55 year old woman just diagnosed with MDS

• Author
  Posts
• June 29, 2015 at 1:02 am #26985
  Jill

  Participant

  I was just diagnosed with MDS RCMD-RS after a bone marrow biopsy. One of my questions is how do I choose a transplant doctor to treat me, even if he or she decides I’m not ready for a transplant? I am having symptoms of the MDS – extreme fatigue, weight loss, and shortness of breath. My hematologist recommended a practice that isn’t one of the centers of excellence, but another doctor recommended a doctor that is at a the only center of excellencein my state. Should I get both opinions, or go out of state? Which facilities are considered cutting edge?

  July 8, 2015 at 12:41 am #27044
  naomi dotson

  Participant

  I to have mds. I was diagnosed three years ago. My blood has been up down the lowest was a 6.4 I lived on blood transfusions my advise is go to a cancer center. I go to cancer center of America in two months they have my blood up to a 11.3 and the oncologist here could not so it in three years. yes always get a second opinion don’t stop until you find someone to help.

  July 9, 2015 at 11:11 am #27092
  Jill Whitney

  Participant

  I was diagnosed with unclassified MDS (Intermediate-2) in 2008 at the age of 47. My first symptoms were fatigue and excessive bruising. It took six months of seeing my local hematologist before I was finally referred to Stanford, which is 4 hours from my home. It just so happened to be a Center of Excellence for MDS. Getting a second opinion is a great idea but in my case, I needed a transplant and it would not be covered by my husband’s insurance unless it was done at a Center of Excellence. You might check with your insurance company.

  July 10, 2015 at 3:49 pm #27105
  Anonymous

  Inactive

  Through our MDS Centers of Excellence program we have identified the top MDS experts worldwide. We do not give this designation easily and to maintain our integrity our criteria is quite extensive. I would recommend that you go to one of our Centers of Excellence in MDS for a second opinion. Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/. I hope this helps.

  July 14, 2015 at 8:32 pm #27120
  Jill

  Participant

  I’ve been waiting for more lab tests to come back. So far they’ve shown no molecular abnormalities (aside from the MDS anyway). Is this a good sign?

  July 15, 2015 at 9:46 am #27121
  Jill Whitney

  Participant

  Are you referring to the bone marrow biopsy results? The chromosome analysis usually takes a bit longer. Your IPSS score will determine what your risk factor is. This is a combination of the number of blasts (immature white blood cells – you want this number to be under 5%), number of chromosome aberrations and number of blood lines that are affected (red blood cells, white blood cells and platelets). Request a free copy of 100 Questions and Answers About Myelodysplastic Syndromes from the MDS Foundation. It will help answer a lot of your questions. I also agree with the site administrator about going to a Center of Excellence for MDS to be evaluated. I hope this helps.
  By the way, my name is Jill too and I will be 55 soon. What a coincidence!

  July 25, 2015 at 2:08 am #27134
  Jill

  Participant

  Thanks, everyone, for the advice! I’m now in the “watch and wait” phase. Both my first and second opinions recommended putting off the transplant a while.

  The oncologist who is going to follow me has suggested that we try B6 supplements for a couple of weeks to see if that helps. I eat a pretty healthy diet (vegetables, fruit, lean meat, fortified cereals). Have any of you tried the vitamin route?

• Author
  Posts