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Old Sun May 8, 2016, 08:22 PM
PaulS PaulS is offline
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Join Date: Sep 2014
Location: New York
Posts: 247
Hi - As far as transfusions go you mainly want to consider how you feel and how low your blood counts are - If you're hemoglobin is lower than 8 you probably feel pretty bad and a transfusion may make you feel better - depends on how well the Aranesp is working. Look at your WBC, Platelets and hemoglobin - and look at the trend - are one or more lines going down or are they stable? If you get a transfusion you'll want to see how it works - how long it lasts. Once or moth or so is a different situation than every week.

You may also want to discuss a broader treatment plan - for that you should know what your bone marrow looks like - what is the percentage of blasts? Are there cytogenetic abnormalities - and if so - what is the significance - do they put you at a higher risk, or do they suggest a drug such as Revlimid might be appropriate. When was your last BMB - and when will you have another - if you haven't had one for a while and your counts are trending down a BMB would be important.

If your counts are trending down,you might also ask if the DR. is considering a drug such as Vidaza? Why? Why not?

Last - ask why did the doctor think you wouldn't survive a transplant? What about a non-myloablative transplant? Does he know anyone whom he'd recommend for a consult? In my experience the best doctors freely consult with their peers, especially in difficult cases. They also are helpful in making referrals for transplant consult or second opinions.

Is your doctor a hematologist/oncologist?

If you have someone to go with you you may want to bring him/her - it can sometimes be difficult to process information. Also, don't hesitate to ask follow up questions if your doctor uses jargon or language you don't understand - don't be shy or afraid to ask him to explain. Sounds like you have a good relationship - so you should make sure you understand what he's talking about. Why? Is always a good question - as is "what does that mean?"

Good luck
Paul
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Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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