Mds Documentary

Hi there! I think it is fabulous that you are doing a documentary about MDS. My father was finally and officially diagnosed in June 2007.  My Dad started getting weaker and weaker, very winded, and his color just didn't look right, so I convinced him to go to the hospital. They admitted him to ICU after his CBC showed his HG to be 4.6 and his WBC 1.2. After 7 days in the hospital his doctor discharged him putting him on synthroid and a heart med, and stated Did I mention Dad does not have insurance. Apparently, the doctor decided that he would get an onogologist to go see Dad at his GP clinic since Dad did not have health insurance. I guess he figured the charitable hospital was not adequate.  (Since I havd been "living" at the hospital for 9 months due to my brother in law, Steven, who was a quadreplegic having complications, I had gotten to know the staff very well. Steven had been put on the overflow section of the Onocology floor several times and i got very close with the nurse manager.)  Well I was furious after dad was discharged and the nurses came by to check on me. Thankfully, the nurse manager discussed Dad with a visiting Onocologist and he saw Dad the next day.

Long story I know, put my point is that MDS is not very well known of even by doctors. i have research blood disorders/cancers for months now and it is hard to find info about it.

Dad was diagnosed with the WHO score of RAEB-1. I am not completly certain what all that means...  such as the difference of RAEB-2? What will his quality of life be?, How high of a risk does he have of it becoming AML?    I search and search and still no answers.

Does anybody know these answers or have a good site I can visit?

Hey Bruce,  I have just been diagnosed with MDS and am really interested in what your documentary is all about.  I hope people have been forwarding you with info for your project.  All I know now is that it is rare and my type doesnt even fit the 7 most common so I am unclassified.  My hemocrit gets down very low  (to 10-13) and i have been needing blood almost every week. We are going to try Cyclosporin to reduce white cells to help the red produce more.   Doctors want to do bone marrow transplant but I think it is too early for that drastic of measures.   Anyone have any luck with long term treatments?  I am 56 years old.  Young for this problem according to doctors.

Any advise would be greatly appreciated.   thanks.    

Dear Wayne,

Your younger age is a big PLUS when you need a transplant.  I hope everything goes well for you. If and when that happens, please give an update and in the meantime, our prayers are with you. Be strong! Transplants do cure people.  My mother, on the other hand is 64. The fibrosis is out of control and her survival rates are low.  The treatment for myelodysplasia is very close to my heart, please keep in touch.

Andrea