Hi Linda,

Welcome to the sucky club, though it sounds like you've been a member before.  Crap, I can't imagine jumping out of the lymphoma frying pan into the MDS fire.

I had MDS but we didn't know it until it had transformed into AML (acute myelogenous leukemia).  So my treatment was for AML so I don't really know anything about living with MDS.

There are two things I can suggest and you can do them both.  If you'll click the "Living with..." link on the main menu page, you'll see a list of blood cancers and diseases.  One of them is AML where we have a lot of folks using Vidaza.  If you'll scroll down towards the bottom, you'l also see a catch all listing Myelodysplastic Syndromes.  You'll find some MDS patients there.

I trust you'll find the help and support you need here.

Blessings

Hi Linda,

I'm sorry you are having to go through this. 

I was dx with MDS (actually CMML which is considered MDS catagory) Jan 07 and have been on Vidaza.  I think your husband should do just fine with his level of energy.  The only thing I noticed when on Vidaza was the area around the injection site became tender and red.  I'm able to do my normal routine stuff.  That being said, everyone reacts differently to chemo.  I think if he feels well enough to work he should be able to do it without any concerns.  I asked about restrictions when I was first diagnoised and was told to go live my life.  Therefore I have tried to do just that.  There are times that "living my life "involves getting lab work and transfusions.  I hope he does well with Vidaza.  Let us know how things go.

Diann   

Linda,

Good luck to you and your husband,  I was diagnosed with MDS in 04/09, and started Viadaza  and started a chemo regiment the next week after having a chest port put in.  I have been doing really well, my white count has gone from 900 to approx 6,000 but that is with the help of a monthly shot of Neulaster (white cell booster).  All in all I have done exceptionally with the chemo regiment, no nausea but some cramps, and muscle pain.  I go for 7 days straight then have 3 weeks off.

This may or may not have helped, but hang in there and if I can answer anything or offer support just let me know.   My treatment plan was formulated at Duke Univ in NC, but I am taking the medicine locally.

Good luck

Steve

Hang in there Linda,  I struck out w/my family as to a match, but on 

the positive side on the national list they found 3 matches.   The 

plan now is to stay on Viadaza as long as it is working to avoid the 

BMT,  I get it through a chest port and have had no issues with 

redness in that I don't get an injection, so you may want to check out 

a port, but then again I go for 7 days straight, then typically a shot 

of Neulaster than off for 3 weeks with blood test every monday, then 

back onto Vidaza on the fourth week.  As to the levels I am getting a 

full dose, it took about 4 rounds of treatment and my levels started 

to really climb, ie, I was at 900 wbc, and last monday hit at almost 

8,000,  that will probably drop to 5 or 6 by next week, but it is 

still way up from where it was.

Steve