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MDS Myelodysplastic syndromes

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Old Tue Dec 2, 2008, 08:11 PM
Suzanne Suzanne is offline
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Location: Long Island, NY
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Platelets, Vidaza, Breast Biopsy......

Ugh, I don't know where to even begin. My mother stopped the TLK-199 trial because it really wasn't helping her counts and it made her sick to her stomach. They decided on Vidaza but she needed 3 weeks off the TLK-199 trial to get it out of her system. Needless to say, she still hasn't started Vidaza as of yet. Mom is transfusion depended, 2 units every 2 weeks. In the interim she goes for a mamography and lo and behold there are calcifications as well as a density in her breast. They give her a series of 4 neupogen injections to ready her for the biopsy since her Neutrophils were at 0.6. The biopsy windes up getting canceled because it has to be done in a radiologists office and the secretary in the office made a mistake when scheduling her appointment. It is now set for this Thursday. More, hurdles..... She goes to get blood taken today to check her counts to make sure we are ok for Thursday and her platelets are down to 42... they were 79 on Friday and 135 the week before. We are very worried. She had a bone marrow biopsy a little less than a month ago and it showed 5% blasts and everything else looked ok. Now, I find myself worrying if this is transforming. Is this how it transforms or is it normal in this disease to have counts fall like this? How do you treat 2 diseases at one time? Her spirits are so bad right now, as a matter of fact so are mine.
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Mom 69 diagnosed with MDS RA 3/08
TLK-199 started 7/17/08 - no response
Vidaza started 12/15/08 - no response
Dacogen started 01/10 - no response
Bone Marrow Biopsy 10/10 - 13% blasts
Bone Marrow Biopsy 12/22/10 - 45% blasts - AML
I have an angel 1/4/11

Last edited by Suzanne : Tue Dec 2, 2008 at 11:30 PM. Reason: content
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Old Wed Dec 3, 2008, 02:21 PM
Birgitta-A Birgitta-A is offline
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Location: Stockholm, Sweden
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Platelets, Vidaza, Breast...

Hi Suzanne,
You know calcifications in the breasts are very common and often benign. They are usually degenerative changes resulting from old injuries, inflammations, or aging of the breast arteries. Hopefully the biopsy will show that both the calcifications and the density donīt need any treatment!

Platelets are a problem - the count goes up and down and we canīt understand why. We can treat low red blood cells and low white blood cells but still wait for an effective drug for our platelets. 42 is not so low and your mother can always get a platelet transfusion.

Neutrophils can fall due to any type of infection - I am taking Neupogen 2 injections/week since 15 months and have been transfusion dependent since dx 32 months ago. My platelets are low - last count 39 - but my disease seems to still be stable.

Good luck with the biopsy!!!
Kind regards
Birgitta-A
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Old Wed Dec 3, 2008, 02:35 PM
Suzanne Suzanne is offline
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Join Date: Mar 2008
Location: Long Island, NY
Posts: 48
Can platelets fall this quickly? They are drawing blood again today, can't wait to see those counts.
__________________
Mom 69 diagnosed with MDS RA 3/08
TLK-199 started 7/17/08 - no response
Vidaza started 12/15/08 - no response
Dacogen started 01/10 - no response
Bone Marrow Biopsy 10/10 - 13% blasts
Bone Marrow Biopsy 12/22/10 - 45% blasts - AML
I have an angel 1/4/11
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Old Wed Dec 3, 2008, 02:46 PM
Birgitta-A Birgitta-A is offline
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Join Date: Oct 2007
Location: Stockholm, Sweden
Posts: 1,918
Platelets

Hi Suzanne,
Yes, platelets can fluctuate. I wrote to Anne a minute ago about drugs and food that should be avoided when you have low platelets. Try to control that your mother doesnīt eat anything that can decrease her platelets.
Kind regards
Birgitta-A
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