I'm Back!

[Jill2008]

Hi Everyone! It's been a long, rough road, but I'm back. Eight months following my Allogeneic SCT in May 2010, I relapsed. My doctor started me on Vidaza and I completed my 20th cycle three weeks ago. I haven't needed any transfusions since August 2012. My third granddaughter arrived 5 weeks ago and life is good!

[Neil Cuadra]

Jill,

How nice to hear from you after 2 years. I remember following "Jill's Journey" and wondering how you were doing after you went home from Stanford.

Congratulations on being transfusion-free and on your newest granddaughter too!

You've been able to stay on Vidaza for a pretty long time. Have you had trouble with side effects or other aspects of the treatment?

[sbk007]

Congrats! Glad you are feeling good. Sorry you had to go through all that.
I finished round 6 a week ago. After the first 4 rounds they cut me to 5 days every 4 weeks (I responded after round 1 and by round 3 my counts were normal). Last visit the Doc said he'd be moving me to 5 days every 5th week. So, I'm wondering if you go 5 days every 6 weeks or 7 days every 6 weeks? I get the IV also. 150 mg over a half hour. Fortunately no side effects as of yet. I take an 8mg tablet of Zofran an hour before IV and that's it.
Stay well! & have fun with the new addition to your family!,
Steve

[Lori Patrick]

Congratulations Jill! Keep enjoying life!

[Jill2008]

Thank you all!

Steve, I get 124 mg. Vidaza IV for five days every six weeks. I started out at 4 weeks but my counts didn't recover fast enough. I am also pre-medicated with IV Zofran. In the beginning, I was very nauseated and had no appetite, but now I have very little side effects. Once in awhile I get a little stomach cramping or feel a little tired, but nothing I can't deal with. I will begin my 21st next cycle on Monday! I saw my hemotologist at Stanford last week to have a back-up plan in place when this stops working, but he said there is not much out there right now that is better than the hypomethylizing agents. We will have to look at other options when the time comes, but for now he is extremely happy! Best wishes to you!

Neil, thanks for keeping this site going. I was so scared when I was first diagnosed and I knew I could always look here for advice and support.

[sbk007]

Thanks Jill! its encouraging to see someone on a schedule like mine.
People ask me why my hematologist isn't sending me 7 days like it says in the package insert, and I have to explain the whole clinical trial dosing thing, and how they never did studies on when to cut back or adjust schedules and we are all different, etc., etc. Keep up the good work.
Hoping I move to 5 weeks soon. 5 days a month is a lot better than 7 so 5 days every 5 weeks should be even better than that! Initially I was going to get Zofran IV but when I found the pills at Costco for 50 cents a piece he told me to take it orally to cut down the infusion time. I take 1 8 mg tab an hour or 2 before and so far haven't had any nausea, before after or during the IV. Stay well!
Steve

[Jill2008]

Steve, I had started out at 7 days too, but it was too much for me, especially every 4 weeks. I had just relapsed following a transplant and was still very weak plus I am 5'9'' and only weigh 125 lbs. Yes, everyone is different! It wasn't until cycle 12 that I no longer needed transfusions. The 5 day schedule every 6 weeks seems to be working fine for me. I should check into taking the oral Zofran before I go in though. I have some at home and am so surprised no one has even suggested it. It would sure free up some of my time and also for the nurses at out-patient chemo. Thanks!
I hope your new schedule works well for you. Stay in touch and let me know how you're doing.
JILL

[sbk007]

Originally Posted by Jill2008

Steve, I had started out at 7 days too, but it was too much for me, especially every 4 weeks. I had just relapsed following a transplant and was still very weak plus I am 5'9'' and only weigh 125 lbs. Yes, everyone is different! It wasn't until cycle 12 that I no longer needed transfusions. The 5 day schedule every 6 weeks seems to be working fine for me. I should check into taking the oral Zofran before I go in though. I have some at home and am so surprised no one has even suggested it. It would sure free up some of my time and also for the nurses at out-patient chemo. Thanks!
I hope your new schedule works well for you. Stay in touch and let me know how you're doing.
JILL

Jill, My hematologist did not know that there is generic Zofran and he knew I had a bad prescription benefit and so he ordered Zofran by IV. The brand name Zofran is 16-18 bucks a pill, but even at that price its worth it because you take the pill and it works just as well as the IV. I found that Zofran is popular for morning sickness and a lot of people get the generics its called ondansetron. I hate to say it but the hospital can bill for the infusion time and the drug but I know a lot of people take it IV before treatment. Hence, no conspiracy theories from me.
So when I told my heme that they were 25.00 for 60 pills he thanked me for the info and said to take the pill. Then I said if you prefer the IV ill do it, he said no no no, same stuff and no infusion. Off topic there's some promising studies with Zolinza & cytarabine for patients that stop responding to Vidaza.

http://www.mdsbeacon.com/news/2013/1...a-failure-mds/
Take care, Steve

[Jill2008]

Steve,
I saw my doctor this morning and she said I could take the oral ondansetron. This will save me so much time in the chair! Apparently, the nurses are not allowed to recommend it. Thank you so much for the advice and also for the link. I need to start checking into alternative treatments for when the time comes. I'm happy the Vidaza has worked for so long.
Take care, Jill

[sbk007]

Originally Posted by Jill

Steve,
I saw my doctor this morning and she said I could take the oral ondansetron. This will save me so much time in the chair! Apparently, the nurses are not allowed to recommend it. Thank you so much for the advice and also for the link. I need to start checking into alternative treatments for when the time comes. I'm happy the Vidaza has worked for so long.
Take care, Jill

Jill, I'm glad I mentioned it. I take the pill an hour to 2 hours before Infusion, sometimes it takes a while for the pharmacist to prepare the stuff so its hard for me to take it exactly one hour before. Its worked for me each time, I'm confident you'll have the same results. I go for round 7 next week and hope we'll be comparing notes another 20 rounds from now.
Stay well,
Steve

[Whizbang]

Just an idea of the anti nausea I've been on so far,
Kytril
Zofran
Regalin
Compozeen
Advan

Regalin is my daytime favorite, advan great for nights...

[sbk007]

Ativan? For nausea? sounds good to me...
They got some good drugs there...
I guess they would it is a hospital after all..

[sobrien]

I am still confused about the dosage on the 7 vs. 5 days decision.

What dosage do you get at 5 days? Is it the same as 7 days? Or, do you take the 7 days and divide it into 5 days. I get 117 mg now each of 7 day (819 total). Would that bump up to 163 each of 5 days? It takes 20 minutes now. Would the time lengthen with the upped dosage?

Curious.

[sbk007]

Originally Posted by sobrien

I am still confused about the dosage on the 7 vs. 5 days decision.

What dosage do you get at 5 days? Is it the same as 7 days? Or, do you take the 7 days and divide it into 5 days. I get 117 mg now each of 7 day (819 total). Would that bump up to 163 each of 5 days? It takes 20 minutes now. Would the time lengthen with the upped dosage?

Curious.

No. The dosage stays the same.
If you increase the dosage it could be bad.
Why do some doctors do it and some not?
It depends on the patient and how well their counts hold up(says my doc), and in some cases dosing, and strength need to be adjusted because the patient tolerates it better.
Some like to follow the package insert to the letter, others
don't. Wish I had a better answer but there are so many
dosing experiments its hard to follow and get a conclusive answer.
I think we all start out with 7 days on 21 days off.