lump when I was weaning her. My other children were 11 and 14. I had a left MRM, and they discovered one positive lymph node. I was Er/Pr-, but they didn't test for Her2 status back then. My surgeon just knew that my cancer was very aggressive, and wasn't overly optimistic about my future. When she gave me the bad news I remember asking her if I would live. "I hope so" is all she offered. Fortunately, the oncologist she referred me to had recently received information about the national adjuvant clinical trial. He didn't know if I was her2+ or not, but when I told him I'd be willing to try it if I was, he had my tumor retested. Then I went home and read the details about the clinical trial (including the reality that I only had a 50/50 chance of getting herceptin) and I really started to freak. I somehow knew that I had to get this drug, and began a frantic search to figure out how I could do that if I didn't get randomized. After a trip to a major cancer center and phone calls to research hospitals 300 miles who were also beginning adjuvant clinical trials, my husband and I decided that we would mortgage everything we had to get to 50K+ per year it would cost if I could somehow get herceptin off-label if I ended up not being randomized to herceptin in any of the trials.

And then I got the phone call from my lonc telling me I had been randomized to herceptin in the local trial. I could tell from his voice that he was as happy as I was. And the rest, as they say, is history.

My trial consisted of A/C x 4, taxol + herceptin x 4, and herceptin weekly for another 48 weeks. I remember crying the week of my last herceptin treatment, because it had become my safety net and back then we didn't even know if it was going to prove effective. I didn't know how to handle the uncertainty of the future. But then someone gave me some of the best advise I ever got in my life: fill your life with passion, find what it is that you really love and just do that. Don't fill your life with fear. I tried a few different things, prayed a lot for inspiration, and finally realized that my goal in life is to help suffering children. I already had a Master's Degree in early childhood special education and had been working with very vulnerable young children but decided I wanted to move it to a new level and decided to pursue another Master's Degree in Social Work. After three years of year round study, I will be graduating in eight months. I'll never make a ton of money at it, but it gives total meaning to my life.

My 15 month old is now 6 and entering first grade. I never thought I'd live to see her go to kindegarten. My most overwhelming fear through the early days and months of my diagnosis was that I wouldn't even live long enough for her to remember a mother's love. Many times in the first weeks I could not even bear to look at her because of this fear. Now she is one of the brightest lights in my life. My oldest daughter is entering her junior year of college. I remember praying that I would be alive and healthy enough to see her graduate from high school. My son who was 11 when I was diagnosed will be a senior in high school, and has appears to be gifted musician. It hasn't been easy these past five years--both my older kids had some signficant delayed reactions to the cancer that kept me running back and forth to counselors with them. But they're both happy and doing well now.

I'll never forget the night I learned about the results of the adjuvant herceptin trials. It was in May of 2005. For some reason I couldn't sleep, so I got up and logged on to the computer. I might have visited this site. Then I listened to the webcast where they announced the results. I was so stunned I couldn't move, and then cried for the next two days. I remember seeing my onc for a 6 month check up a few weeks later. Turned out he was at the ASCO convention and was sitting in the room when they announced they results. He's a pretty practical low key guy, but I'll never forget him looking at me and saying "You know, sometimes the stars are lined up perfectly in the universe". I knew exactly what he meant, and I will never cease to be filled with gratitude for my opportunity to participate in that groundbreaking study.

I wish you all the best. Find your passion, however big or small, and never give up hope.

Mary

Cathya · 07-31-2006, 07:27 PM

Mary;

Thank you for such an inspirational post. Your story is one I will remember and take to heart. Bless you for remembering to celebrate your five years here so we can all receive your wonderful words of advice. Thank you.

Cathy

Chelee · 07-31-2006, 07:44 PM

Mary, I for one really appreciate you taking the time to share your story with us. So many of us here really need to hear from people like you. We can ALWAYS use more positive stories here.

I know pretty much how scared you must of been when first DX...and here you are watching your SIX year old daughter growing up. That is AWESOME.

I am so happy for you. Once again...thanks for sharing that with us.

Chelee

Bev · 07-31-2006, 07:46 PM

Congratulations, I hope we can all repeat your success.

michele u · 07-31-2006, 07:47 PM

Mary, Wow, that's awesome. Your story sounds soooo much like mine. All the same feeling's and fears. I remember crying the day i found out about the trials too. We are all in this together. We all are connected by this disease. We all are here for eachother! congratulations on your 5 year!! I'm celebrating my 3rd year this month. I had 35 positive nodes!!

Sheila · 08-01-2006, 04:47 AM

Mary

Congratulations...5 years NED...thats better than winning the lottery in my book! May your NED continue for many many more...Celebrate, you are an inspiration for many of us trying to get to that mark!

