Weight Loss/Sub Cutaneous Vidaza

[Diver down]

I am a recently diagnosed MDS patient and just started first cycle of Vidaza yesterday. Second day was today. 3 shots each day in belly for next 5 days. So far feeling "full" but no nausea or sick feeling. Does that mean I probably won't develop sickness or might that come up subsequently? Also, how much weight might I expect to lose once I'm inpatient for BMT and the subsequent 100 days?

Thnaks Very Much,

Diver Down.

[Whizbang]

I was 197 when I entered for BMT, (gained a few extra on purpose)...

With water weight (IV's) I got up to 202 D-4, now at D+5 I've settled in at 182... I'm assuming I will lose at least another 10 - 15 lbs. due to the mouth sores (Mucositis)...

I can drink three choc milks per day (390 calories) and I am on 1,000 calories IV with 70 Grams of protein...

Best of luck to you, and God Bless...

[Diver down]

Thank you Whizbang..We have similar profile, low counts across the board and bad cytogenetics, waiting for match from Marrow Bank. But I'm 57 but otherwise in great health so I'm feeling optimistic. Thank you for your helpful response.

[sbk007]

Do you take anything before the vidaza to prevent nausea?
Its a good sign that you haven't experienced nausea. Vidaza can bring your counts down before they go up.
After the first round of Vidaza my WBC went from 5 to 2.5, so I had to delay the 2nd round by a week. Whizbang had Dacogen before his BMT and experienced the same thing with his WBC so don't get worried if your counts get worse before they get better. Hang in there.

[Diver down]

Thank you sbk007...I take a very low dose of Zofran....My starting point WBC is already real low...1.9 with 700 nutrophils so when it goes lower, I'll probably be on isoloation....I can deal with that (I'm currently reading 100 Years Of Solitude) but I'm trying to understand whether the fact I haven't gotten sick yet on Vidaza, means it probably won't happen in the future. Or can there be a delayed response ?

[sbk007]

The Zofran should keep the nausea at bay. I take an 8mg tab of zofran an hour or 2 before the vidaza. vidaza.com has more info than you need but if your interested check it out. The delayed response most probably wont be nausea. After your 7th day you might feel tired or just plain off. Your counts may go lower but maybe not. I hope you stay out of isolation. They might give you a shot of neuprogen to boost your WBCS. A lot of the complications you read of occur in an age group higher than ours.
Take Care, Steve

[Chirley]

Hi, I've had neutrophil counts of zero on many occasions and have never been isolated.

[Tii]

I didn't get side effects from Vidaza until the 4th day in every cycle and right now I can't remember how long they would last, but the skin reaction was immediate from the shots and after few days of trying they switched it to the IV form. Much better!

Remember to take zofran an hour before, but even if you forget to take it before, just take it after, the nausea symptoms are not immediate. You should keep a diary or a log of your side effect symptoms to discuss with the doctor, as there are other alternatives if it doesn't help out.

I gained maybe 10 lbs in fluids while in the hospital, then after few months at home started losing weight. Now, 11 months later I am 35 lbs lighter, and have maintained the same weight +/- 5 lbs.
Stay active, go for little walks, lift little weights everyday now and your recovery after transplant might be easier. But also give yourself a break!

Hang in there!! All the best

Tii - MDS (11mo old, post BMT)