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MDS Myelodysplastic syndromes |
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#1
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Weird Question .... but maybe not.... !!
Hey, MDSers ....
Do any of you notice feeling blue/ and or depressed just before a transfusion ?? I also have a LOT less patience with people two to three days before.....kinda like P.M.S. but not ... Is it just me ? Or do any of you experience the same thing ??? Thanks for any answers .... Ann |
#2
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Ann,
People who are low on blood not only have specific observable medical symptoms (exhaustion, little red spots on their arms, etc.) but they can also feel just generally "lousy". It doesn't really need a more precise medical term but you might call it malaise. I think it's no surprise that people who feel lousy might be grumpy, impatient, easily annoyed, sadder than usual, and so on. It's good for patients and their caregivers to be aware that this can happen, not only so they don't blame themselves but because it provides another clue that your counts might be low. It's not a foolproof way to guess when you need a transfusion, but it's always good to pay attention to the signals that your body sends you. |
#3
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feeling low
Dear Ann,
It's not unusual to feel really tired before needing a transfusion, and depression goes along with that, because you can't do all the things you usually do, and that makes you depressed if anything does. Listen to your body, don't force yourself to do things if you don't feel like it. With low blood counts, it seemed that even my mind didn't work properly. So relax, take it easy and don't worry. Perhaps you like to read, or sew, or something sedentary, so you can do that if you want to. |
#4
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Transfusion blues....
On the flip side, I have noticed that several times, after a transfusion, I feel lousy, not the big energy boost I was hoping for!
I think our bodies have to go through a lot of work to process two pints of foreign fluid in our blood! I agree with Rosemary--if you are used to having an active life, just the fact that you are forced to slow down is frustrating!
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Cheri Age 54; dx Oct 2009 AML, induction chemo only;dx MDS July 2010,- PRBC transfusion dependent; Results BMB 8/4/11--- 6-8% blasts; Danazol 100 mg 3xday; quit Exjade/ GI distress; platelets holding 40's; Fluctuation in blasts in blood--Neupogen 3-4xweek; off Revlimid again! Procrit weekly |
#5
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...but maybe not
I, too, become extremely depressed right before a PRBC transfusion, and I do believe that it is more physiological than psychological because I notice significant improvement after the PRBCs. Perhaps decreased oxygen to the brain has something to do with it? That said, I also feel physically wiped out (as Cheri mentioned too) after both PRBC and Plt transfusions. I need to take a nap as soon as I get home, and it still takes many hours to feel "normal" again. I also think that each unit affects me physically in slightly different ways. Has anyone else noticed a subtle difference in how your body reacts to each unit?
M.
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Marmab, F65, SAA/hypo MDS dx 7/2011. Tried ATG/CsA, IvIG, Rituxan, prednisone, Promacta -- none of these helped. Transfusion dependent until MUD BMT 7/17/14. Prep. regimen of Campath, Fludarabine & Cytoxan. Doing great. 100% engraftment. No GVHD. |
#6
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transfusion blues
I, as well, need a nap after a transfusion. 2 units. I have only had 2 units twice and 1 unit platletts. But , I did chemo right after this transfusion, levels were 7.2 and 3rd day of Vidaza. Usually takes a good 24hrs. before I really feel any difference. Not the boost me me either.
God Bless Anneg |
#7
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Hi all!
When my hgb hits 8.5 territory, I generally start to feel a little ragged. More blood pounding in the ears, less energy, more need for a nap, less productivity, less ability to do the chores I need to do around the house. Just today I was supposed to break out the chainsaw and clear up a lot of brush around the outbuildings. But the hangover from an endoscopy yesterday, combined with the low Hgb, meant I felt thoroughly trashed. I basically sat in front of my computer getting practically nothing done until about 5:00 pm, when I finally woke up enough to edit a news report on a county commissioners meeting. It's four hours later, and I'm basically trashed. Though I should be able to get up enough energy to get that story up on the web. And, to Ann's original question, none of that makes one feel particularly positive about oneself. Blood tomorrow, but, like a lot of you, I won't expect to feel much in the way of positive effects from that, energy-wise, until Sunday or Monday. And I do find that the recovery time varies form one transfusion to the next, though I'm not sure just why that is. It's a bit of a roller-coaster, but better than the alternative! We'll keep cheating that gator as long as we can, right Cheri? Take care! Greg
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Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com |
#8
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Hugs, Greg. That inability to get anything done right before a transfusion gets Bruce pretty down. It's a roller coaster for sure, on so many levels.
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Catherine, wife of Bruce age 75; diagnosed 6/10/11 with macrocytic anemia, neutropenia and mild thrombocytopenia; BMB suggesting emerging MDS. Copper deficient. Currently receiving procrit and neuopogen injections weekly, B12 dermal cream and injections, Transfusions ~ 5 weeks. |
#9
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Feeling positive effects of transfusions...
My usual transfusion dates are Wednesdays and it's not until the weekend before I really feel better. That's my experience and so far I've had 180 units transfused since 2008.
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Ric: Low-risk MDS (blasts <4%); 4 cycles Revlimid no positive response; PRBC transfusion dependent; so far, 392'units' over 8 3/4 years; BMB #4 (15/04/01) shows evolution to AML (blasts 20-30%) 47,XY,del(5) (q22q35),+21[24][cp24]/46,XY(1). |
#10
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Leo
It's an up and down condition,some time I feel rotten and don't need any blood, other times I feel great and need 3 units. I have swings in emotions up and down. My wife says "I hope you don't get any crabby blood this time". If I do feel lousy and need blood, I always feel better right away. I do nap a lot, but most of the people at my age nap a lot.Up thru 2/7/12 I have had 284 units of blood, I have always felt fine afterwards.
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82 yr. old male. Diagnosed in 2003. Started Blood infusion 1/5/2004, average of 2 units every 2 weeks. Inject Procrit weekly 40,000 ML. I have had 344 units of PRC. E Mail leojean@comcast.net |
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