Low risk MDS with declining numbers

[maggiemag]

Hello to wife of Jack. I'm sorry you lost your husband and had to go through this with his MDS. Yes, several toxins and prior chemo certainly are known to cause MDS. The incidence also rises with age (also diabetes and heart disease). But I don't think that most cases are caused by environmental factors. While there is a great deal of research going on, most cases have no known cause. Here is a link to cancer.org that addresses this issue.:

http://www.cancer.org/cancer/myelody...es-what-causes

Some things just happen! I choose not to focus on the "why", but rather on the "living". Certainly those who were exposed to the known toxins have a better idea of the cause of their MDS.

[bailie]

Paul,
The transplant process itself is not something to dread. I slept through the actual transplant. There was no pain involved for me. It was mostly being patient with a different temporary pattern of life. Little things like regulating sleep, using the shower, eating and drinking. I did experience weakness which I wasn't comfortable. It was definitely worth the experience.

I seem to be doing well with the Vidaza and Sprycel, but the weakness is very similar to the first month following transplant. I would say I am not doing well, but tolerating the situation while hoping that the weakness gets better.

Keep us posted so we can offer suggestions for you if you want them.

[PaulS]

Thanks Bailie - I will keep you posted.

Sorry you have fatigue - I hope your strength returns. Is the plan to keep you on he drugs indefinitely - or to eventually stop them if your counts/marrow seem ok?

Best,
Paul

[bailie]

The plan will be to keep me on Sprycel the rest of my life and probably Vidaza also. My body seems to react very well to the Vidaza. The fatigue is an expected side effect from the Sprycel and hopefully will get better with time. I have the Philadelphia Chromosome (9;22) on three chromosomes which seemed to have come out of nowhere at about Day +230. It is a primary indicator for CML. It is very rare to have the Philadelphia Chromosome with MDS and AML. My greatest hope is that I have CML and not MDS or AML at this time. CML can generally be controlled for several years with Sprycel. Realistically, I probably have all three which would not be good. My biopsy results have been difficult to understand because they are inconsistent for interpretation. I will have BMB #13 in a couple of weeks, maybe that will be the charm.

[PaulS]

Sorry you have such a tough road - hopefully the fatigue will get better and maybe they'll figure something else out over time. Until then enjoy life as best you can - you're in my thoughts and I wish you the best. paul

[mdhihwjv]

Originally Posted by maggiemag

Hello to wife of Jack. I'm sorry you lost your husband and had to go through this with his MDS. Yes, several toxins and prior chemo certainly are known to cause MDS. The incidence also rises with age (also diabetes and heart disease). But I don't think that most cases are caused by environmental factors. While there is a great deal of research going on, most cases have no known cause. Here is a link to cancer.org that addresses this issue.:

http://www.cancer.org/cancer/myelody...es-what-causes

Some things just happen! I choose not to focus on the "why", but rather on the "living". Certainly those who were exposed to the known toxins have a better idea of the cause of their MDS.

Diabetes and ischemic heart disease are linked to AO. My husband's blood problems began at age 58 - much younger than the average age - and doctors were confused at first. This was the beginning of his MDS. I feel it is important to know the cause. In the past, some research has been manipulated to protect Monsanto, Dow Chemical, and the government.