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Dacogen

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This topic contains 5 replies, has 4 voices, and was last updated by  Carole Tirico 1 week, 3 days ago.

Viewing 6 posts - 1 through 6 (of 6 total)
  • Author
    Posts
  • #46604

    Donna
    Participant

    I will be starting Dacogen soon and would like to hear about others experience with this treatment. I am curious if I will be able to work and function close to my normal.

    #46737

    Terri Erdman
    Participant

    Hi Donna,
    My husband is 58 and diagnosed with high grade MDS with extra blast and TP53 mutations on January 10. He was very active and in great shaped. He had 2 courses of decitabine. He continued to exercise and function normally during treatment. We even took our RV from WI to Louisiana between treatments!! He tolerated this drug quite well. No side effect, kept his hair and blasts dropped from 9% to less than 1%.

    He received HSCT from our son on April 24th. He has had significant GI effects from conditioning, transplant and anti GVHD drugs. However, those seem to have calmed down. He is at Day +19 and hoping to go home within the next couple of days.

    #46994

    Carole Tirico
    Participant

    Hello Donna
    Have you started the Dacogen yet and if so how is it going for you? I am starting on Dacogen Monday and would love to hear from you.

    Carole

    #47011

    Donna
    Participant

    Hi Carole,
    I will start my 3rd cycle this Monday, so I’m a little ahead of you and doing okay. My numbers were pretty low when I started. WBC around 1.2, platelets around 30,000, others I forget but all low. My first infusion, I had Compazine in the IV to cover any nausea. I just felt very fatigued and generally spent. I went home and took a nap right away. I never did have nausea, so the next day I decided to try it without the Compazine because I know that can make you sleepy and I was much better. So, I have Compazine pills at home if I need them along with Imodium and Colase in case of any need. However, I have not used them. My ANC has gone down to .1 and I am not allowed to be around crowds or sick people. WBC just went up to 1. Platelets had fallen to 11,000 and I had a platelet transfusion and now they are up to 21,000. I have no complaints from the treatment. I am on daily antibiotics until my WBC and ANC go up. I’m hoping by 6th cycle I see that the chemo is working. I am glad I started when I did. Why wait till counts are lower and I’m sure your doctor wouldn’t recommend it if he didn’t think it was best for you. I wish you the best. How old are you, if you don’t mind me asking. Are you a candidate for stem cell transplant in the future?
    Donna

    #47013

    Dale Frank
    Participant

    Donna, thanks for the info. Is Dacogen similar to Vidaza? I’m about to do 4th cycle of Vidaza. Still getting monthly transfusions for low hemoglobin. My WBC is only 1.0. Diagnosis of RABII with 8% blasts about 4 mos ago. Best wishes to you and all on forum.

    #47023

    Carole Tirico
    Participant

    Hello Donna

    I am 75 years old and will be starting Dacogen today – I am a little anxious – I have never taken many pills and don’t like all this medication the Dr. is giving me. I have only taken a vitamin and a blood pressure pill only for many years and now all of this.

Viewing 6 posts - 1 through 6 (of 6 total)

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