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MDS myelodysplastic syndromes

Has anyone been diagnosed with MDS? I was just diagnosed in June. I would like to start a discussion and possibly talk to you about what I’m up against.

  • Post #1
  • Sun Aug 11, 2019
I'm heller48, and I'm a survivor of Myelodysplastic Syndrome

Hi Bruce, I have been diagnosed with mds and mpn. It doesn’t seem like there is a lot of information on our cancer because it isn’t common. I have been able to function relatively well, as long as I accept that my anemia limits my physical abilities. I was not doing well recently and I had a blood infusion, transfusion, and it helped me a lot. my hgb went from 8.2 to 9.6. I have recently started on procrit, and have not seen much benefit yet. my symptoms were shortness of breath and fatigue. One good thing about our cancer is it can’t metastasize . let me know your specific questions or concerns. I am 71, male, caucasian, retired. Only cure is stem cell but been told by rutgers and the jeff that I am too old to be a canidate.

  • Post #2
  • Mon Aug 12, 2019

Hi, I’m 67, male, Caucasian, retired. I live in Michigan and got my diagnosis from University of Michigan Hospital. I started feeling tired about this time last year. I got a routine physical last November when they noticed my blood cell levels were low. Started getting monthly CBC’s and didn’t get diagnosed until early June. How long have you been diagnosed with MDS? You say mpn too. What exactly is that? My red, white and Hgb are all extremely lower than normal. Platelets are still in lower normal levels. The lowest my Hgb has been is 8.8. It’s now 9.2. Tomorrow I will get my 4th EPO/procrit injection and have not noticed any change in my energy at this point. I too experience fatigue and shortness of breath. I haven’t had any transfusions yet. My hematologist/oncologist suggested the injections first. You mentioned that they won’t do stem cell, bone marrow transplant due to your age. Do you know how they determine if you qualify for transplant? Yes this is the only cure for MDS unfortunately.
I wish you well.

  • Post #3
  • Mon Aug 12, 2019
Hi, I'm Ann N B.

I am a 90 yr. old female. My primary care first noticed my low RBC in Feb. 2018 and I was diagnosed with del5qMDS in Dec. 2018. I began treatment with Revlimid in April 2019 but it was ineffective and I had to have a blood transfusion in June. I am now getting Procrit shots and my RBC is now 11.7. My lowest was 8.1 in June so I am pleased that Procrit seems to be effective for me.

  • Post #4
  • Mon Aug 12, 2019

Yes the procrit really seems to be working! My hematologists said to me that if Hgb goes over 11 they would need to back off due that blood is getting too thick and blood could start to clot. Did your doctor mention this to you?

  • Post #5
  • Mon Aug 12, 2019

For those who made comments regarding MDS have you been able to keep most of your friends once they understand what you have? MDS is so rare that nobody understands what you’re going through. Once you explain it they still don’t understand it seems. If you say it is a form of blood cancer then they get it. They ask if I’m on chemo and then when I say no they look at me weird. I explain the only cure is stem cell/ bone marrow transplant as a last resort if I’m healthy enough. It’s complicated.

  • Post #6
  • Mon Aug 12, 2019
Hi, I'm Ann N B.

I was surprised when my Hematologist said I should have another Procrit shot. The nurse thought HGB 11 was the max. but apparently it is O.K. up to 12. I don’t have to have another blood test for 3 weeks. So far I feel much better. At my age, there will be ongoing monitoring and treatment when needed. There is no cure.

  • Post #7
  • Tue Aug 13, 2019

For you I’m glad they made an exception and that you’re feeling better. Had my 4th procrit today. Hgb is 9.5. Hopefully it will rise more quickly soon.

  • Post #8
  • Tue Aug 13, 2019
Hi, I'm Sharon I P.

I, too, am on Procrit. I received 2 shots @ 20K dosage 2 weeks apart. I did not see any results until about a week after the 2nd shot. My symptoms of fatigue, increased heart rate and shortness of breath with minimal activity disappeared almost overnight. My RBC went from 8.0 to 11.0 in about 1 1/2 months. I was to get another shot this week, but didn’t because of the increased RBC count. Too much Procrit can cause the blood to get thick thus increasing the risk of stroke/heart attack. I go back for labs in 2 weeks. I am an almost 68 year old female. I was diagnosed with MDS in April 2019. I had low white cells for about 12 years and low platelets for about 5 years. The red cells started dropping in late 2018. I had no symptoms until June 2019. The diagnosis (MDS with multilineage dysplasia) was discovered through newly developed stem cell testing and was confirmed with a bone marrow biopsy (my 3rd in the last 8 years). While it’s not a diagnosis I wanted, it is a relief to know what the problem is after such a long time.

  • Post #9
  • Thu Aug 15, 2019

Wow I’m sorry that it took the doctor so long to get a diagnosis for you. I thought that it took them long for my MDS diagnosis after 8 months. Im glad that the procrit injections are helping you feel better. No it’s not the diagnosis you wanted but no you can get treatment to at least help you feel better. Praying for all MDS sufferers out there!

  • Post #10
  • Thu Aug 15, 2019

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