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  #1  
Old Thu Jul 14, 2011, 10:32 AM
Sally C Sally C is offline
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Hypocellular MDS with Grade 2 Fibrosis

Good morning!
Does anyone have any knowledge about bone marrow fibrosis? My husband's July bone marrow biopsy was about the same as one done in Nov. which showed Grade 2 Fibrosis. He has been taking Promacta since March. It has brought his platelets up to the low 20,000 which isn't setting the world on fire although it's pretty good for him. He has gone 6 weeks without a transfusion (trigger point around 10,000) which is a record since this started in Nov. 2008. Fibrosis is a potential side effect of Promacta but I would assume it hasn't caused a problem so far since it was Grade 2 in Nov. (Grade 1-mild; Grade 2-moderate; Grade 3/4-severe) Any information would be appreciated.
Thanks!
Sally

Last edited by Sally C : Thu Jul 14, 2011 at 11:54 AM. Reason: Additional info
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  #2  
Old Fri Jul 15, 2011, 06:55 PM
bebop bebop is offline
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I have a friend and his wife has the fibrosis. she was started on Thalomide and having great results for a few months now.
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  #3  
Old Sun Jul 17, 2011, 01:05 AM
LynnI LynnI is offline
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Hi,

I have fibrosis, gr 3, along with MDS RCMD. As of today I am 3 yrs tx independant from taking Valproic Acid. Having said that, I have been very very lucky because my counts are all in the normal range and I can lead a normal life.

Cheers
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Lynn: 49 yrs young, Female. Dx April 2008, MDS RCMD with Myelofibrosis Gr. 3/4. Was blood transfusion dependant. Treatment: Started Valproic Acid July 11, 2008, last tx July 17, 2008. 3 yrs tx independant, normal CBC's, Life is Good.
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Old Sun Jul 17, 2011, 07:09 AM
Sally C Sally C is offline
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Thank you Bebop and Lynn,
That is very encouraging. I wish you both the best.
Thanks again for the reply.
God Bless,
Sally
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  #5  
Old Tue Aug 9, 2011, 12:36 PM
Hopeful Hopeful is offline
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Hi Sally,

I also have Grade 2 fibrosis as found through reticulin staining. I found these interesting articles that say that reticulin fibrosis has no correlation with disease severity (and can even be reversible), whereas severe callogen fibrosis (trichrome staining) has more prognostic significance.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3031682/
http://www.ncbi.nlm.nih.gov/pubmed/17910625
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55 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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  #6  
Old Wed Aug 10, 2011, 08:06 AM
Sally C Sally C is offline
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Hello Hopeful,
Thank you so much for responding. This is good information to know - and the articles you sent are from NIH where Don has been in clinical trial since spring, 2009.
I did understand that Grade 2 fibrosis is reversible where the higher grades - described to me as marrow scarring - were not.
This makes me feel much better.
Thanks again so much for your response and the articles.
God Bless,
Sally
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