← Return to Low WBC, Low Platelets, Low RBC, Large cells - is it always Leukemia?

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Profile picture for janetlen @janetlen

@asarnesejr I wish I could put my arm around you and try to get you to relax. I have followed all of your posts and am glad you spoke to your Hematologist and received your diagnosis. Now your journey begins, all is not lost. I am unfamiliar with the term "low grade." Typically the Dr's refer to us as low, intermediate, or high risk. There are different types of MDS. I have del 5q. I started out as low risk. Your results from your initial post showed low RBC. Your hemoglobin and RBC counts are very important. When they drop to a certain point your Dr will start you on treatment. At some point, you will probably talk to a transplant Dr. depending on your age. At this point take some time to wrap your head around all of this. I recommend you go to mds-foundation.org and read the information on mds. There is also an ipss-r or IPSS-M calculator there which you can use to calculate your risk category. Simply input your bloodwork results, any genetic or molecular changes, and blast percentage. Congratulations on the low blast count, that is very good news!

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Replies to "@asarnesejr I wish I could put my arm around you and try to get you to..."

How long did you remain low risk MDS before it progressed?

I also have 5q and I am on 5mg Revlimid for the last month.

I have felt zero improvement

My hemoglobin goes to mid 6.0 between monthly 2 unit blood transfusions.

The highest my hemoglobin has been is 9.0 a day after a 2 unit blood transfusion.

Have you with 5q seen any improvements in hemoglobin levels, what is your treatment and what is your hemoglobin number ?