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Treatment for low risk MDS -VS – No treatment

Home Demo forums Patient Message Board Treatment for low risk MDS -VS – No treatment

Viewing 6 posts - 1 through 6 (of 6 total)
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  • #57289
    Sheila Fossberg
    Participant

    My husband was diagnosed with low-risk MDS in January 2022. He has had a second opinion which suggested he hold off treatment as long as he can. His Oncologist would like to start him on injections three times a week to build up his white cell count. His white count at his last blood draw in January was 1.1. His red cells and his platelets are low, but not as low as the white cells. His Hemoglobin at last count was 11. He is feeling well so far. I’m asking if anyone else has had the injections (do not know the name of the medication) and if so did the injections build up the white cell count, and if they suffered any side effects. Thank you!

    #57292
    Joe Catalano
    Participant

    I was diagnosed with low risk of the US in June my red blood cell count is low my hemoglobin is 10. White and platelets were normal. If my hemoglobin jobs pulled all night and the doctor will treat me with a aranesp at to increase red blood cell production. I doctor from Memorial Sloane Kettering is not treating me until I need treatment we are on watch and wait.

    #57293
    Michael
    Participant

    Sheila-

    I think the injection you are referencing is neupogen. It does elevate the wbc and offsets neutropenia. I was diagnosed in June 2016 with intermediate MDs, 6% blast level. My local oncologist/hematologist recommended Vidazza treatment but would not start Vidazza until my wbc was at least 3.0. At the time my wbc was similar to your husbands. Therefore I received neupogen injections to raise my wbc. For me the effect of the injections lasted about 36 hrs. And like your husband received multiple injections per week.

    I received a second opinion and second bmb in July 2016 at a Center of Excellence. The BMB results were dramatically different showing a blast level of 1%. The plan for treatment with Vidazza was stopped. I return to the C of E annually with similar BMB results 1% blasts. I remain on watch and wait. I occasionally develop skin infections and have received neupogen sporadically when I do. The last neupogen injection was in Jan. 2020.

    I get monthly blood work and my wbc is generally 1.2 to 2.0. I range from moderate to severe neutropenia. My RBC is modestly low and hemoglobin is typically 11.5 to 13. Platelets are always normal.

    As my sole cytopenia is neutropenia, I asked why not just treat with neupogen regularly. I was told that there is concern that regular neupogen treatment may promote acute myeloid leukemia. Thus it is used judiciously.

    I hope this information helps. It is important to understand that each case of MDs is different thus it is difficult to rely on another’s experiences.

    Best wishes.

    #57294
    Sheila Fossberg
    Participant

    Thank you for your response.
    It is amazing how MDS has so many different variances as far as which cells are affected the most. One type is treated with medication for symptoms, while another is treated with blood transfusions. And at some point chemo for all of them. It’s hard to know what to do at times. Just trust!
    I wish you the best in your watch and wait and pray that all goes well for many years.

    #57296
    Sheila Fossberg
    Participant

    Michael,
    Your response was very informative. I do realize that each case is quite different for each individual. Viewing the different topics in this forum I realized that right away! It is helpful to read how others are being treated and the different possibilities of treatment for MDS. Also to see some of the treatments others have that either help with the symptoms or fail to help. You are very knowledgeable about your disorder and I strive to learn everything I can to be able to support my husband and his decisions on his MDS. Thank you Michael for your response. I appreciated it.

    #57309
    Joe Catalano
    Participant

    Thank you for your explanation to Sheila was very thorough and gave some good insights for a lot of us

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