My Unsuccessful Fight Against MDS

I was having frequent infections, and my pulmonologist saw that my blood counts were going down, suggesting me to see a hematologist. I consulted him and after my bone marrow biopsy was diagnosed as low risk MDS with U2AF1 mutation.
Since the blood counts were not very low, he stated that we will wait and watch the blood counts, and also allowed me to travel to London for six months.

Feeling weak and fatigued

After about 5 months I was feeling very weak and fatigued. I was unable to do my daily routine work.

I came back to India and got my blood examined. The hemoglobin was 7•25 and WBC were 3000 and Platelets 63,000/-. My doctor advised me to transfuse 2 units of blood. The doctor also suggested to take Cresp injections, once in three weeks. Since the platelets were also decreasing very fast, I was asked to take Romy injections, once in 3 weeks.

The first injection was to stimulate bone marrow to produce healthy red blood cells, and the second one to increase the production of platelets.

Difficult side effects

The side effects of the above treatment were pretty bad, as I would have chills, severe muscle pain, and headache. I was advised to take Paracetamol, which gave me some relief. I also took Lorazepam at night for sleep and I slept well, but I got up tired in the morning.

I was on frequent blood and platelets transfusions.

On consulting two senior haemo/ oncologists, they suggested to take a combined treatment of Azacitidine and Venetoclax. I completed one cycle of chemotherapy for 7 days.

The doctor continued Venetoclax for 6 more days since I was having serious side effects like chills, muscle pain, and headaches,  along with fever of about 100 f.

I started this treatment from 13th February and completed it by 19th February. I had no major complaints until 15 days. Thereafter, my blood counts continued to fall rapidly and I would feel very sick and fatigued. Further, I had a fever of 101 f along with chills, body aches, and headaches.

Going to the hospital

I was admitted to a hospital and after treating me with antibiotics and antifungal injections, my fever was normal. During this period also I was transfused blood/platelets every day. After two days of no fever, I was allowed to go home. The treatment continued at home.

After 2 days, I again had a fever and was admitted to the hospital. Blood/ platelets transfusion continued along with high antibiotics/ antifungal medicines. By now, my Hb had reduced to 4•5, WBC 600, and Platelets 1000.

That night I had severe chest pain, and an ECG revealed a minor heart attack. I was shifted to the ICU and was on oxygen support with antibiotics/ antifungal injections treatment. I had an x-ray, which showed infection in the lungs.

I was requiring more and more oxygen to survive. The doctor had lost hope. I wrote this letter to my husband so that it can be helpful to other patients. According to me, I was put in this precious condition due to the treatment of Azacitidine and Venetoclax.