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5tratusParticipant
We just finished the 4th cycle of Vidaza last monday – after injection 5 it still hits her very very hard – she’s still recovering – So much fatigue. Her blood levels are all still really great (except for low leukocytes) – but as of yesterday she was still massively fatigued and in bed most of the day, barely able to get to the bathroom – eating almost nothing in spite of lots and lots of anti-nauseates.
It also puts her in a big brain-fog – and just as weak as a kitten. But after cycle 3, one week after the injections finished, she did start to really come back into her own and get some energy and strength back, not to mention her mental orientation . So, we’re hoping today and tomorrow she’ll be lots better. Vidaza is certainly a difficult med for her, but the hematologist says that her good blood levels suggest that it’s doing the job.
Sadly, we can’t get Venetoclax here in Canada yet for AML, it’s too new and Health Canada has yet to approve it for use with AML, though it is approved for some kind of lymphoma – at a different dose. fingers crossed we can get it here soon – or, if the vidaza stops working, that we can get a compassionate exemption.
5tratusParticipantupdate: so my mother just finished the 3rd cycle and she can barely move – she can fall asleep on the toilet, or in the middle of a sentence… she’s so tired.. she finished her last injection in round 3 .. three days ago – I’ve never seen her so tired.. it’s heartbreaking.. does anyone have any encouraging words for us. i’m not sure she’ll survive another cycle.
on the positive side.. just before we started this cycle, her blood counts were almost normal and suggested that it’s working
5t5tratusParticipantThanks 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.
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