LOW BLOOD COUNT

[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.

[Brett Lavoy]

Hi Bob this Brett sounds like we have close to the same problem

This my e-mail and i could give you my phone # brlavoy@comcast.net
talking will cover things more faster

[Bob Cook]

Brett – Good to talk to you. I spoke too soon though, Monday’s blood work came back and my Absolutes tanked from 450 to 250… so having another marrow biopsy this week. He wanted to do an annual one anyway which would have been January…. but he doesn’t want to wait to see what’s going on. I’ll let you know.

[Brett Lavoy]

Hi Bob, Brett has me type since not his favorite thing to do. I just read your message hate to hear that and please let us know what is going on and what is causing it. We are waiting it out till after first of the year.
Brett was diagnose with MDS but at the low stages and with all that were said to do for it a little confused.
The Doctor in Niles had a type of medication chemo drug to start, when we followed back up with the first doctor
we saw he said to do stem cell transplant right away only solution to cure it while he is still young and before
it get’s to bad. Please and anybody out their have a reply for this.

[Bob Cook]

Brett – Any change in your situation ? Doing ok ? No change here… Dr did another Bone Marrow Biopsy this year and my numbers remain consistent at lousy. But still in great health otherwise. My Dr had me joint a case study with several people nationally with MDS that have no symptoms outside of bad blood work numbers…..trying to track our progress and see what makes us so odd LOL. Hope you and your wife are doing well. Bob.

[Rose eden Guanzon]

Brett until my husband came down with a fever that wont go away, we had no idea something was wrong. That night he got sick,he spent the day doing some heavy carpentry around the house, trimmed the branches of our tree and then we watched a movie on netflix while he drank a couple of beers and listened to his stereo. At around 12 am he started to feel feverish and had chills. I thought it was just flu. 3 days later, the fever was still there. He had a CBC and his WBC was 1.0. His hemoglobin was 8.5. Platelet was 80.our family doctor suspected mds but said it needed a bone marrow biopsy to confirm. We did not believe him of course. My husband built our house almost singlehandedly, did chores all day long, never been sick in his life. It took us 4 months to get that biopsy and that was only because his counts just wouldnt improve. I had never heard of mds till he got sick. We are now in the hospital undergoing a allo transplant. Best of luck and my prayers to you but certainly get the best medical help at the soonest time.

[Brett Lavoy]

Bob: feeling good also I go back to Dr. in 5 weeks. What are your numbers ?
My NEUTROPHIL ABSOLUTE are low and PLATELET COUNT. they have offed no treatments yet
Going to northwestern in Chicago to see transplant Dr

NEUTROPHIL PERCENT MD 13.0 % 34.0 – 73.5 % L
NEUTROPHIL ABSOLUTE # MD 0.6 /uL 1.4 – 6.5 /uL L
LYMPH PERCENT MD 63.0 % 20.5 – 51.1 % H
LYMPHOCYTE ABSOLUTE # MD 2.6 /uL 1.2 – 3.4 /uL
MONOCYTE PERCENT MD 18.0 % 4.3 – 12.9 % H
MONOCYTE ABSOLUTE # MD 0.7 /uL 0.2 – 0.9 /uL
BANDS 2 % 0 – 5 %
ATYPICAL LYMPH 4.00 0.00 – 4.00
WHITE BLOOD CELL COUNT 3.9 10*3/uL 4.0 – 10.0 10*3/uL L
RED BLOOD CELL COUNT 3.21 10*6/uL 3.90 – 5.70 10*6/uL L
HEMOGLOBIN 12.1 g/dL 13.7 – 17.5 g/dL L
HEMATOCRIT 35.3 % 40.0 – 51.0 % L
MEAN CORPUSCULAR VOLUME 110.0 fL 79.0 – 95.0 fL H
MEAN CORPUSCULAR HGB 37.7 pg 27.0 – 34.0 pg H
MEAN CORPUSCULAR HGB CONCENTRATION 34.3 % 32.0 – 36.0 %
PLATELET COUNT 108 10*3/uL 150 – 400 10*3/uL L
MEAN PLATELET VOLUME 10.8 fL 8.6 – 12.4 fL
RED CELL DISTRIBUTION WIDTH 13.8 % 11.3 – 14.8 %
DIFFERENTIAL TYPE MAN DIFF
General Information
Collected
04/02/2019 12:02 PM

[Brett Lavoy]

Thanks Rose for your transplant info more people are reading it than you can ever think Thanks

[Bob Cook]

Brett – My numbers that are abnormal are:

ABSOLUTE NEUTROPHIL 296
WBC 1.5
HEMOGLOBIN 13.0
ABSOLUTE MONOCYTES 198
ABSOLUTE EOSINPHILS 0
RED CELL DISTRIBUTION WIDTH 16.5

My Dr is putting me on an antifungal as a precaution. Just waiting to find one insurance will cover at a reasonable rate, they are apparently a high end Rx. Good luck with the next Dr visit and let me know what happens. MDS Foundation had an all day seminar here in Jax a few weekends ago. My wife and I attended with maybe 80 folks (40 “patients” and their caregivers/spouse/etc). It was very good and informative. If you see them schedule one near you it’s worth the trip.

[Susan Malmgren]

I was diagnosed August 2018 but had symptoms for at least six months. In addition to my local Hematologist/Oncologist, I see a doctor at the Stanford cancer center. To keep track of my numbers and events I created a spreadsheet which tracks white blood count, red blood count, hemoglobin, platelets, Absolute Neutrophils, transfusion and start and stop of treatments. My first bone marrow biopsy showed 16% excess blasts, second (first at Stanford) showed 10%. In the fall of 2018 I was treated with procrit injections and Azacidine infusions. January I switched to Decitabine infusions and Venclexta pills. I had my first transfusion Feb 22, 2019. In May I spent 15 days in the hospital with an unknown infection. By June I was in remission with less than 1% excess blasts. I spent the summer getting transfusions and blood tested twice a week. September 2019 I started on Promacta pills and by October I was feeling like myself again. No more transfusions. Since the end of December I take pill every other day. Now I get a blood test every two weeks and am leading a pretty normal life. I’m not cured but in remission and enjoying everyday. The spreadsheet has been a big help. I send it to my Stanford doctor along with blood test results. I know see her every 3 months and my local doctor every 3 months, so a doctor every 6 weeks.

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