Question for everyone-Vidaza

[LuAnn]

Hi, my dad has just started taking Vidaza and completed his first cycle. Has anyone taken it or have information on it? He’s had some severe reactions and I’d like to know if this is a common response. Thanks for your help

[Sandy L]

Mike will be staring Vidaza shortly. What severe reactions are you experiencing? Terri will probably respond to you since Bon had been on Vidaza for some time.

Keep us posted. Good luck

[Terri]

Hi Luann, Bob has been on Vidaza since Last November, Really no side effects, he takes an anti nausea before the shots (Zofran ODT) and the only other thing are the bruises where he gets the shots but they are doable.
What kind of side effects/ reactions did he have. I sent you a private message with my email address as it does not come up in my profile. If you have any questions you want to ask us. Bob does take a lot of supplements and vitamins as well. His hgb was up to 11.4 before he started this round.

[Kathryn]

Hi LuAnn,

My father took Vidaza for two rounds. The fist round was extremely hard on him, especially around the 14th day. He was very determined though and kept moving… dressing in the a.m., walking around the house, 2lb. weights in his hands excercising his arms while he sat… Honestly, I don’t know how he did it feeling as drained as he was and with his legs being so extremely weak. He also rec’d. the anti-nausea meds. along with it that helped. The second round was much easier on him. I think part of that was because he was stronger that time around.

If you have any questions, please feel free to ask.

Kathryn

[frank]

i did take it at the end of May, i did have the lowest point of everything, but the most worse thing is i caught an infection in blood, and i had an reaction of the antibiotech they used for me. i was hospitalized for over 2 weeks, high fever(above 103 for the reaction of the antibiotech).

Frank

[diner]

I’m new to the forum. I’m starting Vidaza Sept. 6th and am very nervous, but I’m transfusion dependent right now. I had a stem cell transplant for Lymphoma in 98 and have had the MDS since 2003.

[diner]

Quote:

Originally posted by Kathryn:
Hi LuAnn,

My father took Vidaza for two rounds. The fist round was extremely hard on him, especially around the 14th day. He was very determined though and kept moving… dressing in the a.m., walking around the house, 2lb. weights in his hands excercising his arms while he sat… Honestly, I don’t know how he did it feeling as drained as he was and with his legs being so extremely weak. He also rec’d. the anti-nausea meds. along with it that helped. The second round was much easier on him. I think part of that was because he was stronger that time around.

If you have any questions, please feel free to ask.

Kathryn

[diner]

Kathyrn, I really don’t know what I’m doing since this is my first time on the forum. Got the web site from “Jim Bob”. I’m going to be startin Vidaza Sept. 6th. I’m 62 and have been through Lymphoma twice (last time had stem cell transplant). Now have MDS and am transfusion.
I thought you had to take Vidaza for 4 months to even know if it works. Diner

[frank]

diner,

i will start it again sometimes in Sept. Don’t be afraid of it, but you have to cautious on it. For me, i really don’t take it seriously in the begining, but the consequence after it almost kill me. it is a kind of chemo…

My experience is, after 10-15 days, you plts and wbc will drop to its lowest point, it is the time of your most dangerous period. Since i am transfused patient, too, i have to get blood in that period, but my vein was destroyed by the chemo-thearpy(vidaza), so they have to put a pick-line on me, but the operation cause me infection in blood stream, then i have to use antibiotec, the worse thing is i am alargy to the antibiotec they used, the high fever for 4 days is my worse nightmare.

so be cautious on it…

Frank

[Jimbob]

diner,
Don’t freak out. Check out what others have said about vidaza previously by checking the index of posts back several months. Also, I am sure that a number of people will soon post more information. Also, don’t be afraid to aask questions at OHSU, they will provide you with answers so YOU can make an infromed decision about YOUR healthcare. I hope things went well today.
Jim

[Terri]

Diner, Bob is in his I think 8 round of it. His counts hang on pretty well. The week he takes it he gets very fatigued (Actually this is his week) so he takes a lot of cat naps) Then the week following he is tired as well but after that starts coming around again. He does a lot of Vitamins and supplements for the Immune system and also to help boost the HGB and RBC.
He is no longer tx dependant since Dec of 2003. This is second time on the Vidaza first time only on it for six months and his bMB came back good and he was off of it for 7 months and the blast started coming back. so Now the doctor has him back where the blast are at bay but is keeping him on the Vidaza as a Mtc since he says if Bob goes off the next time he needs it he may not respond as well. Don’t be afraid of the drug Make sure you get an Anti Nausea medication – Zofran ODT is good you dissolve it on your tongue take it about 30-40 minutes before you go for your shots. That was the biggest side effect Bob had to deal with.
I wish you wll with this drug and I hope you respond as well as my Bob does.
God Bless

[Kathryn]

Hey Diner, as JimBob said, the more educated you are the better decisions you can make regarding your care. Definitely ask questions… to anyone & everyone.

My dad’s leukemia began to progress quickly and the doctor felt that the Vidaza wasn’t as effective as needed so he was switched to Trisenox. The “heavy duty” chemo wasn’t an option as they felt he wouldn’t be able to handle it. From what I have been told, Trisenox is used on older patients when there are no other medicinal alternatives. The doctor did comment that while in the two weeks he was on Trisenox, he was possibly having residual effects from the Vidaza…. It was working, but just not well enough….

My father & his wife weren’t big question askers, nor do I feel my dad was upfront w/ how he was feeling….. they just followed the doctor’s orders, and his children were not allowed to advocate for him. I feel not being completely proactive was a critical mistake. Along w/ asking questions, please always let the doc. know how you are feeling… You can’t assume they know…. The more they know, just like you, the better they can care for you.

Diner, you are in my prayers. I hope that everything goes well for you and that Vidaza is a successful option for you. Take care and please keep us posted on how you are doing.

With best wishes,

Kathryn

[diner]

I started the Vidaza yesterday (Sept. 6). I got another shot today. I took the anti-nausea pill first and it worked great. Please pray the Vidaza will help me. When they said my platelets would prob. go down the first round, that is really bothering me because they are only 8000. Although a hand count was done because it was discovered that my platelets are so large that a machine doesn’t recogize them by the size. The hand count was 26,000 (still low but better than 8,000).

[Harold]

Diner, I also have low platelets (20,000) and I have been on Vidaza for 11 months. I do not see large swings in my blood counts during the Vidaza treatments. It took 3-4 cycles of Vidaza before I saw improvement but it has significantly reduced the blast count in the bone marrow over the past 11 months. Good luck to you.

[diner]

Harold, You’re the first one that mentioned low platelets too. My count the other day was 8,000, has been as low as 4,000. My doc. had the hospital hand count them and they came up with 24,000. Most of the platelets were so large that the machine wouldn’t recognize them. Have you had to have platelet transfusions since starting Vidaza. I just started the Vidaza Tuesday and the only side effect is large injection site swelling. The doctor is giving me a steroid for 10 days to see if it will help reduce the irritation. Diner

[Author]

Posts