MDS secondary to AML

[truthlover]

Hi

In 2010 I was diagnosed with AML (M3), also known as APL. I completed treatment in March 2013. Unfortunately I was diagnosed with MDS a few weeks ago. It is Intermediate-2 to high risk. We are still waiting for the genetic test to come back to determine the type. My doctor has started the process for an urgent BMT.

Right now my neutrophils are at 0.3, platelets 60 and hemoglobin around 118, blasts 12%. I start Azatadine tomorrow.

Is there anyone else who has secondary MDS?

[billyb]

My wife has Therapy Related AML which the kind of the same as far as being classified, maybe you have less blasts this time thats why there saying MDS, it is good news that your doctor is starting the process for possible transplant, we will be praying for you. As you allready know, since you have been down this road before, be careful ....your Neuts are low and you platlerts are getting there, so dont freak out, you have been through this.....you can do it again, try to stay possitive and keep us posted.....you are not alone....Billy and Tina

[truthlover]

Thanks so much for your support! You'll note in my signature that I now have the final diagnosis. I had my first appointment at the transplant clinic on Friday. Still waiting for the HLA test results. Then the search begins. Today I had my sixth injection of Vidaza. That is going well.

Friday my employer, the government of Canada, informed my that if I do not provided a "reasonable" return to work date by August 9, I will be "terminated" for incapacity. So, if I live, I may be unemployed

I am fighting it so let's hope I win.

My best to you and Tina

[Lbrown]

Hi Michelle,

I work with the govt too. Don't you have disability?

I hope it all works out for you.

Deb

[truthlover]

Hi Deb

I do have disability and I have no trouble with that. The issue is that, when I recover, I will have no job to return to. I'm also unlikely to get health insurance again given my history. I do not relish the idea of being a 44+ old woman looking for a job after 4+ years on sick leave. The insurance company will support me but I am too highly educated to retrain and will have challenges finding work in my former area of work.

Thanks for you good wishes.

Michelle

[Lbrown]

Hi Michelle,

What is happening to your job? I know what you mean about trying to find another one. I am 49 myself, and a term employee. I am ok here but I feel overwhelmed thinking about what if I needed to get a new job.

Deb

[Chirley]

I lost my job too but not because of anything my employer did. I had income protection insurance that didn't want to keep paying so they got medical reports from my doctors and held an internal hearing and decided that I was permanently disabled and therefore not entitled to any more income protection. (It was cover for temporary conditions up to two years).

Due to being deemed totally and permanently disabled my employer could no longer hold my job for me (Government job also). After 26 years with the same employer I was told I had to resign. I was devastated.

I'm on a disability pension now which is barely adequate. I do have my Superannuation which I haven't touched but the disability pension stops when I reach 65 and the aged pension starts. At that time my savings are taken into account and I won't be eligible for any pension at all. So I have to keep my Super savings intact for later on. This makes life financially difficult now because being disabled is quite expensive. It cost me over $1000 just to have two doors widened for my wheelchair. The wheelchair was almost $6000, the stair left was $5,500 etc etc. not to mention ongoing costs associated with not being able to do things yourself for instance, gardening and mowing. There is no financial assistance for these costs which able bodied people don't have.

I'm not complaining and I'm grateful that the 42% income tax that I paid the majority of my working life is at least paid back (in part) by a disability pension. I'm just saying that life doesn't always go the way you plan.

At least I can sleep in on winters mornings

Regards

Chirley