Starting Vidaza

[imv]

Hi everyone,
My mom is about to start Vidaza (5 day regimen). Any advice on how to minimize side effects? I realize that different people respond to it differently but was curious to get your experiences. Do the side effects continue through the "off" period, or are they typically confined to the treatment days? During the "off" period, will she be able to resume normal life, travel, etc?
Thanks for your help.

[sobrien]

Today I finished my 8th Vidaza 7-day cycle. I have had only one side-effect and that is constipation, quite treatable.

I am curious about the 5-day vs. 7-day cycle. Since the FDA gave approval to Vidaza based on the clinical trial of 7 days it is the usual dosage. Where is this treatment being given and were you given a choice of 5 vs. 7?

I would like to go from 7 to 5. I am assuming that the total dosage of 7 is divided into 5 days?

sobrien

[Kathy S]

My husband had slight side affects that stopped when the treatments stopped. His main one was constipation with nausea shot at treatment, went to taking the pill, had little nausea. Headaches are his biggest complaint and just not feeling well, but again after treatments he does very well, saying he feels better than he has in a long time. I do green juicing for him plus a few other alternates that I have researched. After 2 cycles of 7days he went into complete remission and is currently on 5 days and 3 weeks off.
Diagnosed June 2013. Had very low blood counts, platelets, WBC, etc. He had had his transplant conference at Moffitt Center in Tampa,Fl. Going in Dec 4th for a second BMB t see where it is at.

Best of luck to your mom. Keep the faith and prayers help. It can be a roller coaster ride.
Sincerely, Kathy

[DebS]

My husband had 6 rounds of Vidaza before going to transplant.

When he had them via IV, they took longer but I thought that he did better. He did not have nausea and discontinued the meds they gave him before treatment as they made him severely constipated.

He later opted to have the shots in the stomach. Those left him with horrible red splotches and sore spots at times. However, he preferred these due to the time factor. IV took over an hour--shots took about 15 min.

I think it is a very personal choice. If it were me, I would have preferred the IV. The drawback there is that you have to keep the line (if they leave it in) dry. After several treatments, it can be difficult to find a viable vein.

Probably the best compromise, if your doctor goes along with it, is to do IVs part of the time, then injections in the stomach to give veins a rest.

What ever the side effects, nausea, constipation or headaches, there should be some medicine available to help with these.

Best of luck to you.

Deb

[sbk007]

Originally Posted by sobrien

Today I finished my 8th Vidaza 7-day cycle. I have had only one side-effect and that is constipation, quite treatable.

I am curious about the 5-day vs. 7-day cycle. Since the FDA gave approval to Vidaza based on the clinical trial of 7 days it is the usual dosage. Where is this treatment being given and were you given a choice of 5 vs. 7?

I would like to go from 7 to 5. I am assuming that the total dosage of 7 is divided into 5 days?

sobrien

Its confusing but some doctors don't follow the package insert. We are all different. I have had 4 rounds of 7 days every 4th week 3 rounds of 5 days every 4th week and after round 7 my doc moved me to 5 days every 5th week. One member has had 20 cycles 5 days every 6 weeks.
http://forums.marrowforums.org/showthread.php?t=3882

[imv]

Thanks all. My mom wasn't given a choice of 5 v. 7 -- she was put on 5 because her doctor's office is only open Monday through Friday. I would have preferred the 7-day regimen, as it is better tested and is potentially more effective. Though there are some studies that say both types of regimen produce similar results, there are others that suggest that the 7-day protocol has a better response rate and possibly longer survival times.
As for the dosage, I'm not sure what it will be for her.

[Kathy S]

My husband was given injections at MD Anderson in Orlando 7 days/28 days. After going to Dr. Hussein in Leesburg they changed him to IV. He had problems with the veins and he was frustrated every time he went in for it, so decided to have a port put in. Much easier. He has never had 7 days continuous, due to the office being closed, so it is Mon-Fri, Sat and Sun off and again the following week Mon and Tues.
To shower we just put cling wrap over the port connections and tape on sides and top. Keeps it dry and it is fine. It is removed on the weekends so he gets a break.

[Birgitta-A]

Hi IMV,
My doctor who is a specialist in Vidaza says that nobody knows how Vidaza should be given for best results.

One study shows that when they give Vidaza during 5 days every 14 days instead of 5 or 7 days every 28 Days 70% of the patients respond compared to about 50%. Look at my post at News.
Kind regards
Birgitta-A
74 yo, dx MDS Interm-1 2006, positive results with Thalidomide + Prednisone 2010 - 2013. Now trying Revlimid.

[Kathy S]

Everyone has their own results. My husbands doctor told us that for him to be in remission after only 2 cycles 7/28 , less than 33% have that kind of response.

[wilsuz]

Hi, my mom (in her early 80s) has been on the 5-day/month intravenous Vidaza regimen for 6 months. Her biggest side effects have been constipation and fatigue during treatment week. She just had a port installed because she has difficult veins and was getting a lot of bruises from the IV needles, and reported that the latest round of treatment was much more tolerable as a result. She hasn't had to curtail her activities too much as a result of Vidaza treatment, other than taking care to avoid high-risk infection situations. If anything, the treatments have enabled her to be more active than she had been before starting them.

The Vidaza treatments have definitely helped her -- she's going 4-6 weeks between transfusions now and getting Aranesp about 1x a month. Her energy levels have improved noticeably and she took a 5-hour (each way) solo car trip in October to attend a high school reunion, which she definitely would not have been up to when she started treatment. I think her hematologist went with the 5-day Vidaza regimen because she felt it would be tolerated better by an older patient.