User Reviews for Vidaza to treat Myelodysplastic Syndrome
Vidaza has an average rating of 5.8 out of 10 from a total of 13 ratings for the treatment of Myelodysplastic Syndrome. 46% of reviewers reported a positive experience, while 38% reported a negative experience.
Reviews for Vidaza
"My dad had MLS and then evolved into Leukemia (AML). He had traditional chemotherapy but had severe complications. He is going into his 4th cycle of Vidaza and he is doing great. His blood cells counts are lower some days of the month but they recover almost to normal. He had trouble with platelets. At the start he had a lot of transfusions (by now he has almost had 200) but in the last months had been fewer, a lot fewer. And the doctor considers that Vidaza starts working after 6th cycle so his platelet count will increase. The doctor considered bone marrow transplant but he decided that since he is in total remission and doing well with Vidaza they will wait until 9th cycle and decide then. He has no side effects but a little fatigue."
"I have been on Vidaza treatment for eleven years now. Started out with injections every four weeks for a while. Then every five weeks and eventually every eight weeks which I am currently doing. My hemoglobin and platelet counts are a little low but stable. Only side effects that I have are occasional nausea or vomiting and diarrhea. If I take an anti vomiting pill after each treatment I have no side effects. I would say that the treatments have been very successful."
"My husband was diagnosed with MDS, no symptoms. He worked out at gym 5 days a week, had just retired, was enjoying life. At Dr's urging, he started on Vidazia. This was supposed to prevent MDS from going into leukemia and buy time to prepare for bone marrow transplant. He took daily treatments for 5 days, was sick with flulike symptoms, then had breathing complications. The following week, he is in excruiating pain, was hospitalized in ICU FOR 2 weeks, died a horrible death. Pain that no amount of pain meds would control. His last 2 days were in Hospice, so that he could receive the highest doses of narcotics, that can only be administered at end of life. Death certificate read " multi organ failure ". Vidazia destroyed his internal organs"
"I have just started my 2nd month of 7 days of injections. I have had no adverse reactions, except the injection sights get very red and later peel. My white blood cells went down and then started back up. My platelets and hemoglobin are quite low but so far no blood transfusions. I am told each time they will make white blood cells go lower."
"I have taken it for 4 months so far. It is now down to 5 days instead of 7 per month. The shots are painful in several ways. Went to IV after a couple months. The only good result I've had so far is no transfusions. In the fourth month I developed flu like symptoms despite constant vigilance. I have been down for 9 days with this."
"I was diagnosed with CMML approx 3years ago and treatment of Azacitidine started 17mths ago... It has stopped me from transformation to AML and I even self inject when oncology dept is closed... So once a month I do the subcutaneous injections. My bloods are not too bad at all but once when I was off the azacitidine for five weeks, I was going downhill rapidly approaching AML... I was very lucky to be matched with an unrelated bone marrow donor and was supposed to have the transplant in December 2015 but because my heart is not so good (Atrial Fibrillation) there is concern about it standing up to the trauma of transplant... So I'm really hoping that the azacitidine keeps on doing the business otherwise it may very well be my demise."
"Injection site sore for weeks. If in belly, get it beyond belt line. If in underarm, get injections 2 in apart. Day 1, little effect, day 3 start of weakness, day 5 make sure couch fits. 3 days after last injection, start of recovery. Day 5, 2 pints of blood does wonders, day 14 after injection, just hanging on. Maybe another blood pint to help, Day 1, oh gosh here we go again. no vomiting, just strength crashing."
"Through routine blood check up I was diagnosed with Myelodysplastic Syndrome with no symptoms at all but with blasting of cells 18 and after 8 months from having injected Vidaza, blasting of cells now 0. As I am in remission do I still have to go with the Stem Cell Transplant"
"My dad passed away after 5 days of Vidaza injections. He was doing ok all week long , except the injections gave him a very bad headache. RBC coming up to almost normal, WBC on the low side. 1/15/21 he was doing great, ate dinner, laughing, no problems. He went to bed around 9:30 pm. Approx 12:15 am he started vomiting multiple times, finally went back to bed. Vomited blood in the middle of the night. When my mom went to check on him in the morning, he was not breathing or had a pulse. The paramedics were able to get his heart beating again, however he was unconscious, and bleeding internally,and never woke up. He spent 2 days in the CCU where we were also told he had multi-organ failure. He passed on 1/19/21.This drug is bad for him, and it made my Dad pass away after 5 days of treatment. We were not told of any the side effects or even told the name of the drug my Dad would be getting, if we would have known it would finish him off, we would have never let him take this treatment. Now we are planning his funeral."
"Vidaza finished off my dad. (60 yr old). He was active, doing okay, then when he got diagnosed Myelodysplastic Syndrome (MDS) and high risk the dr. immediately started him on 7 days of Vidaza. After three rounds, my dad's liver could not take it anymore. He died of liver failure. Please be careful and talk to your doctor about dif. treatment options."
"Vidaza worked very well and only side effect was some minor constipation cured with softener and milk of magnesia."
"I had 9 or 10 cycles of Vidaza. It did nothing for my MDS."
This information is not intended to endorse any particular medication. While these reviews may be helpful, they are not a substitute for the expertise, knowledge, and judgement of healthcare professionals.
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