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Old Sat Sep 17, 2011, 11:00 AM
Sally C Sally C is offline
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Join Date: Dec 2010
Location: Chesterfield, Va.
Posts: 423
Hello friends,
I just wanted to report how Don is doing on Promacta.
He started Promacta in March, 2011. On 9/13 his platelets were 30,000. His last platelet transfusion was 7/27 and that was to get a colonoscopy. The last needed platelets were 8 weeks before that. His HGB has perked up as well - as it did with NIH's AA patients. On 9/13 it was 9.7. He has been RBC/platelet transfusion dependent since 1/09.
His WBC is the highest it's been since all this started as well - 5.9. I did think it was strange that his neutrophils were almost as high - 5.1 - which made his Neutrophil % high at 84.8 - high normal is 74. Any input?
He did have a cardiac scare last week-end - ended up in ER/CCU overnight and was diagnosed with Atrial Flutter (racing heart) for which he now is on medication. Age (66) and hypertension are two of the risk factors. I haven't been able to find anything to link this to Promacta.
The one concern we have at this point is they found the beginnings of an unusual type of cataract in both eyes- subcapsular - which is at the back of his eyes rather than the usual front*. Cataracts are a known side effect. They will check again on 10/25. If there are changes we'll have to go off study. He will also have another bone marrow biopsy in Jan., 2012 to check for any negative marrow changes.
He is tolerating the Promacta (150mg./day) very well. No side effects that we are aware of.
Will keep you posted.
God Bless,
Sally
Wife of Don - MDS - RAMD - Int. 1 - diagnosed 1/09 - 46,XY,del (20) (q11.2q13.3) (18) / 46,XY (2) - Campath at NIH 4/09. Has been transfusion dependent since 1/09. That may be changing with Promacta.
p.s. As an aside - Don has gone from hypocellular to hypercellular but this showed up in a Nov. 2010 biopsy - pre-Promacta.
*It is at the back of the lens rather than the eye.

Last edited by Sally C : Mon Sep 19, 2011 at 09:17 AM. Reason: Incorrect information
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