Frustrated with the tenths!

[Dick S]

Since first being diagnosed in 2006, I have been on a watch and wait list. Initially all three lines, or as they say "multilinial" were below normal. I have faithfully gotten a CBC every three months with a couple BMBs thrown in along the way. By "tenths" I mean at every CBC my three numbers, W, R, Hct, Hgb drop a tenth here two tenths there, but so far have not reached that so called "critical point" when they will feel compelled to do something. Word from the V.A. which I have found is also controlled by and dictated by Medicare standards they keep lowering the bar. Right now my hematacrit is at 30 and Hbg at 10. At one time I was told this was the point to start doing something/anything, but NO they now lower the standard to 29 and 9. What is frustrating is if and when I get there, what's to stop them from lowering it to 28 and 8. Do you see where I am going with this? The "tenths" drive me crazy. Am I wrong or should I just be content to be tired all the time and watch the "tenths" drop month after month and WATCH AND WAIT. I feel like I am in a cost/benefit numbers game. Arrrggghhhhhhhhhhhh!:(

[joelt]

Hi Dick,
I have been going to the VA for about 4 years disagnosed with MDS, they stopped watching and began treatment with Vidaza on 10/1/09 when my counts were at RBC 2.4, WBC 1.7, HGB 7.1, HCT 19.9, and PLT 17. I am scheduled for BMT as soon as all obstacles/infections have been taken care of. The red flag points for transfusion is HCT <24 and PLT <20. I am currently completed my 8th cycle of Vidaza after a 10 week layoff (all teeth were removed and other issues) and it's kinda like starting all over again. I am very thankful for the VA and know if it were not for them I would not receive a BMT, Medicare does not allow it for MDS.

[Dick S]

Joe, great to hear from you and glad you are getting the proper care you need.
Don't get me wrong, I am NOT slamming the VA 'cause believe it or not, I think I am getting good care from them and I like both my Primary and Onc.

What I found out is, the VA is a funded set annual budget operation, but they bill Medicare and can get their money back on me because Medicare is paid for by Medicare payroll taxes and they have no set budget. Keeps VA budget low. Problem is they have to follow the dictates of Medicare on old guys like me. Unfortunately I am too old for a BMT. My Onc. says that when I get bad enough, whatever that is, I will get Vidaza, but the waiting is what kills me. Maybe I should be grateful that it is slow acting ,cause the longer it takes, the longer I live. Dang it's hard though.
Good luck and stay in touch here Joe.:)

[Birgitta-A]

Hi Dick,
You know you could always participate in a clinical trial - there are many for MDS patients living in Florida for example this: http://clinicaltrials.gov/ct2/show/NCT01011283?term=mds+florida&rank=11

The problem with trials are that if the dose is to large for your bone marrow it can be difficult to reduce it and then they sometimes don't allow enough support for example Neupogen or similar drugs if your WBCs decrease too much.
Kind regards
Birgitta-A
71 yo, dx MDS Interm-1 May 2006, transfusion dependent, Desferal and Exjade for iron overload, Neupogen for low WBCs, Thalidomide and Prednisone for bone marrow fibrosis

[Julianna]

Hi Dick. Yeah I SO hate the waiting too! I hear ya...

Thanks for sharing. Nice to know I am not alone in the L O N G process of things. Even though I wouldn't wish it on my worst enemy.

I have basically put my health on the shelf (as much as one can) and try and live with what I have. Because BMT and treatment hanging over my head is often too heavy to carry. So, on with life I go. All the best, dear friend. :)

Jules

[Dick S]

Thanks one and all and Julianna. Sometimes life is not fun, but I guess it beats the alternative, right? I have pretty much resigned myself that eventually I will get a handle on my disease or it will get a handle on me, but the trick is to never give up. It's the frustration that's the killer.

Be kind to all people, for they too are fighting battles of which we know nothing about.:)