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-   -   Azacitidine (Vidaza) first cycle-weekend off? (http://forums.marrowforums.org/showthread.php?t=5554)

Eva's daughter Wed Nov 9, 2016 07:04 PM

Azacitidine (Vidaza) first cycle-weekend off?
 
Hello everyone.

Mum starts her first 7 day cycle of Azacitidine today. Its a Thursday where I am and she'll be having one today and tomorrow and then having the weekend off (because the mobile nurses don't work weekends) and then continuing on for another 5 days. Is this normal? Should I request to take her to the hospital for injections on the Saturday and Sunday?

Also, we have been told that she will feel like a pin cushion toward the end of the cycle... Any magical remedies for the injection site to heal quickly? Rose hip oil was mentioned to us..

Thanks!

Emma

bailie Wed Nov 9, 2016 09:47 PM

I have Vidaza for seven consecutive days. That is how it was approved by the FDA. I feel ok for the first three days and then by the fourth day I start to drag. I feel real tired for about three days after the seventh day. It is important to keep the shots organized because you start running out of room by the seventh day. I don't use anything for the skin but others have used a skin lotion. I will take tylenol to ease the feeling at night if needed. Also, be sure to take something like Miralax for constipation if taking anti-nausea pills.

DanL Wed Nov 9, 2016 11:13 PM

Emma,

I took my vidaza on 5 consecutive days with the 7 day dose during those 5 days. Example if I was supposed to have 150mg per day for 7 days (total of 1050mg), I would instead have 210mg for 5 days. There are some studies that show different levels of effectiveness for the various regimens in use - 7 consecutive days, 5 days on 2 off, 2 on, and then the 5 day treatment that I had.

The following article gives some information, but there are many more studies than this one.

http://ascopubs.org/doi/full/10.1200/jco.2008.17.1058

I think the bottom line is that all three regimens can work for patients. Bailie is correct in stating that the 7 consecutive day regimen is what was approved by the FDA.

Hope this helps.

bailie Thu Nov 10, 2016 10:20 AM

It is interesting that this is my third period on Vidaza and 22 cycles in total. Not sure if I have heard anyone being on Vidaza for three different periods.

Eva's daughter Fri Nov 11, 2016 07:38 PM

Wow bailie. 22 cycles... It must agree with you then! Mum has had 2 shots so far, she seems to be ok- she says that even though it doesn't look to bad at the site of the injection that it is very tender and painful. She seems very tired but she is used to this feeling because of her low platelets already.

DanL, thanks for your article link. I must say that whilst a little overwhelmed that this is happening to my Mum, I find it all rather interesting. I'm not sure how many grams Mum is on, but I will find out!

When we saw the nurse for the first time, she was amazed at how much I knew about everything thanks to you guys.... Thanks for pointing me in the right direction!

Best to all,

Emma

kyis Fri Dec 2, 2016 09:18 PM

My preference would have been 7 consecutive and would recommend that if you can get it. I started 5 on and no 6 or 7, and lower dose because of low wbc. I was doing so well we then went to full dose 5 on. then to 522 full dose. I think 5 or 522 work just as good, but just my opinion. In either case I responded will to Vidaza. I think there are so many different ways people react. I've heard some people have no symptoms or can't even handle 1st dose. I had all mine in the stomach. I would mark each shot location with a sharpie so I could spread the them out over the 7 days. I would get pretty bruised, raw, peeling and sore. One nurse noted that if I took the shot straight in vs just sub cue I would have less irritation and it worked for me. Maybe I had plenty belly fat.

bailie Fri Dec 2, 2016 09:25 PM

kyis, how were your counts reacting on Vidaza? My platelets bottom out at 10-14 days following treatment at about 50 before rebounding to about 200. My WBCs and neutrophils take a beating and get down to about 2.5 and 0.60 before going up before next treatment. My RBCs seem unaffected at about 3.5.

Also, what is the status of your transplant? Did you have one?

kyis Sat Dec 3, 2016 09:59 PM

Hi Bailie,
Platets were at about 50 and would drop to about 25.
WBC was about 500 and would hang pretty steady, which was my concern that if I was 500 I didn't have much wiggle room. They dropped maybe to 400 a few times. Neutrophils stayed in the tank. I had a few transfusions through my 5 cycles for low hemoglobin. Then off to transplant. Full myloblative. Marrow SCT Sept 1st. I'm at Day 95 and just got back home last week.
Best Wishes to all!

Faye R Wed Feb 1, 2017 10:08 PM

I was on azacitidine it lasted for 13 months my protocol was 2 injections for 7 days however the day unit is not open I had to wait until it was so 5 days on 2 days of the 2 days on. Evening primrose oil was what I used for the injections sites and cold water also helped, I use to have them done one month on my stomach and one month on the thighs I wish your mother all the best.
DX RCMD


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