[Michael]

Matt~

I am 70 and was diagnosed with low grade MDS 6 years ago. It was a shock and difficult to understand. Like your grandma I was told the 5 year expectancy. I’ve been treatment free and on watch and wait since diagnosis. I have monthly blood draws and an annual bone marrow biopsy and my disease has not progressed much. I’ve had to make some adjustments lifestyle wise but otherwise I’m doing well.

While this disease is different for everyone, my point is don’t despair. I have 8 grandkids and they all understand grandpa has a disease and I enjoy doing things with each of them. Next month I’m taking four grandsons for a week at the ocean.

Best wishes.

[Michael]

Diagnosed in 2016 at age 64. Low risk and have been on watch and wait since diagnosis.

Typical monthly blood results:
WBC- 1.8
RBC- 4.3
Plat- 280,000
Neut- 25%
Lymp – 55%
Hemoglobin- 12.7

I feel blessed not having treatment. I live a “normal” life but very conscious of potential infection. I’ve been doing the hand washing staying away from sick people long before Covid.

My hematologist calls it “punctuated equilibrium” meaning you can stay at stable levels until some event happens and then things change. After the change you begin a new “punctuated equilibrium”.

Best wishes

[Michael]

I was diagnosed in 2016 at age 64. Initial bmb indicated intermediate level 6% blasts. Local hematologist wanted to start Vidazza. My sole cytopenia was and still is neutropenia. To get me ready for Vidazza I received neupogen injections. Neupogen increase my wbc for about 36 hours and is not considered an appropriate prophylaxis treatment. In meantime I requested second opinion at a C o E. In interim, I received 3 doses of Vidazza and stopped pending C o E results. C o E bmb indicated 1% blasts and Vidazza treatment was halted. My CoE physician performs annual BMB and I stay consistent at 1% blasts and remain on watch and wait. In those 6 yrs I been cautious about infection and have had only a one cold. I do get skin infections from time to time. I thankful for avoiding Vidazza so far. I feel well. My advice is to follow the treatment plan of the experts at Roswell.

Best wishes.

[Michael]

I was diagnosed in June 2016 with MDS, trilineage dysplasia with sole cytopenia being low wbc. I’ve been on watch and wait since diagnosis. My wbc ranges from 1 to 1.8 pretty consistently at monthly blood draws. Neutrophils approximate 25% of white cells. ANC consistently lower than 500. Exceptions are if I have a skin or sinus infection. When my wbc is on higher end (2.5 – 3.5) my hematologist will give me neupogen/zarxio as she suspects some kind of infection.

At outset I received neupogen fairly regularly during the first six months post diagnosis. I believe that was to gauge my reaction and tolerance. Each injection would raise wbc to normal levels for approximately 36 hours. I asked why not just give me injections every 3 days? Response was fear of increasing blast counts, as cited by Andrea.

I had a recent skin infection and received two zarxio injections. Those were the only injections I have received since January 2020.

After neupogen/zarxio injections I experience mild bone pain typically around my knees or lower leg. No nosebleeds.

I hope this helps.
Best wishes.

[Michael]

Generally blasts in the peripheral blood is not a good sign. But it was explained to me by my oncologist that an occasional but not consistent appearance should not cause concern. Having said that I note that I am low risk on watch and wait for 6 yrs. I am 69 yrs. old. I also have occasional myleocytes. My sole cytopenia is neutropenia, rbc is consistently low normal, hemoglobin around 12.5 and platelets in the normal range.

I get monthly blood draws and they have been consistent with only deviance in wbc which rises to low 3’s when I have a skin infection. It is normally in the 1.5 range. I call myself Mr. Boring. I get annual BMB’s with 1% blasts in my bone marrow.

[Michael]

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.

[Michael]

I am low risk and diagnosed in June 2016. I have monthly blood work at local hematologist which thankfully remains stable. I have an annual BMB at a Ctr. Of Excellence and my blast count remains normal. My hgb is typically between 11 and 12.5, my wbc is always low 1.6ish.

