[Michael]

Mark~

You are newly diagnosed and understandably emotional. We all go through this phase. Education and seeing an expert in the disease are paramount to getting a better understanding of your particular situation. It was explained to me that MDS while not curable is treatable. If MDS progresses to acute myeloid leukemia then a bone marrow transplant may be an option for cure. But you can live with MDS with appropriate treatment.

You are correct I am lucky, 4 yrs. no treatment. Lousy white blood counts but stable. Without being anemic, I am still able to do many physical things that I could do previously. But we all have a cross to bear when we develop MDS. While I can do many things I need to refrain from going to many functions of my 8 grandkids. No concerts, plays or anything that involves being in a crowd. I cant take them to a waterpark for fear of infection.

MDS changes your life, no doubt, but it doesn’t have to control it. Its not easy. But you have to learn how to live with it. As I said previously, it took me well over a year to come to grips with my situation. Watch and wait, while it sounds rosy, is itself unnerving as we are programmed to think that if I’m not getting treatment then I’m not doing all I can to improve. Like you, I was told there are no lifestyle changes that can make the disease get better. That is tough to hear – no doubt. Also tough to hear that the experts can’t explain how we developed MDS.

Regarding BMB, my first was done locally with mild sedation ~ no issues other than no driving the day of. My four subsequent BMBs ( at COE) were without sedation and progressively got less painful. The first of these was painful (7/16). The last (11/19) I had to ask if the Dr. started yet. I was able to drive home after each of them. No pain subsequent to completion of the procedure.

Hang in there and Best Wishes

[Michael]

Mark~

You found this site and it contains many useful tools for your guidance. It is difficult for any individual here to answer your questions because we are lay people and this disease affects each of us differently.

I was diagnosed in June 2016 at age 64. While I was not as active as you, I did ride bike, take spin class, run on treadmill, play golf( walking 4x/ week), etc.
As I have a normal low blast count, I am on watch and wait approach. I have monthly blood draws and annual bone marrow biopsies. So far my counts remain stable.

Unlike most my sole cytopenia is neutropenia, low white blood count and low absolute neutrophil count. As a result, I must be concerned with infection. Consequently, I’ve been practicing the social distancing routine for the last four yrs., on a limited basis. I no longer go to the gym, avoid sick people, wash my hands, use hand sanitizer etc. I am able to maintain my exercise as my red blood count is low normal and my hemoglobin level is near 12. I’ve invested in a stationary bike and treadmill for my basement and use them during winter or inclement weather. I still play and walk the golf course 4X/week in nice weather.

My routine care is with a local hematologist/ oncologist and I go to a Center of Excellence every 6 months and have my annual BMB done there. My COE dr.is globally renowned.

I’m told that my risk of developing acute myeloid leukemia is very low. Thus my likelihood of dying from MDs is very low. But remember the disease is different for everyone.

My advice, take the time to educate yourself and get to a Center of Excellence. I travel 160 miles each way to a Center of Excellence and it’s worth every second of time.

This disease is complex and there is no one size fits all approach. It took me well over a year to come to grips with my situation.

Best wishes

[Michael]

Please seek a second opinion preferably for a center of excellence. I was diagnosed in July 2016 with low risk MDs. My sole cytopenia is neutropenia. My typical wbc is 1.5 with severe neutropenia. I have been on watch and wait the entire time. In July 2019 , I was diagnosed withpolymyalgia. I have been on prednisone since. My while blood count has increased to 3.0 and neutropenia has become mild from severe. I was told prednisone would cause increase in wbc. Last week I had my annual bmb at Ctr of Excellence. I don’t yet have results but there were no blasts in my peripheral blood. There was no talk of progression to AML.
Best wishes.

[Michael]

I would recommend having your mother seen at a MDS Center of Excellence. I think you have a choice of Rochester or NYC. I live in Albany and travel to NYC to. Center of Excellence.

[Michael]

Kathy~

You are correct, this disease is confounding and very much individualized. Therefore each person’s choice as to the track they proceed is neither right nor wrong. Treatment may prolong our time until a better alternative to transplant is discovered.
I was diagnosed 3.5 yrs ago and am still on watch and wait. My sole cytopenia is neutropenia although all cell lines are dysplastic. Monthly cbc’s are stable and hopefully my bmb in November will indicate no real progression. I have been living with severe neutropenia the entire time, with only one infection requiring medical intervention. Fortunately my quality of life has been very good.
Currently my thoughts are similar to yours. I’ll pursue treatment when necessary but it’s doubtful that I would choose transplant when treatment fails.

