[jaxem]

my wife was given chemo propylactically following breast cancer surgery. almost 5 years to the day mds came. ironically, chemo is given to beat back the blast cells. we’re living in the stone age when it comes to fighting cancer.

[jaxem]

i went to this today in phila. celgene (revlimid) has developed small handbooks for patients; one explaining what mds is, and the other about what to expect from the drug. they basically wanted to know about my personal experiences and what i thought about the books. they want to refine the books for patients to better undestand what they will be going through.

[jaxem]

typical for some hospitals to spend 4 weeks for induction. how old is he? do you know what regimen they are using? did he get through initial chemo OK? you’ve got to get closer to remission if the sct is going to work. my wife went through 2 induction chemos but at same concentration. the 2nd round did nothing but hold her to 1st round level.

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carl
sorry to hear about your bad experience w/ dacogen. did you go through at least 4 rounds?

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birgit
look into getting the dacogen rounds at home. very convenient getting it done once/day for 3 hours/day for 5 days. sure beats having to check into a hospital, however, the 1st round will probably be done in the hospital to check her reactions to the drug. you’ll probably need at least 4 rounds. please e-mail me for what has worked for us.

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bluej
my wife was a school social worker but was forced to retire because of mds. the state of NJ and the NJEA considers the disease a disibility providing benefits accordingly.

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terri
any chance in switching him over to dacogen which is administered by IV & is a demethylating drug like vidaza? also, i believe vidaza can be obtained as an IV treatment.

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jonelle
Pharma has stated that dacogen be given for 4 cycles but it is up to the hematologist. get a good reason from the doc why 6 is required. unfortunately, the only way to see what’s going on is to do a bmb. the results should make the answer clear.

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hmmn
blast listing on a cbc printout? like others have said, the only way to count blasts are by manually counting them off a slide, or running a sample through a flow cytometer which runs the costs up, & is why it’s usually only done after a bmb.

i’ve never seen MID’s on a cbc but have seen each cell type specifically spelled out.

[jaxem]

stephen
really great to hear your good news. my wife is starting her 3rd round of dacogen on 5/7 & we have our fingers crossed.

[jaxem]

lizab
what kind of transfusions are you getting, rbc’s, platelets, both? normally whole blood isn’t given any longer with only the above given; wbc boost with either neupogen or neulasta.

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jack

sounds good to me! maybe mds patients should stay soused on red wine.

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connieore
have the rounds been continuous (4 weeks each)? have you had biopsies since starting the rounds?

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jan
so sorry to hear about the loss of your mom.

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