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    WVgirl2424 shared an experience

    Celebration (Anniversary): 7/5/2016 5 years since stem cell transplant. Last year I walk/ran over 1000 miles. Even with GVHD, eating healthy, staying fit, getting treatments and enjoying life as much as possible

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    WVgirl2424 shared an experience

    Oh No (Chronic GVHD): Told last year that my GVHD is chronic and treatment will continue monthly until they stop working, then there is nothing they can do but possibly another transplant. However, my doc has not put that into the treatment plan.

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    Question: How do I......

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    WVgirl2424 wrote on ShirleyJZ's wall

    Shirley, we have messages a while ago. I was trying to catch up on everyone that I can. So sorry to hear you have no donor yet. I'm planning to do a donor drive this spring/.summer in our area if possible. Since talking with you I have been diagnosed with Graft vs Host Disease and am undergoing Therakos uv treatment weekly. 6 hour round trip to the facility. I've been given 75% survival. I say that's better than theone I got when AML diagnosed. The doc says things going well but I am seeing little to no improvement. They say it takes time. Again, you are right. With a cancer diagnosis people stop calling, visiting and writing. They just don't want to hear it because it makes it real. I hope this letter finds you feeling well and that someone will donate and match you soon! I am here if ever you need to talk. Thank you for all you do and inspire!

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      ShirleyJZ

      Hi WVgirl, thanks for your message. its nice to hear from someone, anyone......I am having chemo all this week again. still no donor yet. I am feeling down and my doc has to listen to me complain. my research shows for my AML, only 10% survive the three year mark, without a transplant. when i mentioned this to my doctor yesterday he just listened, but didn't disagree. so, that depresses me. doctors are so hesitant to give prognosis. i think I would rather just hear it and tell him all the time but then I surpass the guesses so he doesnt give them anymore. well, I am wishing you success with getting over your GVHD, which is definitely one of the possible side effects to BMT, but what choice do we have. It is the only path to a cure.....Thanks for doing a donor drive, every registrant is a possible life saver! hanging in there on month 20 of low dose chemo............

      over 2 years ago
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      WVgirl2424

      Hi Shirley JZ, sounds like you are doing what I always tell my kids and grand kids " live like there is no tomorrow, God doesn't promise you one". I try to not have any lingering regrets. Last year my husband took me to Myrtle Beach for a week, while there we went zip lining. When I was diagnosed I made a bucket list, that is now marked off of it. Even if it is small things, make a list and try to do things as much as you can. It gives you something to look forward to and new experiences with loved ones. My granddaughter calls them Mawmaw memories. I always tells her to make memories, every interaction is a memory. I am praying that your donor is located soon. I found one man my family knows that found his donor in Germany. Anything is possible. Keep smiling and making memories. Oh and not all doc's avoid filling in the blanks. Mine has been honest from day 1, told me without a donor I had 3-6 months. I got lucky my Mother had 10 kids and 5 were still living. I am blessed I know this. I'm praying you get this blessing too! Please keep writing, I will answer, I will be honest. I want you to pray and go out and make memories. Sounds odd huh? If we are here or not, a memory is forever. Thinking and praying for you!

      over 2 years ago
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    WVgirl2424 shared an experience

    Celebration (Anniversary): 2 1/2 year anniversary them cell transplant