Fatigue – 1st round of Azacitidine

[5tratus]

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.

[mdsfound]

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.

[Cecile Huston]

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.

[5tratus]

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

[Cecile Huston]

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.

[5tratus]

update: 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
5t

[anges]

Hi 5tratus,

How is your mom doing now? I believe what you are saying is true cause if her blood counts were almost normal, that should be a sign that it is working. My mom went through exactly the same. Only her blood counts wouldnt get better after the second cycle but I guess after the fourth. So this looks good. Don’t lose hope, hang in there. My prayers go out to all of you.

[5tratus]

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.

[Kathy Stermer]

Just finished my first week of Vidaza and other than one bit of nausea controlled with taking zofran when I get home and a bit of constipation the fatigue at end of week most profound. Am used to being fairly active and this was definitely noticeable. Hopefully will get a better read on what to expect next round

[Author]

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