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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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.