People who were diagnosed with low risk MDS six years ago or more

[Joe Catalano]

I’d like to speak with someone and it was diagnosed With low risk MDS and is on watch and wait

[Michael]

Joe~

I was diagnosed in July 2016 with low risk MDS. I have been on watch and wait since then. I have an annual BMB each October. My last BMB was 10/20/21 and am happy to report Im still low risk and treatment free.

[Joe Catalano]

What is BMB?
I was diagnosed in July 2021 with low risk RBC LOW White blood cells normal range platelets normal range hemoglobin 10.2 all readings are stable so far. Was going to be treated with our nurse but I have not met the parameters yet so I’m on watch and wait.
Anything similar with you sounds like you’re doing very well

[Roderick McCune]

I have had abnormal WBC and Platelets for 10 years now. Only recently has my HGB fallen some to 11.9, but a recent draw showed 13.1. My oncologist thinks I will become symptomatic within 1.5-2 years. I hope this gives you encouragement Joe.

[Michael]

Joe~

BMB is bone marrow biopsy. I believe it’s the procedure that is used to diagnose MDS.

I am 69 years old. My lone cytopenia is neutropenia- low wbc, usually between 1.3 and 2.0. My rbc is typically boarderline low around 4.3 and my platelets are normal. All three bloodlines have abnormally shaped ans sized cells. My hemoglobin runs between 11 and 12. I have monthly blood draws locally and I travel to a Center of Excellence twice a year, with a BMB done there annually.

I have been ver fortunate thus far.

Best wishes.

[Joe Catalano]

When were you diagnosed?

[tam]

I have been on watch and wait for 8.0 years. My hemoglobin ranges from 12 to 13.5 and has been in that range since diagnosed. My wbc is at 2.9, rbc at 3.7, and platelets at 137. All counts have been stable over the eight year period. I bike, jump rope, walk, and long track speed skate. Haven’t noticed any dropoff in performance over the last 7-8 years. Staying active at 68 years keeps me sane and helps me monitor my health. Good luck and hope you remain asymptomatic for many years.
TAM

[Joe Catalano]

Thank you for the feedback

[Mary Roth]

Thanks for asking that question, Joe. I,too, have very low risk MDS and really appreciated all the replies that were posted!

[Alfonso Salvo]

Tam
8 years and no change is amazing !!! I hope you remain the same !!!
I was diagnosed 1 year ago normal wbc normal platelets red blood count between 2.8 to 3.,hemoglobin between 10.4 to 11.7
Waiting for the best
Very rare terrible disease!!
Alfonso

[Bob Cook]

Diagnosed 12/2017, still wait and watch. Neutropenic, WBC 1.3-1.7. 55 y.o. at diagnosis, 59 now.

• This reply was modified 1 year, 11 months ago by Bob Cook.

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