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MDS Myelodysplastic syndromes

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Old Thu Feb 13, 2014, 10:33 AM
MaryS MaryS is offline
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Join Date: Nov 2013
Location: Herndon VA my father in New Orleans,La
Posts: 24
Unhappy My Dads hands hurt!

Good morning friends,

I am trying to do some research on the computer to help my mom and dad, but I thought first to ask you. About three weeks after my father started the procrit shots, he developed hand pain( arthritis pain) stiffness, unable to close his hands. He thought it was from the procrit shot,but when he had a couple of weeks off from the shot, he still had the problem. He has been seen my rheumatologist,, and they did test to r/o autoimmune dx. he had false/positive test.His mother had Rheumatoid arthritis. Although he did not have this problem before the dx, I think it might be associated with it. What is a false positive anyway? is the false positive because he has the dx of MDS?MPNPrimary myleofibrosis.
I am trying to get a consensus here. please would be let me know if you have this hand pain that my father is experiencing . If a lot of people give a me a no response, that I will know it is something other than the MDS is causing it.

Another situation that is happening is lymph nodes popping up. Most are the size of peas neck,armpit,elbow and a lima pea size in the groin size. This one is painful. He is getting a biopsy monday with a BMB. he has developed itching. We know that this is a sign of advancing Dx. Lymphoma? leukemia? a response to the Fibrosis? I don"t know . I hope the wait and watch was a good Idea. we are always second guessing. Medicine has not been started yet?

Thank you everyone for your support.
P.S> my dad did not do clinical trials as posted on the bottom, just wait and watch.
Sincerely
Mary Schmitz( loving my father, and feeling my mothers agony)
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Mary, daughter / caregiver of Bob age 77; on Oct 1 2013 dx with MDS/MPN overlap +Trisomy. Jak2 at d< 5 blast. , and on March 1 2014 Dx with AITL non Hodgkin's Lymphoma.
Tx: decitabine/prednisone/Jakafi?
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  #2  
Old Thu Feb 13, 2014, 06:55 PM
gina66 gina66 is offline
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Join Date: Oct 2012
Location: Roland, OK
Posts: 26
Athritis on hands

I used to have this symptom with fever. I was found to have Parvo Virus infection. He has to be tested by PCR not regular parvo virus exposure test. Parvo virus lowers red blood cells.
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PRCA, infected by Parvovirus. Took Prednisone 20-60 mg/day for 6 mos., Cyclosporine 100- 200mg/day for 6 mos., Exjade 1000-2500 mg/day current, Warfarin 3-4mg/day, Cyclophosfomide 50 mg/day for 4.5mos., Campath for 2.5 mos, Danazol 200-400 mg/day for 6 mos. Currently- Rituximab for 4 wks.
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Old Thu Feb 13, 2014, 10:12 PM
riccd2001 riccd2001 is offline
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Join Date: Aug 2010
Location: Burlington,Ontario,Canada
Posts: 186
Potassium levels...

Several years ago I had pain and stiffness beginning in fingers of both hands; Doc put me on OTC APO-K. Gave relief over several months. Perhaps hand pain is an indicator of low K level. I don't think it's directly related to MDS
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Ric: Low-risk MDS (blasts <4%); 4 cycles Revlimid no positive response; PRBC transfusion dependent; so far, 392'units' over 8 3/4 years; BMB #4 (15/04/01) shows evolution to AML (blasts 20-30%) 47,XY,del(5) (q22q35),+21[24][cp24]/46,XY(1).
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Old Thu Feb 13, 2014, 11:18 PM
MaryS MaryS is offline
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Join Date: Nov 2013
Location: Herndon VA my father in New Orleans,La
Posts: 24
Hurting hands

I appreciate your time in responding. I will tell my mother
About what you both said and have him tested for both. They really hurt him and
Are very stiff.
Thank you!
__________________
Mary, daughter / caregiver of Bob age 77; on Oct 1 2013 dx with MDS/MPN overlap +Trisomy. Jak2 at d< 5 blast. , and on March 1 2014 Dx with AITL non Hodgkin's Lymphoma.
Tx: decitabine/prednisone/Jakafi?
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