Rapid progression of mds

[Larsonec]

My father is 79 and was dx with mild level mds a few months ago. He started declining almost immediately and now get transfusions twice weekly, usually platelets and rbc. He has bern on procrit for a month or so which doesnt seem to be helping. He just started prednisone a few days ago which he was optimistic about but now started feeling bad again today. His counts, which i am getting through email from my mother are: platelets 6000, rbc 27, white 3+. not sure if she is abbreviating some of those counts. I am long distance so dont have a sense on why his condition is declining so rapidly. I would appreciate any advice on what types of treatments should be next for him, or any advice on what i should ask his hematologist when i go to visit next week. Thanks for any input.

[Birgitta-A]

Hi Larsonec,
At the home page of this forum you will find info about MDS.

Many patients and relatives try to follow the counts. The most important are hemoglobin, white blood cells, a type of white blood cells called neutrophils and platelets. The normal values are written at the same line as the patient's results.

Then you can see questions to ask the hematologist at this link:
http://edition.cnn.com/HEALTH/librar...s/DS00596.html
for example:
What type of myelodysplastic syndrome do I have?
Will I need more tests?
What is my prognosis?
What is my risk of leukemia?
What are my treatment options?
What are the potential side effects of each treatment?
Is there one treatment you feel is best for me?
I have these other health conditions. How can I best manage them together?
Are there any restrictions that I need to follow?
Are there brochures or other printed material that I can take with me?
What websites do you recommend?

Remember that infections can decrease all counts - your father has to be very careful. Many drugs can decrease platelets - avoid pain killers if possible.
Kind regards
Birgitta-A
73 yo, MDS Interm-1 2006. Supportive therapy with blood transfusions, Neupogen for low white blood cells and drugs for iron overload until 2010 when I started Thalidomide + Prednisone with positive effect.

[Neil Cuadra]

When you ask "Is there one treatment you feel is best for me?" be sure to ask why the doctor recommends that treatment vs. other treatment choices. Every choice (including doing nothing) has risks, so understanding the tradeoffs is the key to making the best decision.

[mri7853]

I was diagnosed with MDS in 9/10. My hematologist began treatments with 250 mg of B6 every day, but I basically had monthly blood transfusions beginning 10/10 through 7/11. The next treatment was Aranesp shots over a period of several months which did not work. I began infusion treatments of Vidaiza April, 2011. Finally, October, 2011, my counts finally went up.

My hemoglobin count in January, 2012 was 11.3. My March hemoglobin count had gone down to 10.3 was a little disappointing.

I think my worry at this point is that I don't keep dropping. My hematologist had informed me that even if the Vidaiza works, I may have to have at least two transfusion a year. He has never said anything to me about my future. I think he does have another patient on this drug and she has been on it about three years successfully. I have never asked my hematologist about my future, and perhaps, that is a "crystal" ball question. I am presently 59 years of age, still working full-time.

Would love to hear from anyone else with suggestions/comments!

Thanks!

[bebop]

I would ask your mom for permission to talk to your dads dr. it sounds like my dad in the last few months. dads turned into aml towards the end. if you would like to pm I will be here for you.

[Larsonec]

thanks for the replies. I met with my fathers doctors when I went home to visit last week. Not a lot to update on other than they are considering treatment with Vidaza, possibly next week. He was hospitalized early this week after a syncope-like episode. He apparently now has elevated liver counts and possible spleen enlargement. I am presuming that this is due to iron toxicity, but that has not been confirmed. His doc is advising against treatment with Vidaza and just to give supportive or no care. From what i have read, Vidaza is indicated for high risk MDS, but does anyone have experience with how well or not this drug is tolerated by a debilitated patient? I may post this as a general question too in case someone is lurking but doesn't look at my original post.

[bebop]

my dad chose supportive care only due to him only having one kidney and his age. he was 80 at diagnosis. he was diabetic as well and some other health issues. with his kidney there was a chance of further damage to the one he had left.