Opinions

[Robert C]

I have been diagnosed with Type II, Intermediate since January 1st, 2007. I was treated with Vidaza for 5 months, but had to stop because of toxicity. Since June I have had 2 Red Cell Transfusions, One July 20th and one Sept 20th. I have had no other medications related to MDS. Do any of you feel this is common,or do I need to suggest something to the Doctor.
9/17 WBC=0.9 9/24 WBC=1.4 10/1 WBC=3.8
HGB=8.0 HGB=10.7 HGB=10.4
Platelets=28 Platelets=20 Platelets=18

[Neil]

Hi Bob,
Has your doc provided a blast level?
Have you discussed either Procrit or Aranesp to boost red counts?
Dacogen might function in place of Vidaza.
Did the doc comment on the increase in WBC?

[Robert C]

No Discussion about drugs, Only said that the Bone Marrow is dying off.

[Zoe]

Bob,

Who are you seeing? How familiar are they with MDS? There are a lot of options which could be considered still. Your wbc and hgb have come up. Maybe from the Vidaza? Aranesp or Procrit may help more with hgb. Knowing your blast count would help also. Did it increase or decrease after the Vidaza? Do you have any chromosome abnormalities? Do you have problems with bleeding?

I know, lots of questions, but that is the nature of this syndrome because it varies so much from person to person.

How does your Dr. respond to questions? Will he discuss with you?

Zoe

[Robert C]

Just discussed counts with doctor. He is not experienced with MDS. Blood Blasts started 8/27,9/4,9/10 @ 1%, 9/17 @ 2%, 9/24 @ 35%, 10/1 @ 50%, and 10/8 @ 55%. The Vidaza peaked in April as far as beneficial effects were concerned, and Blood transfusions are the only thing taken to increase Red/Hemoglobin counts. No bleeding yet, He does not want to tranfuse Platelets unless I am bleeding.

[Zoe]

You might consider finding a doctor who is experienced with MDS. New treatments have come out recently and research is ongoing. It is great to have someone who is up on new info. I really appreciate that I can ask any question and not stump my MDS doctor. Not that I am trying to stump her, but I can always get my questions answered.

Your blood blasts are rising quickly. What is your bone marrow blast count?

Ask lots of questions, here and of your doctor. Educate yourself and be active in your treatment. Please keep us posted on how you are doing.

Zoe

[Terri]

Have they considered increasing the Vidaza Doseage. 5 rounds of Vidaza does not seem like a lot. Bob had been on it for almost three years before it stopped working. It kept the blast down always, but the bone marrow finally gave out and the Platelets could not come up
I would look into a second opinion and just keep pushing the dr for questions. Have they done a recent Bone Marrow biopsy?

[jga_socal]

You should look into getting referred to a oncologist/hematologist doctor. The CBC count changes you are reporting over only 2 week period raise questions. Your Hbg went from 8.0 to 10.8 immediately after your 9/20 transfusion. Since a unit of blood will raise your Hgb around .85 this seems to indicate you were transfused with 3 units. From everything I learned in my 35 units, no more than 2 units is safe unless the good Dr. thinks your Hgb is so low as to be an immediate danger. Getting too many units at one sitting can result in lethal blood clots. (Catch 22). Your WBCs rose after the transfusion which makes me wonder whether your transfused blood was leuko reduced. It should be. Your WBC’s more than doubled the week after. This could also be due to your body fighting an infection. Your Hgb loss over the 8 day period indicates to me that your marrow is still producing around 50% of your requirements. You platelets are def. in the danger zone. You should be seeing little red welts appearing on your skin at your levels. Your peripheral blood blast counts look wrong, increasing like that. You appear to have the Pancytopenia form of MDS, all 3 cell lines are messed up, like me. If I had the number you are reporting, I’d be all over my doctor for answers. How do you feel? Why dont you go over to the ‘Professional Member Forum’ and ask them. Oops! No one posting there.

[gj]

Bob

I agree with a lot of the above people that you should seek a second opinion from someone familiar with MDS. With the changes in your blasts you could also mean a progression to AML and needs to be treated.
There are too many unanswered questions with your situation. If your doc is reluctant to recommend someone you should check other hospitals, or I believe there is a Mayo clinic in Arizona. Check the NCI for a center of excellence or look up Revolution Health to see if they have a recommendation for an oncologist in your area.
Wishing you the best.

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