[Michael]

Debbie~

I go to Center of Excellence every 6 months (3hr drive each way) and see my local hematologist monthly. I was diagnosed with MDS in June 2016 and remain on watch and wait. At today’s visit: WBC 1.17, RBC 4.35, HGB 12.3 Plts 209k and ANC .11. These are pretty standard results for me. WBC and ANC ☹️

My local hematologist has more concern about my wbc and anc than my Ctr. Of Excellence physician. Fortunately in 3 years I only have had one infection requiring medical intervention. In March of this year I had a MRSA skin infection that required 3 rounds of antibiotics before clearing. I also received Neupogen shots to assist in wound healing process related to the infection.

[Michael]

The norm for cellularity is 100 less your age. If one is 60 yrs old it would be “normal” to have 40% cellularity. I am 67 with 85% cellularity thus my bone marrow is hypercellular.

Hope this helps.

[Michael]

Debbie
Your question about cd markers is likely way above the pay grade of we patients using this site. Best to ask your hematologist.
At mds dx 3 yrs ago, I tried to learn as much as possible and overthink the whole ball of wax. At one time my wife suggested that if I kept asking questions that the MDS expert I am seeing at a Center of Excellence was going to toss me on the street.
I have been on watch and wait for three years. I get monthly blood work locally and travel to NYC (3 hrs each way) every six months to see the expert. It took awhile before I stopped paying attention to the numbers and stayed concerned about symptoms( as recommended by the expert). I am a retired accountant so ignoring numbers didn’t come easy.
Maybe your local hematologist can refer you to someone at a C of E and you can follow an approach similar to mine. I have one cytopenia (neutropenia) and my anc is nearly always below .5 (severe neutropenia). To date I’ve only suffered skin infections and while I am careful I don’t live in a bubble.
Best wishes.

[Michael]

Debbie

Are you having treatment? Generally blood counts will decrease in initial treatment months. Do you have any symptoms and how do you feel? With the low ANC, I’m sure you are diligent about hygiene and wash wash wash those hands. I don’t wear a mask except when I fly, visit a hospital or take other form of mass transportation. I have eight grandkids, my daughters refer to them as Petri dishes. All family and friends know they are taboo to me when they are ill. Soap and water, “Purell” and being diligent about avoiding sick people seems to be working for me. I’m not ready to shut out the world but am cautious in my approach to living as full a life as possible.

Hang in there.

[Michael]

Debbie

While I can’t directly answer your question i can give some perspective on low ANC. I was dx 3 yrs ago with MDS. I have multi line dysplaysa but only one cytopenia— neutropenia. I have monthly blood tests and I fall in the severely neutropenic category about 80% of the time. My average ANC is around 300 with a low point of 90. During this time I have had skin infections/abscesses but have only once sought medical intervention.

My MDS expert tells me not to worry about the monthly numbers as I generally am infection free without other symptoms. As a former accountant it is difficult for me to ignore the numbers but I’m trying. I have been on watch and wait since diagnosis. Early on I received occasional neupogen shots but have had one in about two yrs.

Best wishes

[Michael]

I was dx with MDS in June 2016. My sole cytopenia is neutropenia and my ANC nearly always falls within the severely neutropenic range. I continue on watch and wait.
I get multiple skin infections (boils/abscesses)generally on my inner thighs, especially during warm weather. I have dealt with them without medical intervention until my most recent bout. This boil was very painful and refused to burst from hot packing, so I sought medical care. The boil was lanced, drained and I was treated with antibiotic for staph infection. I am now undergoing wound care as even minor wounds take much longer to heal since my neutropenia. I am told that being neutropenic makes me susceptible to skin conditions/infections.

I would see your GP for the eczema if you can’t control it.

Best wishes.

[Michael]

Z~~~

I was diagnosed in June 2016 RCMD low risk. I have no issue with platelets, RBC is modestly low, hbg avg 12, wbc avg 1.5, and ANC nearly always below .5. I am on watch and wait, with monthly blood draw and annual bmb. Drs. generally don’t prescribe neupogen as prophalactic. I had a number of neupogen injections at outset as initial hematologist wanted to use Vidazza treatment. Neupogen was to bring wbc to level that made hematologist comfortable to use Vidazza. Second opinion at Center of Excellence with MDS expert led to no treatments but monthly monitoring.
Since June 2016 I’ve been essentially infection free, although I do get some minor skin infections from time to time.

This disease affects everyone differently. I wish you and your husband all the best.

