[Michael]

Cristy–

My advice is to get a 2nd opinion, using an MDS expert at a Center of Excellence. Think MD Anderson is near you. My local hematologist ordered a BMB for me in 6/16. Report from local hospital was RAEB1 6% blasts. One month later had BMB with MDS expert at Center of Excellence and results much different 1% blasts MDS-MD (low risk). Follow up BMB’s (3 in two years) indicate no progression and still 1% blasts. I have been on watch and wait since diagnosis and feel well. Platlets are at normal levels, Red cells low/borderline normal;HBG low hovers around 12, White cells always low range 1 to 2 at most blood work ups (monthly). ANC generally in severe range but thankfully only skin infections, since diagnosis. All three cells lines show dysplasia.

You found the right place for education in this website.
Best wishes

[Michael]

I was diagnosed in July 2016 At age 63 with MDS MD. I am on watch and wait since that time. Only once have I had a fever. I went to emergicare, as instructed by hematologist. Chest X-ray, blood work and flu testing all negative. Placed on IV given antibiotics with follow up on Tylenol and Ibuprofen. Was a big scare for me as it was 5 months after diagnosis. No fevers since that time but I do get skin infections, mostly from chafing on inner thighs from long walks. I am always either severely or moderately neutropenic at each monthly blood work up. I monitor my temp daily and am always on alert for possible fever.

[Michael]

Gerry–

2nd opinions are a must. Best to get to a Dr. at a Center of Excellence. This is a very individualized disease. I have low risk MDS and have been on watch and wait for 2 yrs. The initial diagnosis from local hematologist was RAEB-1 but 2nd opinion from Center of Excellence changed diagnosis to low risk. 3 BMB later still low risk with no increase in blast count but tri-lineage dysplasia and neutropenia.
Best wishes.

[Michael]

Donna

While I’m aware of the dark cloud it no longer consumes me. It’s taken 1.5 years to shake the fear. I’ve had 4 BMB since June 2016. The original indicated RAEB 1, 5% blasts. The 3 following indicate RCMD less than 2% blasts. These 3 were done at center of excellence. RBC is consistently low but above 4 with hemoglobin around 12. Platlets always above 200. WBC always low, lowest .99 and highest 3. ANC always low mostly very low think 250 with high of 880. I have ASXL1, IDH1, and SRSF2 mutations. I have been on watch and wait. My local hematologist takes monthly blood draws but my MDS expert in NYC calls the shots. Being a numbers guy I have spreadsheets and charts detailing all results. My MDS expert has convinced me that how I feel is more important than the numbers. My only symptoms are lingering skin infections, which are more nuisance than anything.

Like Alan suggests things can change on a dime. So far (2yrs) I’ve been stable. This helps me to live life caustiously to avoid infection but I’m committed to living life the best I can. I know I’m fortunate to not yet need treatment.

I hope you find the peace I’ve found.

[Michael]

This is a very personal decision. For me I told family and close friends. I am 66 and was diagnosed in June 2016 with MDS-MLD low risk. My sole cytopenia is neutropenia, with low ANC. I did not want others thinking I didn’t want to socialize with them but there would be instances when I had to avoid putting myself at risk of infection. With 8 grandkids I knew that there would be times of avoidance due to their illness. Likewise I play golf many times per week and wanted my playing partners to know that the lack of handshake was no disrespect. I resort to fist bumps.

I remain on watch and wait, no treatments. I’ve been infection free with exception of skin abscesses that are nuisances. Best wishes.

Also I’ve learned from my docs that this disease is very individual. The averages are just that and I don’t belabor them. It took time to reach my comfort level.

[Michael]

Donna–

I have mutations: ASXL1, IDH1 and SRFS2.

[Michael]

I am 65 yr old and diagnosed low risk 2 yrs ago. RCMD with low WBC and low ANC. I’ve been on watch and wait since diagnosis. I get monthly blood work and just had my 4th BMB with no sign of disease progression. When the Docs suggest treatment I’ll be receptive to their recommendations. I have 3 mutations. I living life cautiously with awareness that things can change.

[Michael]

I am low risk, diagnosed 2 yrs ago. I have low WBC, think 1.5 ish on avg. Also very low ANC mostly below 500. I wash hands frequently and carry sanitizer at all times. I have flown domestically and bought an ionizer that I wear when flying. So far so good. Infection free with exception of some nuisance skin infections.

Be cautious and best wishes.

[Michael]

Ulli
2nd opinion from a Center of Excellence Dr. is a must.
My 1st BMB resulted in diagnosis of RAEB1. I went to CofE for 2nd opinion and was classified low risk. That was 2 yrs ago and I remain symptom free without treatment. 2 subsequent BMB indicate no disease progression. See an expert before making decisions.
Best wishes.

[Michael]

Bravo 👏!

Great story to read.

[Michael]

My wbc is the sole cytopenia for me. It’s been as low as 1 and as high as 3 but mostly comes in around 1.5. ANC is nearly always below 500 but has at points been around 800. I get blood work monthly.
It will be 2yrs of watch and wait in June. No infections of significance but I do get skin infections/boils on my inner thighs. I walk about 5miles each day and assume that the friction is the cause of boils. I am careful to keep area clean and when the boils burst use antibacterial ointment. More of a nuisance than anything. I feel very fortunate. Awaiting the results of latest (4th) bmb.

[Michael]

Claire—-

This site is a great resource. Scroll down on home page to centers of excellence. Click and a statewide listing is provided. Centers in Miami and Tampa. I travel 150 miles to center of excellence and it is well worth it.

Best wishes.

[Michael]

I have been on watch and wait since diagnosis in June 2016. Classified low risk RCMD.

I am tested monthly and blood counts have been stable. RBC hovers around 4.1 and Hemoglobin is approx. 12. Platelets always in normal range. WBC averages 1.5 and ANC is always below 500 averaging 300. So far infections have been limited to skin infections that are more a nuisance than anything. I have 3 gene mutations IDH1, SRSF2 and ASXL1.

I would highly recommend going to a center of excellence for a second opinion regardless of classification. While I respect my local hematologist I find great comfort and strength knowing I have engaged an expert to be on my team. The three hour drive each way to the expert 2 or 3 times a year is worth the information I gain from the visit. I also get annual BMB at the center of excellence.

One thing I’ve learned is that this disease tracks differently in everyone it touches. I would not feel comfortable without an MDS expert on the team.

[Author]

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