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#1
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MDS/Fibrosis
any info or help would be appreciated...MDS 2.5 years ago then 1.5 years ago MDS along with Fibrosis....my husband was on Vidaza for 9 months was trans free for about 6 and put all lost weight back on...then 1 packed red then 2 per week....about 2 months ago tried the combo Vidaza and Revlimid...only once.... infection set in and do not know where it is .....then spleen started really getting large and Plt 2 x per week and packed cells 2 or 3 a week....
Started low dose radiation to shrink spleen and it did, but now in hospital with infection again, last week CT showed lesions in the spleen....he is now in hospital with another infection and another CT today...we will know results tomorrow, maybe an abscess in the spleen. He was tested 2 weeks ago for JAK 2 and test came back to-day positive....looks like Fibrosis has hit number 1 spot and MDS is in number 2 spot... Thanks |
#2
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If fibrosis is becoming the primary diagnosis point, especially with the Jak2 positive, it may make sense to try one of the Jak inhibitors. Jakafi (ruxotlinib) is approved by the FDA for myelofibrosis, but there are several second generation trials that may be better. They are known to be effective in reducing spleen size and transfusion dependence, and are generally well tolerated.
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body. |
#3
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Thanks Dan....that is what we are thinking...we a have meeting with 4 Dr.'s tomorrow....we have to get the infection under control....
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