[Michael]

Joseph~

You and your Dad are in my thoughts. Prayers for a successful outcome.
Best wishes.
Michael

[Michael]

Michael

This disease is very finicky. A second opinion from an expert at a Center of Excellence seems to be a wise choice.
I am 66 and was diagnosed in June 2016 with RAEB1 6% blasts from local hematologist/hospital. The recommendation was to start Vidazza treatment. Second opinion from MDS expert at Center of Excellence was very low risk RCMD 1% blasts, no treatment but monthly peripheral blood tests and annual bone marrow biopsies. I remain on watch and wait (took some time to wrap my head around it). My advice—put your faith in the experts.

[Michael]

Kathy
My first bmb was done as outpatient at local hospital with sedation, it was absolutely painless. This was not under direction of MDS expert nor at a Center of Excellence. Since, I have had 3 follow up bmb’s in doctor office (MDS expert at Center of Excellence). Those were not pain free but not so horrible either. You do feel pressure when the aspirate is drawn. I prefer the bmb’s be done by the expert and the short period of pain is not an issue for me. I have been able to make the 3 hour drive home from C of E no problem.

Best wishes.

[Michael]

Marie

I am 66 and was dx with MDS in June 2016. My sole cytopenia is neutropenia. WBC is generally between 1.5 to 2.5. ANC is almost always in severe neutropenic range .5 or less. I do get some skin infections but none so serious to require treatment. I had had two colds in the past 2 yrs and 8 months. They both knocked me for a loop and took 2 to 3 weeks of recovery. I am on watch and wait and have annual bmb’s which so far indicate no progression of mds. Monthly peripheral blood work has been stable with low wbc and neuts consistently. I wash my hands often, stay away from sick folks and try my best to avoid infection. So far so good. My mutations are IDH1, SRFS2 and ASXL1.

Best wishes

[Michael]

Jack

I suggest you see an mds expert at one of the many centers of excellence nearby. My initial diagnoses was 6% blast from local hospital and local hematologist. I went to center of excellence and saw an mds expert. Results were 1% blasts I’ve been on watch and wait for 2.5 years with no progression of disease. This disease tracks differently for each individual. Need a doctor with specialty in mds.

Good luck.

[Michael]

Donna-

I believe that you need only one of the items you list in addition to Cytopenia to be classified with MDS. Seems you don’t hit any of the 3 items therefore CCUS. Maybe the new bone marrow will reveal more.

I am classed mds with very low anc, I have low blasts(1%), no cytogenetic abnormalities, but do have dysplasia (trilineage) >10%. I was diagnosed in June 2016 and have been on watch and wait since. I have 3 mutations AXSL1, SFRS2 and IDH1.

My first BMB indicated 6% blasts but second opinion bmb at a Center of Excellence with a mds expert indicated 1% blasts. 3 subsequent bmb’s at Center of Excellence show no progression but genetic tests indicate increase in the vat of all 3 mutations.

I get blood draws every 6 weeks and results are stable but anc is nearly always less than 500. Most recent anc 164. I feel well and have not suffered from major infection, but do get skin infections that I am dutiful with.

I’ve learned to have unquestioned trust in my mds expert. The first result and read placed me in intermediate 1 headed for Vidal a but second opinion halted that course and I’ve avoided treatment for 2.5 years.

Good luck with the bmb.

[Michael]

The mods response above is what I do. I am 2.5 hrs from the closest Ctr. of Excellence. I travel there every 6 mos and in the interim see my local hematologist.

[Michael]

I was diagnosed in June 2016. Initial diagnosis was medium risk with blasts at 6%. Follow up biopsy at Center of Excellence in July 2017 downgraded to low risk 1% blasts. Annual follow up biopsies at C of E show no progression of disease.

Monthly blood draws are stable low wbc (1.5ish), rbc (4.2),hgb (12), platelets (175). ANC is always 500 or lower so I’m generally always severely neutropenic.

In 2+ years I’ve been fortunate to only have one fever. Made it to emergicare with IV, chest X-ray, flu test etc. one dose of antibiotics. Final result, I had a cold.

I might just be darn lucky, but I wash my hands all the time, stay away from known sick folks, travel with an ionizer around my neck when flying, wipe down surfaces with Clorox wipes many times per week, carry Purel with me all the time. I do get skin infections which I keep clean, covered as best I can, wash with antibacterial soap. They are a nuisance for sure but so far so good.

At outset local hematologist used neupogen to raise my wbc. Also she often recommends a shot before I fly. Neupogen is not used as a prophylactic for exactly the reason you indicate. Otherwise I think I’d be taking it often considering I’m severely neutropenic. I’ve only had one dose of antibiotics in 2+ yrs. I thank my lucky stars most every day. One troubling thing is when the grandkids (8 of them) cough they have to stay away.

Best wishes.

[Author]

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