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#1
Mon Jul 14, 2014, 04:50 AM
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2nd opinion for MDS diagnosis - 2nd sample
Is a second opinion on an MDS diagnosis required? And should it be based on a seperately drawn bown marrow biopsy (BMB). After 3 months of searching for a solution, a BMB (Bone Marrow Biopsy) finally revealed MDS RAEB 2.
The issue is whether a second sample is required? We received a second opinion on the results obtained from the BMB. The haematologist said the sample was good. And there was no need for a second sample to be drawn. All blood results subsequently have been consistent with an MDS diagnosis. Much obliged and apologies for the numerous posts of (innane) questions.
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Alyasa, father aged 72, dx July 2014 RAEB-2, (10.5% blasts) on Vidaza, low WBC (<1) 
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#2
Mon Jul 14, 2014, 02:43 PM
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I insisted on a second BMB/BMA analysis from my original Oncologist...
Both came back within a close range at least... 1st showed 5.5% blasts, 2nd showed 3% blasts, but both had the same chromosomal disorders... None good... My BMT/SCT doctor reviewed all of the results prior to transplant, even thought my 3rd BMB/BMA came back 100% clean after two rounds of Dacogen... It is normal to question results, and you always should (but in a way that doesn't alienate your doctor)... My original Hemo was happy to give me a second BMB/BMA, he just said: "no one actually asks for one of these voluntarily..." The two were probably 6-7 weeks apart... Hope this helps...
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Married, father of three daughters; now 46; diagnosed w/ Major form MDS 6/18/2013; had low counts across the board; Multiple chromosome abnormalities; Finished 2nd round Dacogen 9/13; SCT - Oct. 31, 2013; Sibling match 10/10  ; 5.5% blasts down to 3%, now 1% (post BMT)
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#3
Mon Jul 14, 2014, 03:20 PM
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I had two BMBs within a week of my diagnosis. Both had very similar results and lots of fun.
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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#4
Mon Jul 14, 2014, 03:28 PM
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Quote:
Was the 3 month delay before or after the BMB? If it took 3 months to make a diagnosis *after* the BMB, then a second sample would be warranted.
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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
Mon Jul 14, 2014, 05:19 PM
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Nothing is required, but a second opinion is highly desirable. My first diagnosis was done by an oncologist who typically a dozen patients a year. His BMB was done with a hand auger. I sought opinions from 2 BMT transplant hospitals. They said the specimens were poorly prepared but agreed with the conclusion. MDS is not hard to diagnose - %blasts, WBC platelets and hemocrit. If blood counts in marrow and peripheral blood agree, and any outlying conditions eliminated, then the doctor assesses severity and treatment opinions. I have always received appointments with in a week. Again see doctors from world class doctors who see more than 100 per year.
In the past 3 months I have had 5 BMB's with one two weeks from now. Medicare pays for second opinions and encourages them. 6 years I had chest pain while exercising and over time received about as many misdiagnoses. The last one told me I had a 95% blockage in my LAD. A stent fixed it. I went to my VA doctor with my MDS and was told the waiting list for transplants was so long that I would die before I could be treated. You are your best advocate. Ray
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#6
Tue Jul 15, 2014, 03:56 AM
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Useful as always
@rar - two haematologists reviewed the sample. Only issue was the slight (0.5) assessment on blasts.
@Hopeful - apologies for lack of clarity. After three months of misdiagnosis the BMB showed what was going on. We visit a specialist practice that deals with MDS regularly. The doctors are good and knowledgeable, but very busy. So we will gently engage them, while checking and working with the wonderful people on this forum... Thanks so much!
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Alyasa, father aged 72, dx July 2014 RAEB-2, (10.5% blasts) on Vidaza, low WBC (<1)
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#7
Tue Jul 15, 2014, 07:59 PM
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2nd opinion
If it makes you feel better, than by all means get a second.
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 82 yr. old male. Diagnosed in 2003. Started Blood infusion 1/5/2004, average of 2 units every 2 weeks. Inject Procrit weekly 40,000 ML. I have had 344 units of PRC. E Mail leojean@comcast.net
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#8
Sat Jul 19, 2014, 10:30 AM
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The blast count of 10.5 is a pretty significant indicator of bone marrow failure. I've had multiple 2nd opinions, but the mds was never the question, it was and still is what treatment(s) and when. There is a lot of other info in bmb. Maybe even having a 2nd opinion based on report and new blood test maybe be enough for another dr. to easily confirm, plus a 2nd opinion might be nice to confirm proper treatment.
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Male 56, MDS 2008, pre SCT Hypocellular 5-30%, Normal Cytogenetics. WBC 500, anc 45, Blasts 15%, Platelets 45, HGB 7, RBCC 1.71, HCT 20.5, MCV 120. Became Transfusion dependent 3/2016. 5 cycles VIdaza started 3/14/16 which reduced Blast counts. . Marrow Transplant 9/1/16, Hereditary MDS/AML.
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#9
Mon Aug 11, 2014, 01:44 AM
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there are no inane questions, only inane answers.
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82 yr. old male. Diagnosed in 2003. Started Blood infusion 1/5/2004, average of 2 units every 2 weeks. Inject Procrit weekly 40,000 ML. I have had 344 units of PRC. E Mail leojean@comcast.net
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#10
Mon Aug 11, 2014, 01:46 AM
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MDS
The only treatment I have is 40,000 units of PROCRIT once a week. And 2 units of PRBC every couple of weeks.
__________________
82 yr. old male. Diagnosed in 2003. Started Blood infusion 1/5/2004, average of 2 units every 2 weeks. Inject Procrit weekly 40,000 ML. I have had 344 units of PRC. E Mail leojean@comcast.net
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