New Dx

[Faye R]

Hi I've been given a new DX RAEB-2
Blasts 8% with 11 rounds of azacitidine
Cellularity --Moderately hypocellular overall. Reduced number of megakaryocytes and markedly reduced number of mature neutrophils. Granulocyte's left-shifted with abnormal localisation of immature precursors (ALIPs)
I'm having my 12th round of azacitidine 100mg they would not put it back to normal which would of been for me 130mg.

[Cheryl C]

I'm very sorry to read this, Faye. Is your MDS primary or secondary (ie result of prior treatment with chemo or radiation)?

[Chirley]

That's not good Faye. Any talk of a transplant?

[Faye R]

No Chirley They won't do that here unless you are under 60 years of age, well that's what I've guessed is happening and

[Faye R]

and I'm O.K. with that.
Had another sub cut to-day everything is going A.O.K. the last sub-cut they must of struck a nerve boy my leg ache last night.
I'm having aza every 5 weeks now they have said it is a fine line between over and under dosing me. I have been fighting this for 8 years now golly time has flown doesn't seem that long ago. We have gone back to the juicing again, carrots beetroot apples and ginger, with V.C hoping that it will bring up the counts especially the wbc.
Blood counts now read
Hgb ---- 103---- not bad
Haematocrit---- 0.31--- O.k. could be better
MCV ---113---for last year this is about as good as it gets
MCH----38--- the same
Platelets---40---dam I wish they would stay up
WBC---0.8---going down dam
Neut----0.22 I've been lower than this also have had them a lot higher I guess this is the reason why they are worried about over dosing with chemo
Lymphocytes---0.49---not great
Monocytes---- 0.04--- I think they are very low
Eosiniphils---0.02---??????
Basophils---0.03---???????
well this is my lot take care very one I'm keeping my chin up and determined that this won't beat me.

[Faye R]

until I was told I had MDS I was a healthy person, Had sinus and slight vertigo & tinnitus work related I sure O for ear plugs not even heard of in my day.

[Chirley]

Faye 60 is far too young for the cut off. Can you get over here to Australia? We have a reciprocal health agreement and you should qualify for a transplant here up until 70ish if your health is otherwise good.

[rar]

Transplant at age 73. 100% engraftment. Mild to moderate GVHD.

Ray

[Bossywife]

Our doctor in Canada told us up to age 70 for Stem Cell Transplant. My husband is very active though, plays hockey and works a lot on our farm, as well as a job with a lot of walking.