[Susan Malmgren]

I was diagnosed August 2018 but had symptoms for at least six months. In addition to my local Hematologist/Oncologist, I see a doctor at the Stanford cancer center. To keep track of my numbers and events I created a spreadsheet which tracks white blood count, red blood count, hemoglobin, platelets, Absolute Neutrophils, transfusion and start and stop of treatments. My first bone marrow biopsy showed 16% excess blasts, second (first at Stanford) showed 10%. In the fall of 2018 I was treated with procrit injections and Azacidine infusions. January I switched to Decitabine infusions and Venclexta pills. I had my first transfusion Feb 22, 2019. In May I spent 15 days in the hospital with an unknown infection. By June I was in remission with less than 1% excess blasts. I spent the summer getting transfusions and blood tested twice a week. September 2019 I started on Promacta pills and by October I was feeling like myself again. No more transfusions. Since the end of December I take pill every other day. Now I get a blood test every two weeks and am leading a pretty normal life. I’m not cured but in remission and enjoying everyday. The spreadsheet has been a big help. I send it to my Stanford doctor along with blood test results. I know see her every 3 months and my local doctor every 3 months, so a doctor every 6 weeks.

[Susan Malmgren]

My error. I was on Venclexta which I believe was approved last summer. Close.

[Susan Malmgren]

I am 73 and also decided against a transplant. After 15 days in the hospital (which was the first time in my life) I knew that wasn’t the route for me. Any way I’m feeling better today than I have in two years.

[Susan Malmgren]

I left something out of my post and don’t see how I can edit it. So also starting in September I am continuing on a daily anti-viral and on Monday, Wednesday and Friday Bactrim (antibiotic) and Fluconazole (anti-fungal). My biggest problem is a bunch of no-see-um bug bites which are very unusual for this time of year.

[Susan Malmgren]

I was diagnosed August 2018 with MDS. Local hematologist did BMB and found blasts at 16%. A month later Stanford did BMB and found blasts at 10%. I started on Azacitidine and procrit injections. Second Stanford BMB in January had blasts at 8% and treatment was changed to venetoclax and decitibine. In May I spent 15 days in the hospital with infection that they never found the source of. June Stanford BMB showed blasts at less than 1%. I stopped both treatments. Although I was “in remission” my numbers were very low and I spent the summer getting transfusion of blood and platelets every week or every other week. Another Stanford BMB the end of August showed blasts still at less than 1%. In September I started on 50mg of Promacta daily. My numbers are now higher than they have been in over two years. Hgb is normal, neutrophils very close to normal and reds, whites and platelets moving up slowly. Since October I’m felt like myself again. Even went back to paddling on the dragon boat. I am 73. When I got the diagnosis it sounded like my MDS was very aggressive and I would be luck to survive a year.

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