[txnmomma]

Donna.. well, I think at his next appt. I am going to go with him and see about talking to the dr. I am wanting to see about getting a classification. I looked on a website and know there are at least 4 dif. classification of MDS.

The more I talk to my dad, the more he is open to other options [which to me is a + ]

Alexa.. I think you posted my exact thoughts. The more I find out about MDS, the more scared I get, but at the same time. I NEED TO find out the info and find out exactly what we are dealing with. For my sake and for my dad’s sake.

[txnmomma]

Donna.. WOW! This seems to be all my dad’s dr is offering him. *shrug*

It’s frustrating, b/c I wish he would do more for my dad, this makes me want to find a MDS specialist.

[txnmomma]

Donna.. in your siggy it says..
reg, tx

what does that mean?

Did your mom have blood transfusions?

[txnmomma]

Donna.. Ok- I learning so much about this.

The closest COE is in HOuston. MD Anderson. His limitation is his ins and it being covered…BUT at the same time. He doesnt have alot of $$ to just go to Houston for at least a consult. I am encouraging him to go no matter what.

As far as classification, he doesnt know what it is yet. He will be talking to his hemtalog at the next appt. He is “all for” looking into a MDS specialist.

In some weird way, I am really researching as much as I can about this and really getting onto [in a loving way] him about taking a more Active approach to this.

So the next step is..for me- I am going to call the MD Anderson.

His RBC was 2.3, White was 2, HGB was 13
The crit was ok and I cant remember the plate count.

[txnmomma]

Quote:

Has your Dad been to a Center Of Excellence for a consultaion and treatment options.

Honestly, I am not sure exactly what his options are or what the Center of Excellence is.

I am this new to MDS and totally clueless

[txnmomma]

Thanks everyone for the welcome!!

Sarah.. my dad is 55yo. Not sure about the classification- you mean the classification of MDS. That’s what I am not sure about. What is the classif.? Help..LOL His was dx’ed with really bad anemia after neck surgery in 2001. He also has DVT.

His hematologist doesn’t specialize in MDS-just a reg. hematologist. This dr dx’ed the MDS thru a bone marrow test last yr. But after reading some posts here- I think I will encourage him to see a hematologist who specializes in it OR.. I will flat out talk to his hematol. and tell him- I am wanting to see about a one with the special.

Jody.. his counts are about 1-2’s.. on everything.. his WBC, RBC, HGB.. really really low. But this is what I cant find. DO you know the normal ranges of the WBC, RBC, HGB??

Oh and he has had a blood transfusion [2 pints]. This DID help ALOT for a few days- counts went upa little- he got some color back into his face b/c was SOOO VERY pale before this. He will prob be needing another tranfus. soon.

Oh, forgot to add this- he was Thalidomide for a short time and responded to it, but the side effects for HIM were just horrible. SO he is off it.

Also got a plasma tranfus from his blood being TOO thin. He is on coumadin.. and his PT/INR was really HIGH- his blood was like water.

[txnmomma]

Quote:

complained of having cramps in his stomach and pain in his feet. Not sure if these are side effects of thalidomide.

My dad had the same complaint.

[txnmomma]

Hi there..

My dad was on Thalidomide for approx 2 months. For him, the side effects were horrible. They showed sligh increase in his counts.. the WBC and also the HGB.

He was taking 200mg a day.. at night. The sleeping part helped him tho. After being hospitalized for side effects, his dr lowered the dosage to 50mg and it still was too much for him.

The side effects were too evil for him .. to continue the treatment. The optical nerve was inflammed causing double vision, he was sick all the time [bronchitis], fever, sleepy, cold sweats, etc. Basically, the side effects were too much for him. He is off it now.. and taking something else.

Hope your dad does well with the Thalidomide. For some its works, for others it doesnt!!

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