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#1
Thu Feb 25, 2010, 08:46 PM
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Monosomy 7 and 5q-
I just received a copy of my latest biopsy findings and although there has not been an increase in blasts
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Jill, 58 y/o female dx with MDS-U June 2008, IPSS:Int. 2. Allogeneic SCT May 25, 2010. Relapsed January 2011. Started Vidaza (azacitadine) Feb. 2011; Currently on cycle #58 , IV, 5-days every six weeks. WBC 5.3, Hgb 13.0, PLT 110 (2/16/18)
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#2
Fri Feb 26, 2010, 12:58 AM
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Hi, I understand you didn't ask your doctor about the extra abnormality and what it means regards your prognosis,
That' s exactly the kind of thing that I do. I think of questions afterwards and then I forget to ask next time, I get so cranky with myself sometimes, I think the anaemia must effect my brain. I had that platelet clumping problem once. At least the lab picked up that the platelets had clumped. I had never had a platelet problem then one day in day care I was told my platelets were very low and that I needed a platelet transfusion and repeat urgent bone marrow biopsy. As this meant that all 3 cell lines were now critically low, I was very worried. I asked for the blood test to be repeated and the results came back with normal platelets. It turns out they had clumped on the previous test and the results were totally wrong. I was very relieved and cranky at the same time. It made me realise that because the doctor wasn't surprised it's something he expects to happen at some stage. If or when it does happen for real I'll be more prepared mentally. I hope your repeat test is good.
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Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy. FISH reported normal cytogenetics but gene testing showed Xq 8.21 mutation Xq19.36 mutation Xq21.40. mutation 1p36. Mutation 15q11.2 deletion
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#3
Fri Feb 26, 2010, 12:07 PM
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I just received a letter from my doctor with the findings. I don't have another appointment until March 19 and will know more then. From my research on the internet, the prognosis isn't favorable.
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Jill, 58 y/o female dx with MDS-U June 2008, IPSS:Int. 2. Allogeneic SCT May 25, 2010. Relapsed January 2011. Started Vidaza (azacitadine) Feb. 2011; Currently on cycle #58 , IV, 5-days every six weeks. WBC 5.3, Hgb 13.0, PLT 110 (2/16/18)
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#4
Fri Feb 26, 2010, 03:31 PM
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Jill,
Try to remain positive. Remember that statistics are just statistics, they are usually a few years old, and there are always exceptions. You are young, which has strong prognostic value when going into a transplant. You are in good hands at Stanford. You have all of our support going forward! Stay strong and BELIEVE!
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58 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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#5
Tue Mar 2, 2010, 06:51 PM
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My cytogenics taken in 06 included monosomy7, and others, As you can see I am quite a bit older, but so far I have remained active and have only recently used prednisone to bring my platelets up. It also seems to raise the ANC, which have also been low.
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Active 81 yr old. DX 6/06 MDS Currently on a 2 wk series of 60 mg/day predisone to raise my platelets above 50k so that is safer for me to ski. Have complex chromosone abnormalities(monosomy7 and others Low WBC and platelets
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#6
Thu Mar 4, 2010, 09:05 PM
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Chuck,
Thanks for the info. I would like hold the transplant off for just a little while longer if possible, but from what I have read it is best to go strait to SCT with a finding of Monosomy 7. I will find out more at my next appt. My doctor was going to discuss my case with his colleages to get their opinion of when we should proceed. I have been to the pre-transplant testing stage twice now so I guess I should feel fortunate! It's great that you continue to be active. It's probably why you are doing so well. Keep it up! Jill
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Jill, 58 y/o female dx with MDS-U June 2008, IPSS:Int. 2. Allogeneic SCT May 25, 2010. Relapsed January 2011. Started Vidaza (azacitadine) Feb. 2011; Currently on cycle #58 , IV, 5-days every six weeks. WBC 5.3, Hgb 13.0, PLT 110 (2/16/18)
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