I am taking 400mg venetaclax for seven days with five days of Decitabine iv. I was doing 21 days at first then went to 14 days, now 7. I would like to do 5 days. I take the pills which are big with rice pudding or applesauce. That helps. Good luck!!

Thank you so much for your incredible story, i know we are all different and will not respond the same, my dr wants me on 400mg of Venclexta and i think its too high, what strength were you takin?

We are all like snowflakes, they resemble each other, but each are different. Your reactions to the meds might be different than mine or any other person’s reactions. I don’t think I had significant problems with venclaxta, I think what I felt in the days after my infusion series ended was the result of the chemo.

Chemo is hard. I knew very little about it when I started. I have friends that had received chemo- all I knew was it killed their cancer, made them sick sometimes, and some lost their hair. That was the total extent of my knowledge. My oncologist called chemo a “dumb drug.” Yes, it kills cancer cells he told me, but it also kills a lot of good cells. Chemo kills fast growing cells (cancer) but it also kills other fast-growing cells in our bodies: digestive cells of the stomach and intestines, hair cells, and taste buds. Chemo left me with no appetite and all food tasted bad at worse, just bland on a good day. I had to force myself to eat to minimize weight loss. The other thing I learned is that you don’t automatically start feeling better the day after chemo ends. The chemo continues to be very active until your blood levels reach their lowest point (7-14 days later- called nadir) and then you start to get better.

I lived with low red, white and platelet counts from diagnosis until 4 months post-transplant. The chemo of course drove them low, as expected. My hemoglobin and red count would run 30-40% low, with hemoglobin regularly in the 8’s. This caused a lack of energy, fatigue, and some dizziness. My white cells were very low and I was very susceptible to infection. There were times my white count was as low as 0.1. I was very careful and limited time outside the house. I said I was on house arrest without the ankle bracelet. The chemo and cancer also caused my platelets to be very low. I did receiver periodic transfusions.

The main way I survived this was exercise. When I was hospitalized initially, both physical therapy and occupational therapy were in my room in the first 36 hours. Both had walking schedules and simple exercises that they wanted me to do daily. Every day, no matter how bad I felt, I walked the halls at least 3 times a day (8 laps of the floor = 1 mile, so said PT). Some days I couldn’t walk long, but I walked. Any time I started throwing myself a pity party, I had to walk until the party was over. I practiced this both in the hospital and at home.

My response is what happened to me- remember we are snowflakes; your experience will likely be different. It is an honest report, not meant to scare or alarm you. Try not to worry about what you don’t know yet, one day, one hour at a time. Worse thing I ever did was spend too much time on the computer with Dr. Google, it didn’t help at all.

Good luck, cancer is tough, but you are tougher!

Ill be praying everything goes well for that, duch a journey. Are you feeling well now?

Also does anyone not on treatment yet have super low, wbc , red counts and platlets, another concern starting chemo with those counts