Berta · 08-01-2006, 05:15 AM

Mary: Awesome Story. Thanks for sharing. BERTA

MJo · 08-01-2006, 07:12 AM

Thank you, thank you, thank you, thank you ... and thank you. Best of health to you, MJo

tousled1 · 08-01-2006, 07:18 AM

Mary,

Congratulations on being NED for five years. Also, thank you for sharing with us here on the board. It's always so good to hear an inspirational story like yours. May you continue to be NED for another 10 years.

saleboat · 08-01-2006, 09:09 AM

Thank you for logging on and sharing your story. It means so much to all of us.

And Michele-- wow, you're almost at three years, that is fantastic. You're really an inspiration for us double-digit node ladies.

Jen

Audrey · 08-01-2006, 10:37 AM

Mary, Congratulations on your anniversary and thanks for sharing your story!

I am also celebrating 5 years NED--my story is so similar to yours--diagnosed at 36 with 2 young children (3 and 5), large, aggressive tumor, many positive nodes, etc. The oncologist was not encouraging at all. I feel so grateful to have received Herceptin through the clinical trial--I remember also how happy I was to find this website and connect with others going through the same thing. Now I'm 41 and my kids are almost 9 and 11! Still hoping to reach 50 and see them graduate...Just think, now Herceptin is standard treatment for newly diagnosed Her2+ patients and they can breathe a little easier now knowing that in many cases, it really works wonders! Don't give up hope, we are truly rewriting the survival statistics for this disease.

tricia keegan · 08-01-2006, 11:17 AM

Mary your story is amazing and I almost had shed tears reading it.Thank you so very very much for posting this as it was exactly what I needed to hear.I had the same chemo/herceptin as you having been dx last June.My surgeon on giving me the bad news then told me I was a very lucky lady as there was a new drug just out which was probably going to save my life! I did'nt know then of course how grateful I would become to herceptin and the difference it would mean to my type of cancer.I finish my years herceptin in Nov but have'nt heard from anyone that did'nt have a spread or mets somewhere after a few years.You've just given me new hope that it is possible and I may be one of the lucky ones.Thank you again and also Audrey congrats to you too!Two great inspiring stories within minutes!!
Tricia

emmasmom · 08-01-2006, 11:47 AM

Mary - Thank you so much for sharing your story. I am crying with joy reading your story. It is such an inspiration and gives me so much hope. I am 35 and have a wonderful 2 1/2 year that I am determined to see graduate college. You story is truly inspirational!

Lisa

dawn · 08-01-2006, 12:18 PM

Mary,

Thank you so much for your post. I didn't realize it until I read yours, but I did the same thing. I was on the internet day and night looking for positive stories and long term survival. You make the days seem so much birghter, and help me to realize that I will see my young children grow and do things I thought I would miss.
Congradulations on your five years and many more to come.

Dawn

CLTann · 08-01-2006, 01:36 PM

Mary,

Allow me to join others in congratulating you for the remarkable 5 year NED. Your story gives rest of us a boost in our morale and hope. We need more people like you to come forward and claim their deserved accolade.

Wish your continuing success.

Ann

madubois63 · 08-01-2006, 04:18 PM

Beautiful!!! Thanks for sharing and thanks for being a pioneer for all of us!!!
..·´¨¨)) -:¦:-
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((¸¸.·´ ¸.·´ -:¦:- -:¦:-
-:¦:- ((¸¸.Maryann -:¦:-´´

mamacze · 08-01-2006, 10:33 PM

Dear Mary,
I remember doing the same thing the weeks, months after I was diagnosed with mets to the lungs in 2004; praying; "Please God, just one or two long term survivor stories". Thank you for sharing the gift of your story with the rest of us. And how grateful we are that you were on the receiving end of the Herceptin; it is stories from pioneers like you that keep the rest of us going..
Love Kim from CT

IRENE FROM TAMPA · 08-02-2006, 04:10 AM

Your story is a GOOD one and so good to hear. Congrats on your 5 years and keep them coming my dear.

I was diagnosed in 1996 and every day I would pray to see my grandchildren grow up, see next Christmas come (my favorite time of the year and big in our family), see my new front door put in, etc, etc,....well

here I am 10 1/2 years later (and I still do the same thing everyday)but everyday is a great day.

You keep up the good work girl and take care.

08-02-2006, 04:46 AM

Mary-

Congratulations on your NED status, and we appreciate your being a trailblazer- and thank you for the uplifting words and encouraging news...

Take care,
Shell

lkc Gumby · 08-02-2006, 08:36 AM

Mary ,

Thank you for posting. It was so wonderful to read about your success. I gives all of us such hope, and it was so kind of you to remember us ;that are new to this BC HER positive thing.
Many, many many more years to you and all of us!!
Linda