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MDS Myelodysplastic syndromes

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  #1  
Old Sat Aug 27, 2011, 12:52 PM
freedom99 freedom99 is offline
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Location: Leamington, Ontario, Canada
Posts: 40
MDS to AML

For my wife:
Changes from July 4 2011 to August 25 2011
WBC 7.4 to 37.1---- x10^9/L
RBC 3.35 to 3.16----x10^12/L
HGB 100 to 93------g/L
HCT 0.294 to 0.267
Platelet 7 to13 x10^9/L
MPV 7.0 fl to 9.1 fl
Neutrophils Relative 48.10% to 0.38.0%
Neutrophils Absolute 3.61 to 14.1 x10^9/L
Lymphocytes Relative 32.80% to 10%
Lymphocytes Absolute 2.4 to 3.7 x10^9/L
Monocytes Relative 17.30% to 1%
Monocytes Absolute 1.3 to .4 x10^9/L
Eosinophils Relative 1.5%--- toNot measured
Eosinophils Absolute .1 x10^9/L---- toNot measured
Basophils Relative .03%----to Not measured
Basophils Absolute 0.0x10^9/L-----to Not measured

Additional readings on August 25
Metamyelo.Relative 2%
Metamyelo.Absolute .9 x10^9/L
Myelocytes Relative 9%
Myelocytes Absolute 3.3 x10^9/L
Bands Relative 5%
Bands Absolute 1.8 x10^9/L
Blast Cells Relative 22%
Blast Cells Absolute 8.2 x10^9/L
Smudge Cells Relative 13%
Smudge Cells Absolute 4.8 x10^9/L

Note: Platelets are maintained at 20 x10^9/L and HGB at 80 g/L with transfusions of platelets twice a week and RBC's twice a month.
August 25 the platelet sufficiency is decreased

August 26 started on Hydrea 500mg one capsule per day

Not on any other chemo treatment except Vidazza for the months of Dec. Jan. and Feb.

Without the blast cells a week ago the doctor said that it had not progressed to AML and Hydrea would suppress the platelets even further.
Now today the doctor's nurse odered Hydrea but it seems a very low dose with may not suppress the platelets but will the low dose do anything.
With the blasts, smudge cells, bands, myelocytes and metamyelo showing up today it looks like a prosgression of the MDS into AML
Doctor said to prepare for a decline in health.
At present there are few symptons.
Have an appointment on Sept. 12
Have blood work twice a week for monitoring.
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Wife 63, June 2010 MDS (refr anemia - excess blasts type-2) PLTs 11,000/μl with giant forms 2 TF/wk. Hgb kept at 80g/l with 1TF per 2 weeks. 9% blasts 2 cytogenic abnormalities del(5)(q22q35) + inv(20)(p11.23q11.21) 3 cycles Vidaza no effect. June 2011 to AML WBC to 67 blasts and Aur rods in blood.
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  #2  
Old Sat Aug 27, 2011, 02:04 PM
DanL DanL is offline
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Sorry to hear about the decline in your wife's numbers. I see that she only had 3 cycles of vidaza, which is a little unusual since most reports suggest a minimum of 6 treatment cycles. Hydrea is used to reduce blood counts, whites and platelets primarily, but it is a little unusual to see it as a primary treatment for MDS or AML.

What other options are you looking at for her? Have you visited or consulted with an MDS or AML center of excellence?

Best wishes.
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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. No longer experiencing nor treating CGVHD. Working on fixing long-term side effects of AVN in hips and cataracts in eyes. Life is good!
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  #3  
Old Sat Aug 27, 2011, 02:35 PM
evansmom evansmom is offline
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So sorry to hear about your wife.

All I can add is that I have a dialysis patient who also happens to have "Myelofibrosis" (I personally think it's MDS with few balsts present) and he's on hydroxyurea 500mg 3xday and it had no impact on his platelet count but did bring his wbc count down from 75,000 to 32,000 where he is now.

Hope the road gets easier for you and your wife.
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Nicole, mom to Evan (19); diagnosed SAA November 2007, hATG mid-November 2007, no response after 6 months, unrelated 9/10 BMT June 2008, no GVH, health completely restored thanks to our beloved donor Bryan from Tennessee.

www.caringbridge.org/visit/evanmacneil
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  #4  
Old Sat Aug 27, 2011, 03:07 PM
freedom99 freedom99 is offline
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MDS to AML

