[txnmomma]

Andrew.. I am so glad to hear your mom is responding to the Thalidomide. Thats great!

My dad was on Thalidomide at the end of last year and had to stop. The side effects for him were horrible. I mean really bad. He was hospitalized over Thanksgiving b/c of how bad they were..

BUT.. I am glad she is handling it well. Interesting how meds effect everyone different.
I hope her RBC’s cont to go up!!!

[txnmomma]

ok.. then I am going to call his dr in the morning and let him know. I am not sure that his dr is aware of it. At the appts that I go to-with him, he doesnt mention his fever at night. I dont know what my dad is thinking.

I know fever “generally” means infection. It just doesnt seem right for him to be getting reoccuring fever at night.

[txnmomma]

Quote:

She is The Myeloid Program Supervisor. The doc she works for is Azra Raza at Rush Presbyterian. She has an excellent grasp of various MDS treatments.

I agree with Neil.. Dr. Azra Raza is very knowledgeable about MDS. My dad has MDS and has emailed her on several occasions. She replies in 1-2 days.

I hope you find the answers you are needing. I am still doing the same with my dad and needing answers.

[txnmomma]

I have wondered the same thing about MDS and being hereditary. My father has it and I wonder about myself at times.

Is this a certainty that he got MDS b/c he was exposed to something in the area where he lives? Does this mean, I can be exposed equally.. and get MDS from being exposed not necessarily being hereditary.

[txnmomma]

Ok..Neil, this combination.. is ummm, interesting like you said.

So the Danazol..improves clotting ability- meanwhile the Coumadin is an anti coagulant. counters clotting.

now I am really puzzled at his dr’s treatment. But then again, the hematol rx’ed the Danazol and the FP rx’ed the Coumadin. I know for a fact, his hematolog knows that he is on coumadin. The hematolog was the one that ordered 4 units of plasma one Sat for a super high pro-time.

[txnmomma]

Oh wow.. I am gonna look into this one. Never heard of it!!

[txnmomma]

Neil…

Quote:

did a hematologist prescribe the Coumadin?
Is there any bleeding/bruising?

The coumadin was presribed 16 mnths ago @ Oct ’03 by his Family dr. He had 3-4 large clots in his leg. He doesnt have any bleedin or bruising. His PT is always checked and at one point about a month ago. He has given a plasma tx b/c his pro-time was about 120-130

Then in July 04 he was dx’ed with MDS. I have always wondered if there is a relation btwn the two.

[txnmomma]

Neil, ahhhhhh now my head is spinning..ughh- now I am confused. I guess I should just think of it this way.. everyone is different and meds help everyone differently.

With that said, my dad’s platelets appear to be ok. If I am correct, platelets help the blood clot [prevent and stop bleeding] This person in Fl needed Danazol for the platelet boost.

Before the MDS diagnosis, he was DVT. [Blood clots] He is currently on Coumadin for the blood clotting.

I think overall.. I am just hoping Danazol will start to work for dad.

[txnmomma]

Jody.. WOW, I read the link from your post.

Thank you! In fact, I printed it out so that my dad could read it..

[txnmomma]

Thank you!!

I will be looking at those links..

[txnmomma]

Carl, I see in your siggy about being on Thalid. Did it work for you? How is the Procrit working??

[txnmomma]

Neil,

Quote:

Again an experienced hemo and Irradiated/Filtered blood are an absolute must.

ever since you posted this, I have done some research on this kind of blood. I have learned so much about filtered blood. Its interesting! I can see how regular blood transfusions would be getting complicated over time. Thanks for the tip..

I have been getting my little list of ques ready for my dad’s dr. I am going with him on his next appt.

Anything else I should talk to his dr about??

I have so far:
MDS specialist
other MDS patients being treated
the need for filtered blood
Vidaza

[txnmomma]

Quote:

had very serious adverse side effects lasting for several more days,

if its to ask, what kind of side effects did you have??

My dad is going to be talking with his hematol. at his next appt about Vidaza.

[txnmomma]

Congrats on finding a match!! I am so excited for you!!

I dont have alot of info on BMT, but just wanted to say hope all goes with it!!

[txnmomma]

Neil, I am gonna keep your post. There is SO MUCH info. Thank you very much!!!

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