Fatigue and Vidaza

[deb m]

hi everyone,
does anyone have any good info on fatigue and vidaza. my dad is on round 3 (next week) of Vidaza and is experience EXTREME fatigue. he is having trouble even getting up out of his chair. otherwise is doing fairly well. his blood counts seem to be stabilizing a bit. he is needed tx a little bit less often. we are hoping it gets better as he gets more rounds. anyone have any good ideas? he is having a lot of trouble eating and his weight is down. this may be part of it. he just doesn’t have a taste for anything. his taste buds are totally shot, i guess.
thanks!
deb

[eve]

deb

my dad took megestrol(prescription) to help increase his appetite – it helped as long as he took it

good luck
eve

[deb m]

they just gave that to my dad! i had forgotten about that as he has not started taking it (or maybe took some today). any other advice with regard to vidaza? i see that your dad took it for quite a while.
thanks, Eve!
deb

[eve]

not much advise except that you must be very careful of infections – not only for patients on vidaza , but all mds patients – any infection can really get out of control fast- if your dad is having trouble eating then let him try the food supplement drinks and he can add ice cream or fruit and make a smoothee out of it – any which way he can to get those calories in him, because the weight loss is not only him not eating, but the body using extra energy to sustain itself due to the mds

if you have any questions feel free to e-mail me

good luck
eve

[3kids1dog]

My husband is starting round 2 of Vidaza tomorrow so it was good to see what may happen. First round went with no real problems, fatigue only but wasn’t too bad. We will see what the next round brings. I know my husband’s doc has been giving him an antibiotic to keep infections at bay. He has been getting a severe reaction to mosquito bits in the last couple weeks that he has never had.

[deb m]

thanks, Eve. i will get my dad to try the ensure with ice cream. that’s a good idea.
we are definitely careful about infections.
Julie, please let me know how your husband does on vidaza. i hope he continues to do well with it.
deb

[3kids1dog]

Thanks Deb. He started round 2 yesterday after it was delayed a week while doing another bone marrow biopsy. I hope that this time it goes well. I do understand that the counts will get lower and the fatigue will get worse. I guess we will take it a day at a time.

[deb m]

my dad’s third round of Vidaza has now been postponed to see if he can get some strength back. he is just so exhausted!
deb

[3kids1dog]

This time around my husband seems to have more fatigue but it is also in part because he is working full time. When he had the first round it was summer vacation and had plenty of time to relax(he is a teacher at a Middle School). He has also complained of a funny taste in his mouth. Anyone had that? He does get a Nuelasta shot tomorrow, we will keep our fingers crossed.
Deb I hope your father’s 3rd round is not postponed for long.

[deb m]

my dad is also a middle school teacher! he is teaching part time this year as he doesn’t have the strength to teach the whole day. the kids have been fantastic! they really love him. my dad was so relieved to have the 3rd round postponed. i don’t blame him. it has really hit him hard.
my dad’s appetite has been really low with the vidaza. he says everything tastes bad.
deb

[3kids1dog]

My husband is wondering when he will have to stop teaching. He teaches PE/Health. What does your dad teach? His dr. said that we will address that again in a couple of weeks. I would like him to cut back so he can focus his eneregies on our kids instead of being tired and grumpy when he comes home. My husband did not like that his 2nd round was postponed, he just felt that it would then take that much longer to get to the BMT. I am glad to know about the increased fatigue however as the cycles continue and also the bad taste in the mouth. I guess he was fooled when the 1st round went so smoothly.
Takce care

[deb m]

my dad has taught geography for years. but he is officially on a leave of absence as of yesterday. he is just too weak to teach. the doc says he may not have much time left at all the way he is going. weeks. so he is putting his affairs in order and saying goodbye, etc.
deb

[3kids1dog]

I am sorry to hear about your father. I hope and pray for the best for you and your family during this difficult time.

[deb m]

thank you so much. i think this thing has finally gotten the best of him. his body is really going down hill. the good thing is that mentally, spiritually and emotionally he is doing very very well.
deb

[Mary4Mike]

Dear Deb,

It sounds as if your dad is experiencing the peace that comes from knowing the Lord. You and your family are in our prayers.

Take care and stay strong,

Mary

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