[Bob Cook]

Brett – Forgot to address bruising/bleeding. My regular Dr has had me on daily aspirin for many years, so I’ve been slow to clot since then, and any bump would cause a bruise that seemed large in proportion to the bumping. He’s cut me back to every other day for standard 81mg baby aspirin. But now I do find more bruising I can’t even explain/don’t recall bumping at all, and still slow to clot.

• This reply was modified 5 years, 5 months ago by Bob Cook.

[Bob Cook]

Brett Over the year, it hasn’t changed much WBC 1.5-1.9, platelet 115-150, Abs Nuets 420-450. Same here, ruled out Leukemia, leaving a dozen other blood cancers as most likely diagnosis. I’m still lacking some definitive “flags” to confirm MDS but they’re sure that’s what it is. No hard and fast diagnosis in this arena apparently and we don’t have a telethon yet…..

My regular Doc does annual blood-work to confirm I’m ok with my thyroid Rx and Staten Rx, etc. Called me in becasue WBC was 1.7. He actually didn’t believe the labs and retested , thought no way numbers could be that bad and I look and feel so good. So he didn’t diagnose anything, I felt (feel) great. Soon as retest confirmed he sent me to MD Anderson to Oncology Hematologist. They are also surprised my health hasn’t deteriorated, but I don’t get sick, don’t get infections, so I could have gone a long time without detection if not for routine blood work. Told me to avoid buffets and fast food (food poisoning is a major issue apparently) and avoid kids. Well I travel a lot, have 4 kids, a scout leader in 2 different troops and a leader in my daughters’ Indian Princess Group….so I’m living against doctors orders becasue I’m surrounded by kids and live on fast food….. Like I said, lately I feel great most of the day, but run out of steam about 900pm and it’s a sudden drop off. Find myself napping more on weekends when I can. Is it MDS or age ??? My Dad is 84 and has napped every day since I was born …..

Some ethnic groups are predisposed to MDS (African and Hispanic I believe he told me – something to do with antibodies inherited from ancestors exposed to malaria – iirc) and can explain it and my oncologist seemed like that made it less of an issue if it applied to me as it would be “normal”. But I told him I’ve done genealogy research for over 25 years, traced my relatives to England & Ireland in the 1500’s…I’m without a doubt the whitest patient he ever had. So if your husband has any significant african/hispanic heritage let your doctor know. They tested genetics as part of my bone marrow biopsy, I guess he didn’t trust my ancestry.com account.

For now I wait till my numbers show the other “flags” to confirm MDS as each blood cancer would have a slightly different treatment, and wait on numbers to get bad enough to require treatment…could be several years…kind of like having an anvil held over your head, but so be it. I can hear the anxiousness in your words… I spent several months in panic mode but the more I learn the more at peace I get. I just found this website Tuesday, so I’m happy to share and learn what others are experiencing too. Feel free to contact me anytime and please keep us updated on your side too.

[Bob Cook]

Brett – I’m similar, and also in the group “young” for this disease (56). First time I’ve been told I’m “too young” for something in a while. Routine blood-work caught the low WBC count a year ago. Initially they ran every blood test, every autoimmune test etc and a bone marrow biopsy. Never had any symptoms. Still don’t although I’m tired more easily now. But I’m very active with a large family with kids from 11-24y.o., so I’ve been tired for a long time. But seriously, the last few months by 900pm I’m done. but otherwise all is good. Doc runs blood-work every month, sees me quarterly and until something changes that’s the routine. Not sure what abnormality your husband’s bone marrow biopsy showed… other than the MDS related abnormalities…. my biopsy was done to determine if I was producing healthy WBCs and they were dying too soon or if I wasn’t producing them at all (which is the case…well they are not maturing to the point of being useful in the immune system. I’m new to all this so my lingo may not be exact , so anyone reading this please feel free to correct the terminology. Fortunately I’m otherwise healthy, the “never get sick” type, so that’s a plus. I’m interested in your husbands case as my doc tells me it’s a lot harder to provide me a prognosis because of my young age as there’s not that much case history so not as predictable as a diagnosis at 65+. So – I think I’m in a “similar situation” ?? Glad to share whatever I can with you. Bob

• This reply was modified 5 years, 5 months ago by Bob Cook.

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