I received the following email from a fellow blood cancer survivor yesterday.  I didn’t know much about his unusual type of lymphoma called Waldenstrom’s Macroglobulinemia.  I wanted to share the two emails Peter wrote me about WM:

Pat,
Again..thanks for all your (and your wife’s) efforts on behalf of not only MM patients, but also all cancer patients in general.

I have Waldenstrom’s Macroglobulinemia – a rare form of lymphoma that affects about 3 people in a million worldwide, with about 1,500 new cases each year, and usually affects those who are over 60 (although I was diagnosed at 43 years of age). You can find out more about WM at: http://www.iwmf.com/about-wm.


Microscopic stained slide views of Waldenstrom’s Macroglobulinemia from blood and bone marrow
 
While I work full time (and teach part-time) to just plain pay the bills and take care of my family, I also happen to be a member of the Board of Trustees of the International Waldenstrom’s Macroglobulinemia Foundation (an organization dedicated to patient support, education, and research specifically for WM), the webmaster of their website (http://www.iwmf.com), coordinator of their online database (http://www.iwmfdatabase.com), and manager of their email discussion list (iwmf-talk – folks can join it by just emailing me).

Getting that diagnosis of WM and a life expectancy of 6 years at age 43 with 3 children still in grade school and high school was quite a scare. I found little comfort in the phrase my first oncologist told me – “if there’s a cancer to get, it would be your cancer since it’s slow-growing.” So, I started the search for information in journals, libraries, and online to learn as much as I could about the disease. That’s when I happened upon the IWMF – and found a place where I could communicate with others with the same disease and learn more about how to deal with it. Then, my drive to not only help myself, but also others kicked in, and they’ve had me as an active volunteer ever since. I’ve had my ups and downs since then, but still…about 8 years later, I’m still here, and still not planning to go away from this world anytime soon. (I tell my wife she can’t get rid of me that easily!).

Incidentally, a friend of mine who has also had WM for several years was recently diagnosed as also having MM – quite a rare occurrence (in fact, we’re not sure if that occurrence has ever been documented before). He’s conferring with some WM and MM experts now to explore his options.

Again, thanks for all you do. If there’s anything I can do to assist, let me know. Also, best of health to you and to Pattie!

Peter L. DeNardis

Peter added this email later in the day…

Pat-
You might be interested in knowing that right now, a WM survivor (he’s apparently cured of it – again, a rare occurrence) is on a trek with a group of others to climb Mt. Everest. He has taken donations to promote his effort, a portion of which will go to the IWMF, and a portion to the Leukemia and Lymphoma Society. Here’s information about his climb. (He’s also going to be the keynote speaker at our 2011 Annual IWMF Patient Education Forum in Minneapolis in June.)

It’s Mark Schaible, a young AF pilot who was diagnosed with WM in early 1999, the year before he was scheduled to fly the NASA space shuttle. Mark went through five years of chemotherapy, transfusions, removal of spleen and gall bladder, brain surgery, and finally had a BM transplant. He recovered and amazingly, is back to being an experimental pilot for the USAF, and has been in training to climb Mt. Everest for many months. He left Sunday, March 27, and began the ascent on Monday, March 28 along with 13 other climbers and 35 sherpas He will take with him a flag with the IWMF logo and will plant it on top of Mt. Everest. He came to Ed Forums when he was newly diagnosed and said the IWMF helped him a lot to understand the disease and he wants to pay them back. During his recovery from WM treatment to now, he has become an inspirational speaker nationally. His website : http://www.markschaible.com/ Mark has set up a blog and will be writing daily about the Mt. Everest climb (http://blog.markschaible.com/). Also, he has a camera attached to himself so those who wish to can tune in and witness the actual climb.

It’s funny, even though we are stopped short in our tracks by being diagnosed with a terminal, incurable illness, we encounter the most interesting and wonderful people on our new journeys…people we are glad to have had the opportunity to meet!

Peter
 
vino, amore, salute – che altro c’e?
(wine, love, health – what else is there? – Pietro Liburdi)

Thank you, Peter!  Best of luck to you and your fellow WM lymphoma survivors.
 
Cancer or no cancer, feel good and keep smiling!  Pat

3 thoughts on “An Inside Look At A Rare Form Of Lymphoma,Waldenstrom’s Macroglobulinemia, From One Of Our Readers…

  1. Nice work. I came across your blog while “blog surfing” using the Next Blog button on the blue Nav Bar located at the top of my blogger.com site. I frequently just travel around looking for other blogs which exist on the Internet, and the various, creative ways in which people express themselves. Thanks for sharing.

  2. Thank's for the recommendation! Just trying to help as many fellow cancer survivors and caregivers as possible- Pat

  3. My name is Paulette and I am also a Waldenstroms “survivor” having been diagnosed 8/11; hope to be inspired by some of my fellow ‘wallies”

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