Cedazuridine / decitabine for Myelodysplastic Syndrome User Reviews

• Sue...
• Taken for 2 to 5 years
• September 17, 2024

Cedazuridine / decitabine "After reading the very negative review, I thought I should tell of my more positive experience. I started taking INQOVI two years ago when I had a 5Q deletion with my MDS. Previous to that, I was taking support for the pancytopenia resulting from MDS. The first chemo drug I tried was Revlimid. It stopped working after six months. A short time later, I was prescribed INQOVI. Other than some fatigue and 'Chemo Brain Fog,' I have had no side effects. It took a while, but my RBC, WBC, platelets, and neutrophils eventually started to reach a low normal, with my hemoglobin reaching a whopping 12.4! I describe my cancer as a rollercoaster, and I am just hanging on for the ride. My numbers rise and dip, but in the last year or more, I have not needed any blood transfusions: whole, RBC, or platelets. My hope is that I can stay on this for the rest of my life; my concern is that it might stop working for me. I am in my late 70s and want to live a lot longer. So far, so good! Thank you, INQOVI!"

• Ser...
• Taken for 1 to 6 months
• January 21, 2023

Cedazuridine / decitabine "This drug was so bad that I would rate it as life-threatening. I was taking 1 tablet daily over 5 consecutive days a month. When I was on the fourth month, the first tablet of the week, I immediately experienced my legs and arms being cooked from the inside out. They looked like I had been in a fire. I immediately stopped taking it, and over the next few days, I had lost my desire to eat and drink. I became very weak, and after 4 days, I had to go to the hospital emergency room, where they started treatment with fluids, steroids, antibiotics, blood, and platelet transfusions. My kidneys and liver had shut down also. After a few days, all the skin over my entire body was peeling or flaking off. My fingernails and toenails came off, and my feet started to bleed. After a while, it started to destroy my teeth also."

• Lin...
• Taken for less than 1 month
• December 16, 2020

"I started on this drug, 35 mg for five days. Those days went fine, felt okay, but 8 or so days later, my platelets went to 13, my white blood cells went to 226, my red blood cells to 7.6. I had to have 2 units of blood, one unit of platelets, and so far several injections of Zarxio for my white blood cells. One in 10 get this response, and I got it. The doctor has taken me off the drug as I am too sensitive. Extremely bad mouth sores, so far my white blood cells have gone to 0, red blood cells at 7.2, platelets have gone up. This is my journey. I am very sick. Really understand and investigate this drug before you take it."