MDS is a bone marrow failure disorder
MDS is a blood cancer
Learn More >

Welcome to the MDS Patient Message Board Post New Thread

Welcome to the MDS Patient Message Board. We hope that you will find this to be a very valuable resource in your journey. We have recently revised the format of our forum to be much more user friendly and pleasing on the eyes. Let us know if you have any problems, or if you have additional suggestions on how we might further improve our site.

Needing transfusions every two days, no diagnosis

Home forums Patient Message Board Needing transfusions every two days, no diagnosis

Viewing 2 posts - 1 through 2 (of 2 total)
  • Author
    Posts
  • #37139
    Ashley Knierim
    Participant

    Hi everyone –

    This forum has been insanely helpful as a lurker while my mom goes through such a trying time. Back in November, my mom was taken to the hospital with low blood counts – WBC, Platelets and RBC. She was on Methotrexate at that time for RA and the doctors did a BMB. She had no chromosomal issues and the pathologist say 5% blasts and they diagnosed Methotrexate toxicity. We went to a cancer clinic (Ohio State) for a second opinion and that pathologist saw only 2% blasts and diagnosed again a MXT toxity and we were told her blood counts were improving after being off of it.

    Last week she was taken to the hospital with 6.5 hemoglobin and has needed 3 transfusions in a week (she does have a small ulcer / bleed that could be complicating the blood issues). She has basically no reticulocytes (she was low back in Nov but back to normal by Dec after MXT was taken off). When she came in 5 days ago her WBC was fine and her platelets were only slightly low (145). Now, all three counts are down (WBC 2.6, Platelets 90) and we’re still waiting for the bone marrow biopsy to come back. They haven’t found any blasts in her blood, but I did see this result: Ig Kappa Free Light Chain 3.09 mg/dL.

    Right now we’re in a waiting period until the new BMB comes back and the oncologist won’t speculate with me. Does anyone have experience with Methotrexate-induced MDS? Does the fact that she needs so many transfusions this week signal only bad news? Her blood counts were all improving and we couldn’t get a diagnosis of anything so it’s such a disappointment for this to happen so quickly and I question whether I should have gone to a 3rd opinion and now it’s too late.

    #37147
    mdsfound
    Moderator

    Dear Ashley, I would recommend that your mother go to one of our MDS Centers of Excellence for a second opinion. Some patients get third, fourth, and even fifth opinions all from our designated centers of excellence. Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/. We also have a wonderful information program called the Building Blocks of Hope which we can send you via postal mail. If this is something that you would be interested in, please forward your mailing address to patientliaison@mds-foundation.org. In the meantime, you can also view this video https://www.mds-foundation.org/bboh/. I hope this information helps.

Viewing 2 posts - 1 through 2 (of 2 total)

Register for an account, or login to post to our message boards. Click here.

  • You must be logged in to reply to this topic.

Login

Login

Search Forums

Review answers to commonly asked questions or get answers to your questions from an MDS expert