MDS DELETION 5 VIDAZA
January 31, 2020 at 10:07 am #50085ALENE FARBERParticipant
0Hi to all I am a 71 year old female. I was diagnosed with this about 8 months ago started Revlimed ha to stop severe itching. Now it shows progression to 12 % blasts. Dr wants e to begin Vidaza I am scared. 222 years ago I had a lyposarcoma in my thigh heavy chemo surgery radiation and this is what caused my MDS. Five years ago I took Retuxin for Lymphomo it was cured as well. ow the thought go going trough HELL again scares me. How much can my body take? I am an active woman golf etc. haven’t been able to do this lately.Would you recommend T
the Vidaza? Are there terrible side effects? Thank you so much a reply is appreciatedJanuary 31, 2020 at 11:06 pm #50086Owen MaguireParticipant
OK Alene I was diagnosed with MDS ( Trilineage) in 2012. No transfusions. Watch and Wait until 2015. Hgl took a dive and placed on Epotine Alfa and Hgl came up but not to normal level. In 2017 WBC AND PLATELETS took a dive and started Vidaza in April 2017. Today I completed my 37 cycle. Other than lack of stamina and sore stomach for about a week after injections I am doing well. I am now 81 and my wife is at home but progressing through stages of dementia. She was a brilliant woman who shared her career with taking care of myself and daughter. Now I am doing my besto take care of her at home and deal with my illness. I am told by my Oncologist And Chemo Nurses that I am a poster patient for Vidaza. It took 4 cycles of Vidaza to show any positive results. Blasts were 4% when diagnosed, went up to 6% and were 3% January 2018. I usually have a couple of days after my Vidaza Injections when I am really down and have made lots of dinners frozen for this period. It seems that everyone reacts differently to Vidaza. I was a person who played golf 5 days a week but for lack of stamina had to pack it in in 2018. Still walk 3 kms 3 times a week but at a slow pace. I hope that this info helps you out in making your decision.February 1, 2020 at 7:08 am #50087Kathy StermerParticipant
As stated above, everyone reacts differently as each disease components unique. I tried Revlimid without any positive changes and switched to Vidaza also without any results. After 6 months of treatment, decision made to discontinue drug. While taking experienced further dip in already low labs (hgb and wbc), fatigue and local soreness at injection site. Was not excited to start chemo but gave it a go and am currently doing supportive care only (transfusions when needed and trying to stay infection free). Listen to my body. It’s an individual decision and results vary from person to person. For me my overall quality better but also know options limited for treatment outside of transplant which I’m not interested in due to my long career as a nurse and guess I just know the full impact of such a big decision. Gather all the info you can and decide what’s best for you.February 1, 2020 at 9:55 am #50088ALENE FARBERParticipant
Thank you so much for a reply!!! I am deciding if I should do this one day then I am negative the next. You stay well and God bless you and your family.
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