My annual BMB is when I see the Dr. who will guide my treatment when it becomes necessary. I would not miss that trip for anything.

Best Wishes.

[Michael]

I have had 3 crowns on cracked teeth over the last five yrs. No issues, no premedication.
I was diagnosed with MDs six yrs ago and have moderate to severe neutropenia. Because of this I was also concerned about possible infection.

Best wishes.

[Michael]

I am 69 and diagnosed with MDS in June 2016. I’ve been on watch and wait since outset. My lone cytopenia is neutropenia. I run from severe to moderate neutropenia in monthly blood work. I’m vaxxed and boosted but still mask up in gatherings outside of my family or group of close personal friends. Before the omicron uptick I was living my life very close to my post MDS normal. The only real difference is masking up. As my expert MDS doctor recommended “trust the vaccine”.

I’ve not tested positive for Covid. I am currently in Florida for two months escaping the upstate NY winter.

Best wishes.

[Michael]

Malissa~

My situation is similar to your husbands. Diagnosed low risk in July 2016, no treatment as yet with annual BMB performed at NY Columbia. I have borderline low RBC and hemoglobin at 11.5-12 range. My ANC is a tad lower than your husbands as I range from .3 to 1.1.

I on occasion get pain in my lower extremities from my hips to shins. These pains come and go. This summer I tore my meniscus and upon Xray my orthopedic dr. referred me for PT. I did a two month rehab with PT and have continued my PT protocols at home and they have provided needed relief not only to my knee but also my hips, quads, hamstrings and calves. Maybe your husband might benefit from a consistent program of stretching.

Best wishes

[Michael]

Joe~

BMB is bone marrow biopsy. I believe it’s the procedure that is used to diagnose MDS.

I am 69 years old. My lone cytopenia is neutropenia- low wbc, usually between 1.3 and 2.0. My rbc is typically boarderline low around 4.3 and my platelets are normal. All three bloodlines have abnormally shaped ans sized cells. My hemoglobin runs between 11 and 12. I have monthly blood draws locally and I travel to a Center of Excellence twice a year, with a BMB done there annually.

I have been ver fortunate thus far.

Best wishes.

[Michael]

Joe~

I was diagnosed in July 2016 with low risk MDS. I have been on watch and wait since then. I have an annual BMB each October. My last BMB was 10/20/21 and am happy to report Im still low risk and treatment free.

[Michael]

Rod~

No special diet for me. My wife makes sensible meals but I do stray when on my own! When I inquired about lifestyle changes my “MDS guru” said not necessary. Of course hand washing and staying clear of known sick folks have been my social distancing practices long before cover reared its ugly head.

Best wishes.

[Michael]

At my 8/30 hematologist appointment, the doctor strongly encouraged me to get the booster ASAP. She indicated that although not currently getting treatment, my blood malignancy qualified as immune compromised. I’m schedule to get the booster on 9/8.

[Michael]

Lee~

In June of 2016 I was originally diagnosed with intermediate MDS 6% blasts. The BMB was done at a local hospital and it seemed the pathologist report was based on a computer model. Local hematologist recommended treatment with Vidaza but seemed uncertain relative to BMB report and suggested a 2nd opinion from a Center of Excellence.

I was promptly scheduled for the 2nd BMB but in the interim received 3 doses of Vidaza. That treatment was truncated as my white blood count was too low.

The 2nd opinion from a world renowned hematologist was low risk MDS 1% blasts. All treatment was stopped and I remain on watch and wait. I am monitored bimonthly locally and travel to the Center of Excellence twice per year. Each fall I receive a BMB and to date all have been consistent with 1% or less of blasts( thankfully).

I have decided that all of my decisions regarding MDS will be guided by the recommendations from my hematologist at the Center of Excellence.

I have never gotten a good explanation regarding the difference between the original BMB and the 5 subsequent BMBs at the Center of Excellence.

Maybe your MDS specialist should have a repeat BMB instead of rehashing the original.

Best wishes.

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