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MDS Myelodysplastic syndromes

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  #1  
Old Sat Apr 28, 2018, 04:02 PM
Bossywife Bossywife is offline
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RAEB-1 with new Anemia

So my husband has had some episodes of anemia. Even just walking will tire him out completely. His bloodwork confirmed.

Is it okay to give him iron supplements or is it a good idea to check with the Doctor first?

It's obviously a sign of progression, does this mean they will do SCT? He has a brother who is a match.
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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, showed nothing worrisome.
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  #2  
Old Sun Apr 29, 2018, 12:47 AM
maggiemag maggiemag is offline
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Hello BW. Wasn't your husband already anemic? Hence the diagnosis of RAEB?? How low is he now? Has he had any treatment like growth factors such as Procrit or Aranesp? I would imagine your doctor already knows if he is iron deficient, so I would check with them first. I can't speak for your physician, but if I have a change in bloodwork, like ANC diving or Hb diving down, my oncologist would do another BMB before any decisions were made. She says "you can't treat what you don't know." How long ago was his last bone marrow? Certainly, would think no one would mention a transplant without knowing what's actually going on in his marrow right now. But I am not a physician.

Good luck and please keep us posted.

Mags
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Margaret, age 68, dx MDS 5 q- 5/09- now RCMD; also MGUS
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  #3  
Old Mon Apr 30, 2018, 02:21 AM
Bossywife Bossywife is offline
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His HgB was low way back when he was diagnosed, but since diagnosis, his iron has been fine. He only has low platelets and worsening low WBC. This anemia is new. He hasn't felt this crappy since 2008 when he first showed signs and his blood #s were all low. (he was diagnosed in 2015 after having moderately low numbers for 7 years).

He's never complained of exhaustion like this. The only other new thing is he was started on Insulin. I'm not sure if this would affect his Iron levels... or if the insulin makes him tired also.

He told me he didn't want to play hockey this summer. That is very out of character.
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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, showed nothing worrisome.
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  #4  
Old Mon Apr 30, 2018, 06:37 AM
Naive Naive is offline
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So he has had iron levels done and they are low? Or has he got anaemia with normal iron levels? If itís iron deficiency he may have a problem not related to the MDS. Maybe with the low platelets he is having a slow blood loss from his bowel. I think his hemo needs to do some further testing.

Good luck.
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  #5  
Old Mon Apr 30, 2018, 08:53 AM
Bossywife Bossywife is offline
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I think that's what testing he just had done, and we're getting the results on Wednesday. Good point though! I hadn't thought of that. Thank you!
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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, showed nothing worrisome.
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  #6  
Old Tue May 1, 2018, 12:12 AM
DanL DanL is offline
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I hope that your husband starts feeling better.

I would talk to the doctor first before starting iron. I am not sure whether taking iron supplements work the same way as transfusions, but my initial concern would be that if transfusions become necessary, the additional iron could add to or accelerate iron overload, which brings a different set of problems.
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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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  #7  
Old Thu May 3, 2018, 02:07 PM
Bossywife Bossywife is offline
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I will definitely check with the doctor. He just developed a boil on his butt. I read that this can be dangerous to someone with low ANC, but his is 1.46, is that low enough to worry?
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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, showed nothing worrisome.
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  #8  
Old Thu May 3, 2018, 10:35 PM
Naive Naive is offline
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I think it depends on how well his neutrophils function as well as the numbers. If they are dysplastic they may not work as well. In theory they donít look too bad but it doesnít always work that way.
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  #9  
Old Fri May 4, 2018, 01:06 AM
Cheryl C Cheryl C is offline
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Hi Bossywife - In my own experience, iron supplements don't actually raise one's haemoglobin, but can still make one feel better and sleep better.

Re neutrophils in case you're not aware, 1.5 to 8 is normal so your husband's aren't very low, but as Naive said, it depends on the quality of the cells.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 5-weekly. BMB Feb 2014 - no blast transformation. 2018 still stable.
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  #10  
Old Mon May 7, 2018, 07:23 AM
Sue&Dave Sue&Dave is offline
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Hi Bossywife - Your husband's experience sounds similar to Dave's. In late 2016 his counts started a downward trend, but nothing too alarming until he just hit a wall. Up until December he had been plugging along, recovering from some significant surgeries, but feeling relatively good. By month's end he was doing a lot more sleeping and had no energy, could barely walk to the mailbox. After the first of the year headaches and fevers were added to his list of miseries. Long story short - after a week long stay in the hospital to rule out infections he was started on Vidaza. The doc said that even though his blasts were at 5%, all of his symptoms were a sign that the disease was progressing. The first two months he was on treatment he couldn't even walk in the door to the doc office to get his shots, we were transporting him via wheelchair. We fully expected to have to go to transplant in 2017. But after such a great response to treatment and without a MUD we have opted to continue on with the Vidaza. With your husband having a related donor, his course of treatment will likely differ. Best to the both of you....
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  #11  
Old Mon May 7, 2018, 04:55 PM
Bossywife Bossywife is offline
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Sue&Dave... which of the bloodwork results had the worst effect on his energy? my husband's platelets have always been around 50-90 with no issues, but when his WBC went low, he got tired... but obviously the anemia caused the biggest issue with exhaustion, but I feel like his WBC also caused tiredness for him.

Did your husband need infusions or transfusions?
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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, showed nothing worrisome.
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  #12  
Old Wed May 9, 2018, 07:02 AM
Sue&Dave Sue&Dave is offline
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Hi Bossywife- I'm not sure there was one particular count that we can point to that contributed to Dave's exhaustion. He too historically had low platelets and his whites have always been his nemesis (they are always the first to fall and rises the least). Even when he had a couple of red transfusions it never put a lot of 'pep in his step'. Because he had fevers, chills, headaches and bone numbing exhaustion the docs attributed it all to disease progression. As a matter of fact while he was in the hospital being evaluated for an infection I don't think they ever gave him a transfusion. He did have 2 red cell transfusions after he started on the Vidaza because those treatments really tanked his already low numbers. Since then he has thankfully not needed any transfusions and is currently on round 17 of Vidaza. Please keep us posted on how your husband is doing.
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  #13  
Old Sun May 13, 2018, 02:00 PM
Bossywife Bossywife is offline
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My husband is still very tired. He works 40 hours a week (at the Cancer Clinic of all places), and he does a LOT of walking. That seems to tank his energy the most. He plays hockey and seems to be okay playing once or twice a week, but the day to day work seems to get him the most.

I guess if I think about it, hockey is just over an hour and he only plays maybe a third of that. He's very close to retirement and I wish he would just retire and start relaxing. ugh.

I'll keep you posted. Thanks for your comments!
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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, showed nothing worrisome.
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