How long Has everyone Lasted?

[Terri]

Husband Dx in August 03, however I think this started about 6 months earlier when we started seeing signs, (bruising Petechia etc). SO far he is maintaining. Our doctors did not give us a Life expectancy and I am grateful for that. Our Hemo is aggressive and does not pull any punches tells it like it is. He is happy with Bob’s progress.
Bob is RAEB-T. Presently on Vidaza and also follows a Nutritional /Alternative therapy with a lot of Vitamins, supplements and good eating..
Bob will turn 60 this May.

[JulieMarie]

Thanks to everyone posting a reply. It’s helping some. Since my mom is not tx dependant yet maybe, just maybe she’ll live longer. I hope, I still want my mom to be there at my wedding and to be there for her grandchildren to be born.

[shirlsgirl]

JM,

Your mom is only 53? Would she consider SCT or BMT?

Jody

[JulieMarie]

shirlsgirl,

At the last dr. appointment (almost a month ago) her dr. said that a BMT is way off into the furture. Which is puzzling to me cause I know you could be on a waiting list for years before it comes true. Good thing she has a total of 5 brothers and sisters (3 of which are pretty healthy) so hopefully one of them would be a good donner. IF I would know now that if I were to have a child and that the stem cells would work for dear young mom I would try to have a child right now, even though I’m not married.

I would think and hope that mom would go through a BMT or a SCT, but we just lost my jr high math teacher last month after a BMT. So she may be a little more scared to go through one. I know that her family is behind her 100% of the way, and that is the most important thing right now.

Mom goes back to the dr. tomorrow, unfortunately, I can’t get off of work for this one, I know I won’t be as good of a worker tomorrow, but you got to do what you got to do.

[KP2112]

I think your idea is great. I will help out in anyway I can to put this information together. Perhaps a chart form would be useful. Let me know your thoughts…

Kind Regards,
Karen P.

[gemloyear]

Yes tah, it worked. I found it to be an excellant article, very informative. Thanks so much.It helps a lot when you put the site in the way you did. I still haven’t found out how it’s done,wish I could do it.I still haven’t learned how to navigate the web sites on my own too well yet.the commputer seems pretty easy once I get through my head ( that’s saying a lot).Thanks again, have a good day. Ellie

[gemloyear]

Julie, By the way the the A.A. & MDS. Foundation is also compiling a patient registry, see the cover of the winter news letter. Ellie

[Lexingtongrn]

Hi…My best friend, age 65, CMML, 1st symptoms were summer of ’03. Went to Dr and diagnosed 2/04, tried Gleevac, Vidaza, Hydrea. Now doing chemo and will have a BMT At Duke Univ. in Durham 3/21 & 3/22/05. No one ever mentioned to us how long to expect him to live. But, he was in very bad shape by the time we got to Durham, the first time in 12/04. He was very feeble and in extreme pain w/his spleen.

[Suzanne]

Paula, Good luck to your friend. I think if the BMT works he has the possibility of being cured and everyone treating him will be hoping for that outcome. Therefore no projected life span at this point.Hope it works out to be a lot of years of good health!

[Lu]

My father lasted nine years. He died 3/13/05. Everyone said 5 years max. But with the proper care … who knows…

[Nanxy]

I was diagnosed 9/04, although had symptoms since 6/04. I was diagnosed with secondary MDS. This was from two bouts of chemo and one of radiation therapy. They say prognosis is not good. I am on procrit 60,000 with 180 neupigin twice a week to keep levels at 1.7 for whites and 10.6 for hemo. Platelets are at 30,000 at the moment. The more neup. that I receive the lower my platelets go. I am going through testing to see if I am healthy enough to go through a mini stem cell transplant. Stanford has found a perfect match so now all the waiting! Hope this info helps someone!

[susan rose]

Hello. I will try to give you some info on my Dad’s case. My Dad was called “The Miracle Man” by his Hematologist due to the many years he struggled with the MDS disorders along with a heart condition. Unfortunately, he recently lost his struggle and passed away on April 1, 2005. The official cause of death was MDS and congestive heart failure. He was 68 years old and sadly died 3 years to the date he first retired. My Dad was originally diagnosed with Polysythemia when he was in his thirties and did not develop Myelodysplasia until June 2003(age 65). The last 22 months have been a steady decline, with his heart failing steadily as well. He started transfusions in October 2004 and was dependent on them(every 2 weeks)by time of his death). He started his first round of Vidaza on March 7, 2005 and made it through first round. He had more weakness than normal and fell once. It was necessary for Dad to have another transfusion 2 weeks after last shot. Due to a RBC of 6.1 and WBC of 1.5, it was critica. He had 2 blood pints on 3/29 and another pint one 3/30. Although seemingly comfortable later that day, he deteriorated rapidly through the night. I was able to see him that afternoon and he was very ill. We took him into the hospital, he was admitted to ICU and I am heartbroken that he passed away the following morning. He was due to start second round of Vidaza on April 4, 2005 had he lived. It is hard to know what really caused his final decline since both his heart and blood counts were so fragile. I wish you all struggling with this disease the best of luck. My Dad said many times to me these last months while we researched MDS on the Web that he felt he was born 10 years too late to survive this terrible disease.

[Jimmy D]

Hi,

Male – 46 yrs old
Diagnosed Dec. 2002
SCT Feb 2003
some chronic gvhd – getting better

[J.claire]

How is everyone doing? I find it encouraging that so many new trials and studies are being undertaken, although many of you have struggled with such painful losses. I still have hope that MDS will be better understood and, finally, cured.

[jga_socal]

Wow. J.Claire, you sure resurrected this thread from the past! Its a good one though and should prolly be a sticky, always on the top of the topics.
My signature says it all for me cept I just quit work on Friday to prepare for a stem cell xplant in a few weeks. There are two 10/10 matched donors at this time and I dont want to miss the opportunity for a cure since my blood counts just took a turn for the worse.
Now I wish I could get updates from some of the previous posters like JimmyD! Hey Jimmy! what up! U still there?

[Author]

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