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May 11, 2022 at 7:59 am in reply to: People who were diagnosed with low risk MDS six years ago or more #58129Bob CookParticipant
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, 10 months ago by Bob Cook.
Bob CookParticipantBe sure to tell your dentist before the work. Mine wasn’t familiar with MDS but was glad I let him know it made it difficult to fight even minor infections.
Bob CookParticipantContact the MDS foundation here on their website. I went to a conference and asked about traveling overseas and they can give you a list of Center for Excellence anywhere, and arrange to have you bio on file in case it’s needed so those centers know you.
Bob CookParticipantRoderick, I’m the same, asymptomatic. Diagnosed 3+ yrs ago at 55yo. Other than blood work and bone marrow biopsy, I wouldn’t know I had it. Although a few weeks ago I got sick for the first time since diagnosis. I think I’ve had 4 sick days in the last 30 years of work, so I’m usually very healthy. But caught a fever and couldn’t shake it, and then had to load me up with antibiotics. My typical numbers are WBC 1.3, Hemo 12, absolutes 354 and platelets 134. My Oncologist/Hematologist enrolled me in a study based on my age and lack of symptoms/sickness, so it’s unusual but not impossible. Bob
Bob CookParticipantNot me. I’m 58, diagnosed at 55. Mom has a low WBC but just above the line.
Bob CookParticipantSame here, told not related. But I’m 57 and active so joint pain not normal. For me it’s knees and elbows. I noticed caffeine and certain breads make it flare up much worse…. so I cut those out of my diet and made a huge difference.
Bob CookParticipantThanks Kathy. I carry Levaquin in a holster in case I break a fever 😉 Hasn’t happened in 2+ yrs. Just started the voriconazole a few months ago and experience facial numbness for an hour or so after each dose but getting used to it. But last week I started breaking out in a body rash that itches like mad…wasn’t sure if a side effect or not and seemed odd to start a few months into taking it. But seems to peak morning and night with the Vori…. I’ll keep trying to isolate it. Bob
Bob CookParticipantYes crackers and pasta are ok. Seems to be any bread with yeast. Flat bread/pita is ok etc.
Bob CookParticipantExcellent ! I share in your joy today !
Bob CookParticipantBrett – 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 16.5My 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.
Bob CookParticipantBrett – 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.
Bob CookParticipantI also have the joint pain. Especially the knees and shoulders. I blame the MDS but being 56 it could just be age. My Dr doesn’t link it to MDS either. I noticed it flared up worse with certain foods…I know sounds crazy. But within minutes of eating bread, chocolate or caffeine it flared up bad, so bad I had difficulty getting up and down from sitting, woke up in pain from my knees just rolling over in bed and bending my knees….. So I’ve eliminated those from my diet and it’s almost gone. I was going to see my family doctor about it to see if arthritis or something else but I seem to have it under control so I’ll wait. Hope you find something that works.
Bob CookParticipantIt seems counter intuitive, but I try extra hard to be physically active. It seems to help. I suspect maybe becasue it’s been helping me sleep better so the rest I get seems to be more energizing. Weekdays are too full for me but I usually try to nap a bit on the weekends. Same category, diagnosed 15 months ago, no treatment yet and stable but lousy numbers.
Bob CookParticipantIt frustrates me at how little information is out there. I’m an accountant so everything is black and white, so the answers you get with MDS questions are not satisfying. Your family and your Dad are in my prayers. If you are spiritual I hope His peace is with you and will get you all through this. If you are not, then I hope knowing many of us out here are experiencing the same trials and are with you will bring comfort. Keep us updated.
Bob CookParticipantBrett – 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.
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