my partner's blood counts since 2000.

[georges]

Hello everyone,

Well, I've got time to kill until Nov. 6th bone marrow analysis results. I've been doing research in the mean time. I poured over my partner's blood test results since 2000. He is one of the most organized people you've ever met so it was easy to find these records. Here is what I found:

WBC: 2.8 which is relatively unchanged since 2000 when it was still 2.8 (it is a little below normal, yes?)
RBC: flirts with the normal or just below since 2000. Around 3.6 to 3.8 since 2000.
neutrophils: 1638 relatively unchanged since 2000
platelets: normal

Really these counts were all going up and down for nine years, they weren't going down the whole time which would suggest a falling pattern, but they were always a little low arround the same level for nine years. I don't know what they were before 2000 because I don't those records.

Doc said that his white cells are displastic though.

Is this good, not good, or meaningless?

Thanks,
George

[Birgitta-A]

Hi George,
Perhaps you have already seen the MDS Foundation Handbook with info about MDS:
http://www.mds-foundation.org/pdf/handbook-english.pdf

Then you know that MDS are a group of diverse bone marrow disorders. We are all different and it is very difficult to tell you anything about your partner's disease. As far as I understand his disease has hardly progressed at all since 2000 except that his white blood cells are dysplastic - I think he has a very good prognosis.

When I met many other MDS patients at a MDS Foundation PatientForum April 2009 in Stockholm I was very surprised when I heard from other patients that they got their dx more than 20 years ago and these patients had not had a SCT.
Kind regards
Birgitta-A
70 yo, dx MDS Interm-1 May 2006, transfusion dependent, Neupogen 2 injections/week for low white blood cells. Tried Ferriprox and Exjade for iron overload - now back on Desferal due to lower white blood cells. Asymptomatic.

[carolyn]

Hi Georges,

It looks like your partners blood results have been very steady and the results are not too bad at all. If the counts have been on the low side for the past ten years, why is it that the doctors havent suggested doing a bone marrow untill now? I wish you both all the best and hope that your partners illness will have a good prognosis.

Carolyn

[georges]

He went to a new urologist of the summer who "stumbled" upon the low blood count results. The new urologist told him that he should really find out why his blood counts are low so he sent him to a hemotologist/oncologist. From the research I've done, MDS is not like regular cancer in that there is no benefit to catching it early so in my very humble opinion we lived in blissful ignorance for 9 years and now I can't describe the gut wrenching hell it's been for the last two months or so. We get the bone marrow biopsy results on Nov. 6th. We have hope and prayer left. thank you so much for asking. I hope you are doing well and can maintain a positive view.

- George

[carolyn]

I am in a similar position to your partner, i have had slightly low blood counts for the last 10 years. I had a BMB in 99 which showed 'asplastic anaemia with possible myleodyplastic features' I have just had my second BMB and I am terrified that they'll tell me that I've merged into full blown MDS. I am just coming up to 25 years old and have a 1 year old daughter, every time I think about it I get upset although I am trying to remain positive because its the only thing I can try to do.

[Deanna16]

I have similar counts as your partner (and carolyn). The one that dips below the most is the WBC, but never below 1.0 (1000). I am 29 and my doctors treat me and the AA very causually now and I was only just diagnosed in September. They made it seem to me that if I am going to be an AA patient, these are the numbers I want to have...these are "good" numbers. I eat healthy, stay away from sick people (even my three kids when they are sick), and live life. Three people in my house have had the flu this year already and I have been A-ok. Stay positive!