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Fatigue – 1st round of Azacitidine

Home forums Patient Message Board Fatigue – 1st round of Azacitidine

This topic contains 4 replies, has 3 voices, and was last updated by  Cecile Huston 1 week ago.

Viewing 5 posts - 1 through 5 (of 5 total)
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  • #44790

    5tratus
    Participant

    Hey, So my mum was recently diagnosed with MDS, which when the tests came back we learned had already transitioned to AML – with 30% blasts there’s just a chance that she’ll benefit from Vidaza/Azacitidine and we’ll buy ourselves a little more time.

    She’s just finished her first round of Aza. and she’s experiencing a lot of really extreme fatigue – sleeping 12-14 hours at night, 2 and 3 hour naps during the day, weekness when walking etc.

    We’ve had blood taken 2 days ago, and they’ll contact us if she needs a transfusion (maybe with a bit of delay over Christmas) – but in the opinion of others, is this a usual reaction to the Aza or does it indicate that she needs more RBCs and we can expect a call from the cancer clinic to line her up for transfusion?

    cheers
    🙂
    L.

    #44797

    mdsfound
    Moderator

    As is the case with other MDS drugs, you may feel even worse before you feel better. You may not see any improvement in your mother’s health until you have taken azacitidine for at least 4 to 6 cycles (about 4 to 6 months). So it’s important to stick with the treatment to give the medicine a chance to work. Her doctor will monitor her during treatment and may test her blood more often due to aza lowering the number of blood cells in her bloodstream. The doctor will also support her with blood transfusions when necessary.

    #44799

    Cecile Huston
    Participant

    I was on Vidaza and a clinical trial for 18 cycles, never any extreme tiredness, but in Nov 2018 I went to Leukemia with 24 blasts, I just started back with Vidaza and a new FDA approved pill, VENCLEXTA, very expensive, we had to get a grant to pay for it, only had 7 Vidaza so far, 1st of Dec. the pill is 2 each day for 30 days, they have had remissions from Leukemia I am told, the side effects are hard to take, my counts are sooo low, I had a blood transfusion (my 1st ever), on Dec. 21st and blood and platelets both on Dec 26th, Dr. tells me once we can get the leukemia in Remission, then will go off the drugs and the counts should come up, so give time for your Mom’s treatments to work, it is a hard cancer to cure, but there is hope.

    #44926

    5tratus
    Participant

    Thanks Cecile,
    I really appreciate your response. My mum is 81 …. i’m not sure her hemotologist will approve anything with really difficult side effects. We’re in Canada – so if venclexta is indicated for her, and isn’t so strong that it will kill her outright – the hemotologist is going to be hearing about it. The internet says it was approved for use in Canada last year.

    I think her extreme tiredness is due to low counts that aren’t at transfusion point yet, but with her co-morbid conditions her energy is right out. I’m crossing my fingers that round 2, starting on Tuesday, goes better than round 1 and that transfusions give her the energy to enjoy the time she has left. The doctor says there’s no chance of remission – she’s already progressed to AML with 30% blasts. But we are all crossing our fingers that the Vidaza does the trick and gives her the 1.5 years we’ve been told is the average survival if it works.

    I don’t know her mutation, which might be best, because I’m not sure how well I’ll deal if the news is bad in terms of likelyhood of the vidaza effectiveness. She’s simply the best person ever, and knowing that we’re losing the best of us is nearly more than I can take.
    The hematologist is already used to me citing case studies and asking questions, you can bet that Venclexta is going to be next on my list of queries.
    5tratus

    #44928

    Cecile Huston
    Participant

    Today will be my 7th Vidaza so 2nd cycle, I had 4 units of blood and 1 platelets in last 4 weeks, now have to have blood work twice a week, I fully expect a transfusion tomorrow, I tire so easily, any steps make me breathing hard, but rest in the recliner gives me back my energy, I just shoveled our front 26 steps of snow. Dr. says they have had good results with a cure using the VENCLEXA tablets along with Vidaza, he started 3 patients on it, he had just gotten back from a symposium in I think Canada and he said that was all they were talking about. It is 2 tablets a day, I did have to start a diuretic and potassium tables as well, my counts are low but will keep this up. I am 76 so not a young person, also I had no health issues before the cancer, was on my meds. My prayers for your Mom. You might ask her Dr. about the Venclexa and his opinion. generic is venetoclax, it is FDA approved.

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