Best wishes.

[Michael]

Martha

I am in your neutropenia low white count boat. I had the shingles live virus vaccine prior to being diagnosed. Since then I believe there is a new shingles vaccine that is not a live virus and would be safe for folks in our category. I believe the newest vaccine requires two injections 6 months apart. Your MD should be up on this.

Best wishes

[Michael]

Cammie ~

I don’t consider myself much of a resource for your dad. While I have the two mutations the course of the disease for your dad is much different than mine. The only significant comments made to me regarding the mutations is that there are drugs other than chemo associated with the IDH mutation. Since I am still not receiving treatment I have no other frame of reference regarding the the interactions/ effects of those drugs.

Best wishes to you and your dad.

[Michael]

Bingo, you found me. I have both mutations plus SRSF2. I am low grade, low risk classification. I was diagnosed in June 2016 and have been on watch and wait since then. Sole cytopenia is neutropenia with very low ANC, always below 500. Hgb is generally around 11.5 to 12 and platelets above 200. I have had skin infections and so far so good. I’m scheduled for Next BMB in November. I do get monthly monitoring for blood work. I am 67 yr old Caucasian male.

Best wishes to you and your dad.

[Michael]

Agree strongly with Rita. Use this site to find the Center of Excellence closest to you. I travel 2.5 hrs each way to a Center in NYC and have an excellent MDS expert overseeing my care in addition to my local hematologist.

Best Wishes

[Michael]

Donna

A halmark of Polymyalgia is joint and muscle pain which is most severe in the morning. It is an autoimmune disease and the standard treatment is prednisone. I think lyrica is used for fibromyalgia which is not an autoimmune disease but related to central nervous system.

Quite frankly I’m not happy to take steroids but the pain relief is remarkable. It restored quality of life. My reasearch tells me that the prednisone will increase my wbc and neuts which have been always very low since mds diagnosis. Yes there is concern about osteoporosis but I have been taking vit d daily for years. Also I get a good exposure to sunlight as I play golf 4 times per week ( something I couldn’t do in the 3 weeks prior to PMR diagnosis).

I’ll have long discussion at my next hemo appt in 10 days.

[Michael]

Yes to C of E but. I have yet discussed Polymyalgia with my expert. I am seeing local hematologist in a week and after that discussion will reach out to my expert.

The prednisone (steroid treatment) has totally relieved by pain issues but how it’s use impacts my MDS is the next natural response.

Be well

[Michael]

Carole-

I go to Columbia Med Ctr in Upper Manhattan. I travel there from Albany area. On this site you can see that there are 10 Centers in NYS. 8 of those are in Metro NYC. You likely can find one closer to you.

Best Wishes

PS~ I have been on watch and wait for three years. My local hematologist wanted to start Vidazza immediately but the Ctr of Ex stopped that approach.

[Michael]

Original Medicare is my primary insurer and I am seen at a Ctr of E in New York. The physicians accept Medicare determined service rates. My supplemental or secondary insurer (United healthcare) covers the balance of Medicare determined rate less Medicare payment less my co payment. Your Mom my be in a Medicare Advantage plan as opposed to original Medicare.

[Michael]

Malissa~

Thanks for the well wishes and kind words. I am a retired accountant, and it was very difficult for me to accept my MDS expert saying “Don’t worry about the numbers” when I inquire about my wbc levels. Fortunately my rbc and hgb are only modestly low (4.3 and 12.2) so I am not yet plagued by the fatigue that many suffer. I am still able to mow the lawn, do my house chores and more importantly walk the golf course 4 times each week and engage with my 8 grandkids/Petri dishes, when they are not sick.

My best to you and your husband.

[Michael]

Malissa~

I have been on watch and wait for 3 yrs. My wbc is generally less than 2.0 and anc below 500 at each monthly blood test. Accordingly I have had a number of skin infections/ abscesses. I hot pack the abscesses get them to drain and keep them clean and covered until they heal and wash the area with antibacterial soap.
In March of this yr. I did seek medical care for a stubborn abscess when I developed a fever. The abscess was incised and drained and the infection was determined to be mrsa. I was prescribed antibiotics for a month before the infection cleared.
I have followed a cautious approach since diagnosis 3 yrs ago. Wash my hands frequently, carry Purcell, avoid sick people and cover ALL skin breaks until healed.

We are all different in how the disease affects our bodies. My local hematologist has more concern about my low wbc than my Ctr of Excellence physician.

Hope this helps.

[Author]

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