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  #1  
Old Wed Nov 9, 2016, 07:04 PM
Eva's daughter Eva's daughter is offline
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Location: Perth, Australia
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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
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  #2  
Old Wed Nov 9, 2016, 09:47 PM
bailie bailie is offline
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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.
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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Old Wed Nov 9, 2016, 11:13 PM
DanL DanL is offline
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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.
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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Old Thu Nov 10, 2016, 10:20 AM
bailie bailie is offline
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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.
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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  #5  
Old Fri Nov 11, 2016, 07:38 PM
Eva's daughter Eva's daughter is offline
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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
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  #6  
Old Fri Dec 2, 2016, 09:18 PM
kyis kyis is offline
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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.
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Male 56, MDS 2008, pre SCT Hypocellular 5-30%, Normal Cytogenetics. WBC 500, anc 45, Blasts 15%, Platelets 45, HGB 7, RBCC 1.71, HCT 20.5, MCV 120. Became Transfusion dependent 3/2016. 5 cycles VIdaza started 3/14/16 which reduced Blast counts. . Marrow Transplant 9/1/16, Hereditary MDS/AML.
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  #7  
Old Fri Dec 2, 2016, 09:25 PM
bailie bailie is offline
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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?
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.

Last edited by bailie : Sat Dec 3, 2016 at 10:31 AM.
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  #8  
Old Sat Dec 3, 2016, 09:59 PM
kyis kyis is offline
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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!
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Male 56, MDS 2008, pre SCT Hypocellular 5-30%, Normal Cytogenetics. WBC 500, anc 45, Blasts 15%, Platelets 45, HGB 7, RBCC 1.71, HCT 20.5, MCV 120. Became Transfusion dependent 3/2016. 5 cycles VIdaza started 3/14/16 which reduced Blast counts. . Marrow Transplant 9/1/16, Hereditary MDS/AML.
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  #9  
Old Wed Feb 1, 2017, 10:08 PM
Faye R Faye R is offline
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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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