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10 Year Multiple Myeloma Survivor Shares His Story

Posted on January 16 2011 by Pat Killingsworth | 3,455 views

Fellow blogger, caregiver and regular reader, Lori Puente, forwarded me a link to this article about a 10 year multiple myeloma survivor a few weeks ago.  I saved it to pass along when I got a chance:

Survivor’s Stories:  Dr. Mel – Dedicated to tomorrow’s outlook

This year, I’m marking my tenth anniversary with multiple myeloma. It’s a milestone, especially when I look back to the beginning, when the median survival was 33 months. So to have 10 years pass since, I’m elated to have faced this challenge and to have come out ahead.

I found out I had cancer because I had tremendous pain in my back and a number of my vertebrae were found to have fractures. I thought I had a back injury that would need surgery. When I was diagnosed, I was really shocked because I didn’t think back pain meant that you could have cancer. Although the prognosis was grim, being a meteorologist, I never really think long-term. I gathered my mental resources and focused on staying alive.

I’ve had tremendously good medical treatment, the absolute best anyone could have for this disease. From the very first day I met with Dr. Dennis Cooper at Yale, I felt encouraged and strengthened. I felt this was not the beginning of any end but the start of a very long journey. I wanted to avoid chemo because I was more interested in trying to find targeted treatments. After about a year and a half of keeping the cancer under control to some degree, it became very aggressive again. I researched and found a small trial in Arkansas of people with multiple myeloma who were taking thalidomide. I went to Dr. Cooper and I became one of the first patients in the world outside of that small experiment to take thalidomide. It was trial and error, but the cancer went down by more than 50%.

By early 2001 the myeloma was on the march again and my back pain became severe. There were experiments with another drug similar to thalidomide called Revlimid, and with the help of Dr. DeVita, who was the Director of Yale Cancer Center at the time, I became part of a Phase I trial. There were only two dozen of us. Five years later I’m still taking it, but now it’s combined with a steroid. I’ve never been in remission; I’ve always had active disease. The only way I can describe it is as a fire that constantly needs to have water applied to it. As soon as the water is cut off, the cancer will blossom very rapidly. With all of the new drugs available, I think that managing cancer is becoming more of a reality. I think I may be at the beginning of a wave where patients are living better and longer than anyone ever thought possible. I don’t think I’m unique as much as I’m at the beginning of a brand new experience in cancer treatment.

One of the reasons I’m still here is my work. I get up at 2:00 a.m., I’m in the WTNH television studios at 3:00 a.m. and on the air at 5:00 a.m. I want people to know that just because one has a diagnosis of cancer, it doesn’t mean it’s the end of one’s life. Being a public individual, I know I’ve been an example for a lot of people and knowing that I’m helping others has helped me in many ways. Even though I’ve shrunk seven inches in the last 10 years, I feel a lot taller than I’ve ever been. When I wake up in the morning, I don’t think about having cancer, I think about how fortunate I am and how happy I am. The last 10 years have been the best 10 years of my life.

2010 Yale Cancer Center 333 Cedar Street, PO Box 208028, New Haven, Connecticut 06520

Click here to see a picture of “Dr. Mel.”  Seems like a nice guy.  Anyone with multiple myeloma who survives ten years deserves a “shout-out!”  I hope you (and me!) are all around to celebrate our 10 year myeloma anniversaries, too!

Feel good and keep smiling!  Pat

9 Comments For This Post

  1. Lori Puente Says:

    Thanks for posting Pat. You know, as I sat and read it again, I was moved – again. You are right about the shout out! When I was in LR speaking, one of the patients there was 17 years coming to LR for check ups! I applauded and told him he was my hero! It gives us all hope and resolve to do what we can until we are just to tired too do more, and then we do more anyway. Great story! Great analogies and Att-i-TUDE!

  2. Pat and Pattie Killingsworth Says:

    You bet! Lori, you should be applauded for all you–as a caregiver and writer–to help us- Pat

  3. Yvon Papillon Says:

    Thank you Lori, Great Story. Keep Fighting. I'm goning on 8 years survival now. You can read my story on my Blog: http://my-multiple-myeloma.blogspot.com/

  4. runcancerrun Says:

    Thank you for your hopeful story! My mother is 1/2 through year one.

    Katie

  5. Pat and Pattie Killingsworth Says:

    Glad you are doing so well, Yvon… And good luck you your mother, Katie! Pat

  6. Yvon Says:

    Stilol here Lori,Closing in on 10 years in June and stil in complete remission! Woot, Woot! Yvon

  7. Pat Killingsworth Says:

    As in the Yvon from Twin Cities area? Old friend or not, no matter where you’re from, so, so glad that you are doing so well. That’s three enthusiastic “so’s” for you!

  8. Vivian Says:

    Thank you all for the great inspiration! My father was just diagnosed with stage 3 multiple myeloma yesterday. Any valuable information we can get is greatly appreciated. Thank you.

  9. Pat Killingsworth Says:

    So sorry! But lots of hope for newly diagnosed patients these days! Go to my homepage and click on “NEWLY DIAGNOSED” tab at the top. Lots of good info there! Then once you get an idea what’s going on in a week or two, call the IMF help line. Get the number at Myeloma.org. My first book might help, especially if you need to decide whether he should get a stem cell transplant or not. Is he young and healthy enough to do that? Cut-off runs between 70 and 80 at most institutions…

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