Thankyou to DanL and Evans Mom;
Thanks for such a quick response.
I did look up Hydrea and found it was used more for CML not
AML.
Cytarabine seemed more successful in tests than Hydrea for AML. The thing is that Cytarabine may only come in injections which may require hospitalizaion.
It's good to know from Evans Mom that the platelets where not reduced. With the platelet level at 6-16 x1o^9/l or 6-16,000 per dl there isn't a whole lot of room for decline.
Hydrea at 500mg 3x a day seems to be close to the dosage that's recommended. The recommended dosage is 20-30mg/kg for continuous treatment. For my wife that would be at the low dosage 1900 mg per day or close to 500mg 3-4 a day. With only 500mg 1x a day seems low but we'll see what the counts are next week.
The nurse said that Hydrea would also reduce the blasts. There are also Aur rods present. Will the Hydrea have any impacrt on those or just on the white red and platelets.
I also haven't been on here for a few months. When things are stable one forgets about the situation and almost goes into denial.
It's good to be here again and I already see a few situation where I can be of support or at least a listening ear.
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Wife 63, June 2010 MDS (refr anemia - excess blasts type-2) PLTs 11,000/μl with giant forms 2 TF/wk. Hgb kept at 80g/l with 1TF per 2 weeks. 9% blasts 2 cytogenic abnormalities del(5)(q22q35) + inv(20)(p11.23q11.21) 3 cycles Vidaza no effect. June 2011 to AML WBC to 67 blasts and Aur rods in blood.
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  #5  
Old Sat Aug 27, 2011, 03:47 PM
evansmom evansmom is offline
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The patient I was referring to - his blasts have disappeared on the hydroxyurea.
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Nicole, mom to Evan (19); diagnosed SAA November 2007, hATG mid-November 2007, no response after 6 months, unrelated 9/10 BMT June 2008, no GVH, health completely restored thanks to our beloved donor Bryan from Tennessee.

www.caringbridge.org/visit/evanmacneil
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  #6  
Old Sat Aug 27, 2011, 08:26 PM
slip up 2 slip up 2 is offline
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Best of everthing to you and your wife...
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  #7  
Old Sat Aug 27, 2011, 09:14 PM
freedom99 freedom99 is offline
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Location: Leamington, Ontario, Canada
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MDS to AML

Thanks
Evans Mom
and
Slipup2
My emotions are fine until I see the bloodwork report these last five times and I talk to the doctor.
Going for more forest hikes in the national park nearby works. Have to bring the bug spray though.
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Wife 63, June 2010 MDS (refr anemia - excess blasts type-2) PLTs 11,000/μl with giant forms 2 TF/wk. Hgb kept at 80g/l with 1TF per 2 weeks. 9% blasts 2 cytogenic abnormalities del(5)(q22q35) + inv(20)(p11.23q11.21) 3 cycles Vidaza no effect. June 2011 to AML WBC to 67 blasts and Aur rods in blood.
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  #8  
Old Sat Aug 27, 2011, 10:13 PM
slip up 2 slip up 2 is offline
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Freedom99...emotions...I think cancer invented that word and rollercoaster has a whole new meaning...
there is a terrific Dr. Rena Buckstein at Sunnybrook Odette Cancer Clinic that is a specialist in MDS....
Just watch the bugs...
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  #9  
Old Mon Aug 29, 2011, 05:52 PM
freedom99 freedom99 is offline
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MDS to AML

Waiting for the pathology report done on the auer rods in the blasts present in the peripheral blood.
Seems to me that auer rods means AML but one can still have AML without auer rods.
Report should be able to tell us what AML subset is present here.
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Wife 63, June 2010 MDS (refr anemia - excess blasts type-2) PLTs 11,000/μl with giant forms 2 TF/wk. Hgb kept at 80g/l with 1TF per 2 weeks. 9% blasts 2 cytogenic abnormalities del(5)(q22q35) + inv(20)(p11.23q11.21) 3 cycles Vidaza no effect. June 2011 to AML WBC to 67 blasts and Aur rods in blood.
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  #10  
Old Tue Aug 30, 2011, 03:46 PM
freedom99 freedom99 is offline
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Join Date: Jun 2011
Location: Leamington, Ontario, Canada
Posts: 40
MDS to AML

Contact with nurse practicioner at the cancer clinic who related info from my doctor that the pathologist indicates that this could be progressing to AML. She indicates that the hydrea at one dose of 500mg per day should start lowering the WBC and the blasts in the peripheral blood and the bone marrow. I posed the question that if three rounds of Vidazza didn't reduce the blast in the bone marrow how could hydrea lower the blasts in the bone marrow. She indicated that it would. I'm not so sure.
WBC today at 41 x10^9/L up from 37 on the 25th x10^9/L
__________________
Wife 63, June 2010 MDS (refr anemia - excess blasts type-2) PLTs 11,000/μl with giant forms 2 TF/wk. Hgb kept at 80g/l with 1TF per 2 weeks. 9% blasts 2 cytogenic abnormalities del(5)(q22q35) + inv(20)(p11.23q11.21) 3 cycles Vidaza no effect. June 2011 to AML WBC to 67 blasts and Aur rods in blood.
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