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asymptomatic mds

Home forums Patient Message Board asymptomatic mds

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Viewing 15 posts - 1 through 15 (of 16 total)
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  • #53261
    Roderick McCune
    Participant

    Eight years ago I had slightly out of range wbc,rbc and platelets with no diagnosis as doctor didn’t seem to note this was a problem. I currently am seeing an oncologist as I am still slightly low on all three values as before mentioned. the only change since 8 years ago is my wbc being lower. My oncologist says it may be MDS, but I am asymptomatic and feel fine. Could I have MDS and be asymptomatic for 8 years with little change in values(wbc2.9, rbc 13.1, platelets 147)? Thanks

    #53262
    Michael
    Participant

    I was diagnosed with MDS in June 2016. Referral to hematologist was result of low wbc. After a battery of blood work I was sent for bone marrow biopsy to confirm MDS. I’ve not had noticeable symptoms prior to or after diagnosis. I’ve had no treatment and have been on watch and wait since diagnosis. Blood counts typically run; wbc-1.6, rbc 4.2, hemoglobin 11.5 and platelets 200+. So I think the answer to your question is yes, but without bone marrow biopsy or molecular genetic testing you won’t know if you have MDS. My MDS expert physician described to me the concept of punctuated equilibrium ~ meaning your counts can stay stable for a period and then some change occurs disrupting the counts which then stay stable until the next event for change. You can stay at levels for years, as I have.

    #53263
    Roderick McCune
    Participant

    I can’t thank you enough Michael for your upfront response and I am glad you are staying symptom free. I appreciate this information and will continue to learn. I need to have the bone marrow biopsy but my doctor thinks it is too early to do this so I will have to discuss it with him. I am 69 years old and just referred in August to oncologist. Thanks again Michael

    #53269
    Michael
    Participant

    You are welcome Rod. I am 68 and was diagnosed at 63.
    Best wishes.

    PS~ I recommend going to a Center of Excellence, for bmb and diagnosis.

    • This reply was modified 3 weeks, 4 days ago by Michael.
    #53272
    Roderick McCune
    Participant

    I have Cleveland clinic nearby. would that qualify?

    #53274
    tam
    Participant

    Roderick
    I am 67 now and was diagnosed with MDS in 2013 based on a bone marrow biopsy. When I learned of my disease I decided to go back to my annual physicals and found a complete blood count done in November 1991. My counts were low then. My doctor at the time brought the low counts to my attention and attributed them to possibly my training for marathons. He did not order follow-up monitoring or a biopsy at that time. My next complete blood count wasn’t until 1998 with a different family doctor. My counts were only slightly higher then but still borderline. From 1998 onward I’ve had a complete blood count nearly every year and have remained on the low end. It wasn’t until 2013 that my doctor decided to refer me to a hematologist who ordered a biopsy. My counts have changed very little over the last 29 years. In 1991 my counts were as follows: platelets 134, RBC 3.9, WBC 4.0, and hemoglobin 12.8. I am basically at these same levels now. I am in wait and see mode and continue to lead a very active lifestyle. I’ve been able to bike 4,300 miles across America, bike around the Netherlands, exercise 3-4 hours per day, and continue my passion of long track ice speed skating. I know I’m one of the lucky ones with this disease and feel for those who have not been able to lead a near normal life. It’s possible I’ve had MDS-unclassified for 30 years. During that time period I have not noticed unusual bleeding, higher than normal infections, or tiredness. My goal each day is to stay in good health through strict diet and exercise, and try to keep my immune system strong.
    TAM

    #53275
    Michael
    Participant

    Rod

    Cleveland Clinics has many locations in different states. You can find the Centers ofExcellence on this website. Click on visitors and patients above. A box opens with a menu which includes Centers ofExcellence. Hope this helps.

    #53276
    Roderick McCune
    Participant

    Tam
    Thanks for sharing your diagnosis and it’s details. this is very encouraging to me. I know my oncologist said this could go on for decades so you are an example. I run and bike daily, but not anything like you. Your routine is amazing. Do you think your strict diet helps to keep your bloodwork in low range steady? I have not changed my diet yet. Rod

    #53278
    tam
    Participant

    Rod,
    If you’re interested in seeing my diet type the word “salmon” in the search bar above on the right under Search Forums. Scroll down four entries and you’ll see my entry titled “Diet for MDS.” It is kind of over the top but you may pick up an idea or two.
    TAM

    • This reply was modified 3 weeks, 1 day ago by .
    • This reply was modified 3 weeks, 1 day ago by .
    #53281
    Roderick McCune
    Participant

    Thanks Tam

    #53285
    stacey
    Participant

    Very happy for the 3 of you who are symptom free and are doing so well! That’s terrific news!
    Take care,
    -Stacey

    #53456
    Bob Cook
    Participant

    Roderick, I’m the same, asymptomatic. Diagnosed 3+ yrs ago at 55yo. Other than blood work and bone marrow biopsy, I wouldn’t know I had it. Although a few weeks ago I got sick for the first time since diagnosis. I think I’ve had 4 sick days in the last 30 years of work, so I’m usually very healthy. But caught a fever and couldn’t shake it, and then had to load me up with antibiotics. My typical numbers are WBC 1.3, Hemo 12, absolutes 354 and platelets 134. My Oncologist/Hematologist enrolled me in a study based on my age and lack of symptoms/sickness, so it’s unusual but not impossible. Bob

    #53457
    Nancy Bartholomew
    Participant

    I am happy to see that there are those that can remain asymptomatic MDS. I probably was for years and didn’t even know it! My bloodwork has been erratic for years, in fact I was constantly being questioned about possibly drinking too much since my red blood cells were always very enlarged. I was also always running borderline anemic. Not until I changed doctors did I get the real answer to my blood issues. Fortunately I was referred to a hematologist in 2016, after a couple of abnormal checkups. I was given a BMB at that time, and was shocked when the report came back with the diagnosis of MDS-del5q. I was put on a wait and see mode with blood work every 3 months. Fortunately I went 2 years before I fell off the cliff! I knew the disease was progressing because I always felt extremely exhausted, and just not normal. I’ll never forget the phone call from the hematologist telling me that my numbers had reached a point that I needed to be put on Revlimid.(Revlimid is the protocol for my type of MDS) Also, I had a camping trip planned to the mountains and he said I had to cancel because I did not have enough red blood cells to oxygenate my body properly at higher altitudes. What a shock it was! That was 2 years ago this September, and I have been on Revlimid ever since. The drug has worked very well for me, other than dealing with sometimes severe gastrointestinal issues and sleep disturbance. Although the past 3 blood tests have shown a downward trend, I am praying that it is due to the stress that I have been under in my personal life and not that the therapy is losing its affect.

    #53462
    Roderick McCune
    Participant

    Thanks Bob for your story. I appreciate your sharing. It is good to know other stories are being written out there. Rod

    #53463
    Roderick McCune
    Participant

    Thanks Nancy for sharing your story. I pray your numbers stabilize and you continue a long life. I know my faith in Jesus keeps me focused on living each day knowing my life is in His hands.

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