Non-serious versions of MDS

[Laura Milcsik]

I have a relatively non-serious version of MDS. Bone marrow test showed that I don’t have the kind that is likely to turn into leukemia or cancer and it is only seeming to affect my blood counts so far and that is all my hematologist thinks this will do to me. My question is what I benefit from going to a center for excellence because they seem to focus on cancer. My iron counts are abnormal for a non mds patient but abnormal for a “normal” person. My hematologist doesn’t seem to be taking it seriously but I am exhausted most of the time. Any suggestions? Would I benefit from the centers for excellence or do they mainly focus on people who have much more serious versions of MDS and I do?

[Jill]

Hi Laura, I was told that the type of mutation MDS that I had (SF3B1) was less aggressive. My hematologist continued to check my blood counts, but I went for two years without having another bone marrow biopsy. After two years, my next biopsy showed that I have Acute Myloid Leukemia, so I have started treatment for a transplant. I wish I had asked for more biopsies, although the treatment might have been the same. We don’t have a Center of Excellence in our area and I didn’t want to travel to one, but maybe I should have.

[lynne]

I was “watch and wait” for a long time as well,and now I have to get a blood transfusion every three weeks and have iron overload on my heart,thus congestive heart failure. I would recommend keeping on top of it,and if u can go to one of the centers of excellence, even if for a second opinion. I live 2 hours from the Sanford Center of Excellence,and my husband and I just went to a conference there at their cancer center for mds patients and their caregivers. My doctor is in Modesto,as we live in Oakdale ca.

[Mark Simpson]

I am also on a wait and watch. Do to other issues going on in my life. Severe ulcerative colitis. My latest white blood cell count is at .08. See hematologist in about 2 weeks again. You should get a second opinion, if you feel the way you do.

[rar]

I was diagnosed with MDS so mild it would never need treatment. Four months after that I had a transplant for MDS RAEB 2 very high risk. Get a second opinion.

[Claire Weiss]

I was just diagnosed last week and was told I would get no treatment until red blood count went under 10 by Medicare. What else can I do? Should I get a second opinion? Am very concerned.

[Michael]

I have been on watch and wait since diagnosis in June 2016. Classified low risk RCMD.

I am tested monthly and blood counts have been stable. RBC hovers around 4.1 and Hemoglobin is approx. 12. Platelets always in normal range. WBC averages 1.5 and ANC is always below 500 averaging 300. So far infections have been limited to skin infections that are more a nuisance than anything. I have 3 gene mutations IDH1, SRSF2 and ASXL1.

I would highly recommend going to a center of excellence for a second opinion regardless of classification. While I respect my local hematologist I find great comfort and strength knowing I have engaged an expert to be on my team. The three hour drive each way to the expert 2 or 3 times a year is worth the information I gain from the visit. I also get annual BMB at the center of excellence.

One thing I’ve learned is that this disease tracks differently in everyone it touches. I would not feel comfortable without an MDS expert on the team.

[Claire Weiss]

Where do you find the second opinion doctor? I live in south fl

[Michael]

Claire—-

This site is a great resource. Scroll down on home page to centers of excellence. Click and a statewide listing is provided. Centers in Miami and Tampa. I travel 150 miles to center of excellence and it is well worth it.

Best wishes.

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