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MDS Myelodysplastic syndromes

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  #1  
Old Fri Oct 19, 2007, 09:06 AM
Linda Linda is offline
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Location: Goldsboro, NC
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Not good news

10-19-07
Hi all,

Bob is in the hospital again. He went in Monday due to Hemoglobin at 6.4, and platelets at 4.4. He got his third BMB, and today the doc said that it didn't look good. He didn't go into detail,because he didn't have all the results back. I guess we will get the rest of the info either tomorrw morning or Monday.

The doc told Bob that we would just try to maintain either at the hospital or at home, and that he could go home as soon as he wanted to.

He has pneumonia, and is getting IV antibiotics for that. He is right now recieving a porta-cath. Of coarse, he has gotten quite a bit of blood, 6 units, and 2 packs of platelets since Monday.

His RBC is around 2.5, WBC is around 1, and Neutrophils are around 0.1. This has been the same for around 6 weeks. He is not responding to neupogen.

Will keep you all posted.
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Linda, Wife of Bob, dx REAB-1 19 Jan. 06. Beginning numbers 19% blasts, Vidaza for 10 cycles then stopped responding, as of Apr 07 REAB-T Blasts at 20 (AML). 2 cycles of Dacogen May and June, 3rd in Sep. Counts bottomed out (WBC and Plts). BMB in Oct. showed blasts at 51%. NC
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  #2  
Old Fri Oct 19, 2007, 02:04 PM
Ruth Cuadra Ruth Cuadra is offline
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Linda,

Sorry to hear that Bob's situation is so dire. He's lucky to have you in his corner. We're thinking of you.

Regards,
Ruth
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Diagnosed AA 10/96, MDS/RA 6/98, MUD/BMT 10/6/98
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  #3  
Old Sun Oct 21, 2007, 06:13 AM
Birgitta-A Birgitta-A is offline
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Bobs situation

Dear Linda,
We all hope that Bob will overcome pneumonia with the best choices of antibiotics and that his WBC will increase even if he doesn´t respond to Neupogen. Has he recieved the porta-cath without complications?
Hugs to you both!
Birgitta
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Old Sun Oct 21, 2007, 09:22 AM
Linda Linda is offline
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port

The porta-cath seems fine. He had a temp, so they gave him Tylenol. They checked his temp a few times while in surgery. It is working.

I got to see Dr. Marshall yesterday. He was planning to send Bob back to Winston-Salem, to Bowman-Gray to see Dr. Powell. Bob asked him, this morning, if it is possible to be treated here. I guess Dr. Marshall will call Dr. Powell to see what he thinks. If he stays here then the BMT is no longer an option.

Bob isn't a quitter, but he wants some quality to the time he has left. We believe in miracles, but still getting ready for his time.
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Linda, Wife of Bob, dx REAB-1 19 Jan. 06. Beginning numbers 19% blasts, Vidaza for 10 cycles then stopped responding, as of Apr 07 REAB-T Blasts at 20 (AML). 2 cycles of Dacogen May and June, 3rd in Sep. Counts bottomed out (WBC and Plts). BMB in Oct. showed blasts at 51%. NC
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Old Mon Oct 22, 2007, 05:38 AM
Birgitta-A Birgitta-A is offline
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Linda, Wife of Bob

Dear Linda,
It is always difficult to chose between quality of life and most effective treatment - stem cell transplantion in Bob´s case. Perhaps he could stay at Wake Forest Cancer Center til he is stronger and then get the SCT at Winston-Salem?
Kind regards
Birgitta
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  #6  
Old Mon Oct 22, 2007, 10:41 AM
Tom M Tom M is offline
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I am sorry to hear that the news is not good. Do not lose hope. The way of the cross is a difficult road, indeed. I will pray for you both and ask God to keep you both in the palm of his hand.
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Tom, age 56, diagnosed with MDS RAEB Oct of 2006. Previously treated w/ vidaza, unsuccessfully. Revlimid successful 1 year. Progressed to AML 4/08 w/ 20% blasts, now in remission. BMT to take place 10/08.
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  #7  
Old Mon Oct 22, 2007, 04:01 PM
Vernette Vernette is offline
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Bob and Linda

You both are on my prayer list. Linda: For you to keep your strength. Bob:
For you to gain strength. God Bless both of you.
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  #8  
Old Mon Oct 22, 2007, 07:02 PM
Linda Linda is offline
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Thank you all for your prayers, and support.

Bob decided to stay here in Goldsboro for treatment, instead of Wake-Forest Cancer Center in Winston-Salem, so far away from family.

Dr. Marshall is overnighting the slides for Dr. Powell to go over. Just from the facts that Dr. Marshall told him, he was in agreement that the BMT is no longer an option. Bob's lungs and liver have deteriorated too much. Due to being in AML, either very strong Chemo or nothing are the options. Bob is not ready to stop treatment yet.

As of right now Bob is coming home tomorrow, and going back in on Monday to start Chemo. I am not sure what med, we will discuss options with Dr. Marshall on Thurs, or Friday after Dr. Powell lets him know what he thinks.


This has been quite a ride. The first year he did so well with Vidaza. Then he stopped resoponding, went to Dacogen. This never had time to work. His WBC, and Platelets got so low and never bounced back. So really he has had AML longer than just now. Probably at least since July or Aug. He stayed sick so couldn't even continue Dacogen.

I guess I have written enough. Sorry for going on and on.
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Linda, Wife of Bob, dx REAB-1 19 Jan. 06. Beginning numbers 19% blasts, Vidaza for 10 cycles then stopped responding, as of Apr 07 REAB-T Blasts at 20 (AML). 2 cycles of Dacogen May and June, 3rd in Sep. Counts bottomed out (WBC and Plts). BMB in Oct. showed blasts at 51%. NC

Last edited by Linda : Wed Oct 24, 2007 at 09:45 AM. Reason: spelling
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