High risk MDS

[Bhutt]

Are there many people with high risk MDS that don't need transfusions?

Thanks

[MDSPerth]

My partner Paul was diagnosed with hypocellular MDS (upper intermediate 2 to lower high risk) July 2013. All three lines were very low at diagnosis. Shortly after diagnosis his haemo started him on EPO and Neupogen. This kept him transfusion free for 9 months until he went to transplant On 4 April.

What is the driving factor that has given the high risk rating?

[Bhutt]

I haven't had to have a transfusion yet. How's he getting along with the BMT? I head out tomorrow for consultation for BMT. My sister is a perfect match. I'm anxious & nervous at the same time.

Thanks for the reply

[Bhutt]

Sandi I just read about Paul having GVHD of the skin. I so sorry & I will pray for both of you to have the strength to cope with this.

Blair

[sbk007]

Originally Posted by Bhutt

Are there many people with high risk MDS that don't need transfusions?

Thanks

No. Its rare to NOT to need a transfusion at some point. My Heme says as a rule Hg below 7 (for a male) its time for a transfusion. Otherwise, its symptomatic as he said if you feel dizzy @ 8.2 he'd recommend it.
As Sandi mentioned the docs they use had a plan to go straight to SCT and so they used growth agents and stimulators as opposed to transfusions. My doc on the other hand sent me for an 8 hr transfusion(2 units) when my hg hit 7.3. I didn't feel right. Dizzy, confused, really tired and brain fog they call it.
What he told me is he isn't worried about my blood so much as the blasts as he plans an SCT when an MUD is found. So, if I need blood once a month he wasn't worried b/c hopefully SCT comes and you don't need many.
How often does your doc check your blood? What are the numbers? like you I wouldn't have known when told but as the Hg dropped I suppose I would have collapsed or fell asleep in a car or ended up in an emergency room.
Good luck with your consultation.

[sobrien]

My WBC and NE are fairly stable at low levels (WBC 1.5 and NE 0.3) but this week my HGB went down to 10.1 and HCT to 30.6. But, what worries me is the PLTs at 78. My question is: When do you anticipate transfusions of RBC or PLTs?

[sstewart09]

My husband received plates when he went down to 10, but everyone has a different threshold. He got red blood at 8. I know that these cutoffs differ depending on treatment options as well.

[Snuuze]

I get platelets if the count drops to 10 and RBC if hemoglobin is below 8. As everyone else has said, that is up to the doctor and the patient. My dr. will transfuse at 8.5 if I'm really tired or planning to travel.