my 2 cents
 

I have mds. I was a mechanic for over 20 years. For years never wore gloves, washed my hands with solvents, carb cleaners, brake cleaners, benzenes, gasoline etc.. I remember many times just feeling sick I had absorbed so much gasoline or exhaust fumes. Gas running down my arms, heck I've even swallowed the stuff siphoning gas. Sounds like a likely cause, but my dad had mds/aml and was never a mechanic and was a health and exercise fanatic. My younger brother never the same exposures and his blood counts have started to drop. So who knows?? I know that stuff is certainly bad for you. I had lots of exposure to round up and other chemicals too.

It is so difficult to understand what might have been the trigger. Why haven't you had any treatments?

Good Question
 

The trigger, environment, luck, just cuz?
I'm on the cusp of treatment.
We are now watching counts every 2 weeks.
But how low do things need to get, though I'm in no hurry to start treatment if I'm feeling good. I was in hospital for 6 days a few weeks ago for infection. That was my first scare of having low counts. Getting tired of being germaphobe. Thanks for asking.

That is interesting that you could go this long without treatment. They told me I would have been lucky to have made it for ten months without treatment. I also have been feeling good and still walking/golfing. It is strange, isn't it. I just finished my second round of Vidaza and will have a BMB in two weeks to determine when to have a transplant. My numbers have deteriorated in the last two months.

Good luck, don't wait too long.

What were the determining points that indicated you needed to start vidaza?

Neutrophils
 

Hi Kyis,
Good that you are afraid of infections - you neutrophils are much too low. Perhaps you could ask for treatment with Neupogen or a similar drug that increases the WBC.
Kind regards
Birgitta-A
74 yo, dx MDS Interm-1 2006. Very severe fibrosis and tx dependent from dx. Positive results with Thalidomide 2010-2013. Now treated with Revlimid that has showed good effect.

Kyis,

My blast count was the primary reason from my bone marrow biopsy. Also, my whites, reds and platelets were low and the numbers were deteriorating.