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AA Aplastic anemia

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Old Thu Feb 17, 2011, 02:08 AM
Ryan Jay Ryan Jay is offline
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Cancer benefit/Basketball game question.

So,

I am getting all excited about participating in an annual basketball game to benefit the American Cancer society in March. It takes place at the school where I work.

It was during last year's game when I began feeling those strange (now too familiar) symptoms of Aplastic Anemia.

Now, with a HGB up to 12 and change, I'm running a few "suicides" on the court to get in shape. I am determined to be in good enough shape to hustle back on defense come game time.

Anyway, I'm talking to the coordinator to see if I can do a quick two minute pre-game "share my story" inspirational talk with the kids. With AA, you're pretty much treated with all the infrastructure of cancer clinics.

BUT! Then there's that little voice in my head that tells me that I could be hijacking the event on behalf of bone marrow failure diseases.

So, what do you guys think? Am I overstepping on this one?

Thanks,

Ryan
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Ryan Jay: 38-yo, dx SAA: 7/25/10, ATG: 8/10/10. CR with counts still rising. HGB: 13, Plt: 137 WBC 5.1 ANC
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Old Thu Feb 17, 2011, 06:54 AM
squirrellypoo squirrellypoo is offline
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Quote:
Originally Posted by Ryan Jay View Post
So, what do you guys think? Am I overstepping on this one?
Not at all! I think the more people know about these conditions, the better. I had so many people who were SHOCKED to find out that you can have chemo without having cancer, and that conditions like ours which are so similar to blood cancers aren't catered for by a lot of the cancer charities and legislations. The more awareness that's out there, the better chance we have for others with bone marrow disorders to benefit from widening the scope of the help that's out there.
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36/F - 1984 SAA treated with ATG [complete remission until] Oct 08 - burst blood vessels in eyes and low platelets; Jan 09 - AA & hypo-MDS; July 09 - BMT (RIC MUD PSCT) July 10 - 10k for Anthony Nolan (1yr post BMT! 53:48) Sep 10 - Wedding! I've run 5 marathons now!! (PB 3:30!)
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Old Thu Feb 17, 2011, 09:36 AM
Marlene Marlene is offline
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I can see how you can hijack the event if you're not careful. Is the event's purpose to raise money for cancer treatment, or cancer support services, or cancer awareness.

As long as your talk addresses the objective of the event and you tie your experience to it, then you should be OK as long as you don't make it about "you" or SAA. BMT's, chemotherapy effects, infections, transfusions, getting through the treatment and more are shared elements of both. If you can encourage the audience to donate blood or bone marrow, it will make a difference. And you can speak from the heart about this. Blood saves the live of those facing cancer and blood disorders.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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Old Thu Feb 17, 2011, 12:54 PM
triumphe64 triumphe64 is offline
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Hematology and Oncology almost always are together. Go for it.
But I think we have a biased view on this board.
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Dallas, Texas - Age 81 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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Old Thu Feb 17, 2011, 01:27 PM
Neil Cuadra Neil Cuadra is offline
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The decision is up to the coordinator, so why not ask? You can make a big impression in two minutes and people are strongly affected by personal stories. Hearing from a patient like you could encourage more people to get involved and donate to support patients and research for all diseases.
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