Hi Laura,
I am new to this site just having been diagnosed with MDS. I started Vidaza treatments in May. May I asked prompted you to opt for the Stem Cell Transplant? Were you on a drug treatment before?
I do wish you rthe very best and hope all goes well.

Lou

Thank you everyone. I'll will write in my journal here as much as I can. Cause I know how much I look for information.

Best of luck Laura!

FYI: On the home page of MDS BEACON is a News flash dated July 18, 2011 telling about a webinar: managing fatigue in MDS on Thursday, July 28th @3:00 pm ET. One must registar in advance by clicking on the highlighted AA&MDSIF website. There will also be a discussion about drug options. Sounds like it may be very educational for folks like us.

Will keep you in my prayers. May God bless you and keep you strong. We are all thinking of you. Just got back from a week at the N.C. shore with my family. I am absolutely exhausted. Will write more later.

thank you birdmom. I will always be around lol. we are family right?

good to see everyone doing well!

Well hello grooup, i was looking for an online group that will maybe help me understand this disorder. My bro-n-law has been diagnosed with this dieases and he is scheduled for chemo on tomorrow!!!! he has had a total of 12 blood transfusions in 2 years. And the doctors are just now diagnosing it. It is sad to me that it had to go on this long and he is already experiencing weight loss. Seems like it is in the last stages even though the family is not sayin anything. What do u think.?

Hi Jeanie,
I am no expert on MDS having been diagnosed with the disorder this past April, but I do know it has many levels of severity, behavior and impact on people. I have had 3 cycles of Vidaza which may be the chemo you are discussing. Unless you bro-in-law is dealing with AML, the Vidaza should help stabilize his red count and reduce the need for transfusions. The weight loss is most likely anxiety. I lost 10 lbs in two weeks after diagnosis but have put 5lbs back. As far as "last stages", unless he is suffering from acute or chronic leukemia, or his situation was very severe, they would be discussing a stem cell transplant unless his age and health excludes him. MDS can be very unpredictable. We all live with a great deal of uncertainty. I am surprised he had 12 transfusions and just now is being diagnosed. Hopefully the treatment will help.

Hi Jeanie and welcome to the group.

There are a lot of variables with this stuff. Usually there has been a test called a bone marrow biopsy to help determine the level of disaese we have. Three years ago my results had one doctor (substitute for mine) convinced I had full AML buy my Oncologist had the background of my lab reports and new it had been going of for a good while putting it in the MDS class. There are several different chemo treatments as well. I currently am on Dacogen which I get daily for one week out of every 5 or 6. This is chemo week and at the end I'll be at a count of 135 treatments. Side effects are minimal with this and my blood counts though low for "normal" have stayed steady. I didn't start transfusions until late last year and have had 8 or 10 so far.

So as you can see it varys quite a bit. This is a good place to get information, the Leukimial Society is another, along with several that are listed in some fairly recent messages here.

Get the results of labs and tests that have been completed along with reliable infor from the various good sources then spend some time with the oncologist, with his family, if you can to see where things are.

Hope that helps some.

God Bless
Mike

welcome to the forum.
I would say my Dad had probably 200 transfusions. I lost count. Then he had to have platelet transfusions as well and had those from October until April this year.. like others have said it varies from person to person and how advanced they are.

Hi everyone. I have been exhausted and short of breath for several weeks. Went to the oncologist for my bi-weekly Arnesp shot and CBC. My hemoglobin was down to 8.0. Received a transfusion yesterday. Hoping to feel better for at least a while.
God Bless everyone.
Jean

Thanks for everyone's response, talked with his wife and he had the procedure where they apply the porta cath, and after the results of his blood work his platettes were very low, even after having a transfusion of platettes on yesterday. I will keep everyone abreast of his progress.

Jean it is hard to tell really unless you know the type he has. when was he diagnosed?

not sure how much it really matters at this point but I got my copy of Dad's death certificate today. cause of death was dysplasia/acute leukemia. We didn't know he had advanced into leukemia. poor guy. I have to say I miss him so much and it hurts so bad. I think the numbness is beginning to wear off now as I am feeling so many emotions. With my brother passing in January and then Dad 96 days later it is catching up to me now. I am hanging in though.

that should have been mylodysplasia/acute leukemia