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MDS Myelodysplastic syndromes

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  #1  
Old Wed Sep 27, 2017, 07:58 PM
Bossywife Bossywife is offline
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Tired from low platelets

My husband's numbers are decent, his platelets are 50-90 usually and his WBC is a bit low. He is very active, plays hockey, lots of walking at work... But lately he has been very tired. Could it be the platelets? His blood is checked monthly, so we would know if it was worsening.
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Husband (60) dx RAEB1 Apr 2015 after long term bad CBCs (first discovered Apr 2008 after an unknown infection had him hospitalized), currently on watch & wait with monthly bloodwork. Myeloid Gene Panel testing done Aug 2017, awaiting results.
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  #2  
Old Wed Sep 27, 2017, 09:10 PM
Sally C Sally C is offline
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Hi Bossywife,
My husband's oncologist told us that it is actually the whites being low that made people feel bad. I don't think it's due to the platelets unless he has a bleed somewhere.
Best wishes,
Sally
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  #3  
Old Thu Sep 28, 2017, 01:56 AM
DanL DanL is offline
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Low platelets were the primary symptom of my MDS for the first 3+ years and I did not experience fatigue as a result of being in the 20k-30k range during this time.

Aside from normal causes of fatigue, with MDS, as Sally C mentioned, it can be tied to low WBC or RBC.
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. No longer experiencing nor treating CGVHD. Working on fixing long-term side effects of AVN in hips and cataracts in eyes. Life is good!
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Old Thu Sep 28, 2017, 05:18 PM
Bossywife Bossywife is offline
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My husband's WBC is below normal, but not critically low. That can cause exhaustion?
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Husband (60) dx RAEB1 Apr 2015 after long term bad CBCs (first discovered Apr 2008 after an unknown infection had him hospitalized), currently on watch & wait with monthly bloodwork. Myeloid Gene Panel testing done Aug 2017, awaiting results.
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Old Thu Sep 28, 2017, 09:03 PM
Callie Callie is offline
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My dad's reds/Hgb/HCT stayed pretty constant over the 3 1/2 years, so any fatigue wasn't associated with that. But, his platelets did fluctuate quite a bit and he did seem to feel much more tired when they dropped (the whites usually decreased at the same time, but the platelets were the most drastic)...
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Daughter of Bailie (diagnosed RAEB-2 11/13; transplant 08/14; relapse with Ph+ AML 04/15; remission until 04/17; DLI 06/17; passed away 07/11/17 at Day+1059)...the best dad a daughter could have...
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Old Fri Sep 29, 2017, 07:46 AM
DaveAvl DaveAvl is offline
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Callie, thanks for that. I just passed it along to my husband who replied, "Well then I'm not imagining it..."
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Dave age 69, husband of Alan age 67 who is a 25-year HIV survivor and was dx with MDS RAEB-1 5/24/17. Vidaza started 8/7/17.
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  #7  
Old Mon Oct 2, 2017, 08:21 AM
Bossywife Bossywife is offline
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Would it hurt to give my husband a small iron supplement? If his HGB is mildly low?
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Husband (60) dx RAEB1 Apr 2015 after long term bad CBCs (first discovered Apr 2008 after an unknown infection had him hospitalized), currently on watch & wait with monthly bloodwork. Myeloid Gene Panel testing done Aug 2017, awaiting results.
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  #8  
Old Mon Oct 2, 2017, 06:55 PM
maggiemag maggiemag is offline
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BW, you should check with your husband's physician first of all. We aren't doctors, or at least I'm not. That said, my oncologist, who tends to be overly thorough, checks my iron profile probably twice a year, bc I don't absorb oral iron. In your husband's work up, it is likely to have been checked. Additionally, iron stores are also checked, I believe, when a bone marrow biopsy is done. So his physician probably would have told you if he felt he would benefit from additional iron. You can have anemia from MDS and also have iron deficiency anemia. Also you said his HB is slightly low, but what is the number?
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Margaret, age 68, dx MDS 5 q- 5/09- now RCMD; also MGUS
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  #9  
Old Wed Oct 4, 2017, 09:11 AM
lisa3112 lisa3112 is offline
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Has he had many blood transfusions in the past months? My iron levels are high because the iron you recieve in blood transfusions has no way to leave the body effectively. So maybe check levels before giving supps.
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Now 30yr old. Diagnosed AML dec 2015 (Most likely MDS prior). Trisomy 6. Runx1 mutation also. Had induction and consolidation chemo. Marrow failure ++ so SCT on 21st of March with MUD. Married with a 1yr old!
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  #10  
Old Fri Oct 6, 2017, 04:32 PM
Ugo Ugo is offline
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tIRED FROM LOW PLATELETS

I started down this MDS road in 1902 when as a result of my annual pysical my CBC scores were below normal. Since that time my blood counts have remained in a band wavered on a regular basis. During those early years my main complaint was fatigue. When I told my hemo, the reply was to exercise. Honestly, I did not comply.. In turn I used B-12 lozenges which I really do not know if they really helped or that I thought that they did.

A little over three years ago I moved to Florida and in my development was a gym. I did begin to use the gym on a regullar basis and I do cardio for 30 minutes and resistance exercises for 15. I try to get there each day but it is usually 5 times a week. The exercise has helped with the fatigue.

This week my CBC was 2.20 WBC an 90 for platelets. At 80 years old I am thankful that my disease has not progressed beyond where it is. I can tell you though I am currently scheduled for an MRI for prostrate cancer. Who knows?
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