Hello my name is Roxanne. In October of last year I had a BMB done after almost a year of severe anemia and not responding to iron vitamins.
I was diagnosed with CMML phase 1.
I am 54 years old.
I did have 2 iron infusions in Nov and Dec of last year.
I started cardio rehab last week to help build endurance to get better quality of life.
After the iron infusions, it took 2 to 3 months for my brain to come back to me. I had a lot of oxygen deprivation going on.
It feels good to be able to think clearly again.
However the shortness of breath is still here, I am not responding to iron vitamins.
When I meet with a NEW and competent team of hematologists they said I was not eligible for
the chemo radiation cocktail. She also ran a couple of tests that the previous Dr didn’t do, such as testing for the Philadelphia chromosome BCR-ABL, it was negative.
I asked if there where any trial studies and she said at this point with my phase of 1 that it is wait and treat.
I also understand that this part of the MDS MPN overlap is rare.
I have had a long history with the same primary Dr so I begin to investigate my past blood work and it shows that he had been watching my white blood cell counts going up in 2018, we thought it was my diverticulitis as my body responded to antibiotic’s and they went down to normal, 2019 same
2020 NOT.. It took 2 1/2 years to get to where I am today.
I have NO sense of a apatite feeling or of the need to eat any food. When and if I do eat it is small amounts and I am so full and than this insane exhaustion comes over me and I than sleep for 4 more hours.
I have lost weight, ( this is not the diet I would recommend to loose weight)
I have been searching long and hard for a support group. I’m glad I found this site.
I look forward to meeting and listening.