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  #1  
Old Fri Jun 5, 2015, 07:53 PM
Faye R Faye R is offline
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Location: New Zealand
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Vidaza

Hi I've just completed my 9th round of Azacitidine the nurses mention that in Australia you are having your Vidaza at home, how does this work how can you get the drug from the hospital pharmacy to the house when there is a short life time with the drug and it has to be kept at a certain temp. and who gives you the injection, do you have the right type of clothing to put on etc. Also I was told that they will give it to you in one site, I can understand something like 90mg and under in one needle but 120mg -140mg injected into one site come on, the nurse here in Christchurch was quite sure that this is what the Vidaza nurse from Australia told them is what they are doing I'm thinking this is what they want done here and I'm not happy.
Then I was told that they tried to start this and had to put a holt to it as the complication was to great, can some one enlighten me please.
Had my BMB results back blast down 16% to 5%
Dx 6/12/2011 RCMD 9985/3 changed 19/09/2014 RCMD-RA 16% blasts
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  #2  
Old Fri Jun 5, 2015, 09:25 PM
Annettec Annettec is offline
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Join Date: Feb 2015
Location: New Brunswick Canada
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Hello Faye,
My mother has been on Vidaza since last June ( currently on her 13th) in eastern Canada, and although I have read that they have a trial underway that is pill form, it's not yet available in Canada, so she has to go to hospital for injections. The protocol is very specific so I am assuming that it has to be done by nurses who have the right training for this treatment.

In fact, from my research, we are fortunate that it's available in our province ( New Brunswick) as it's not necessarily the case for the rest of Canada, i am told.

For my mother, Vidaza has been a godsend, it has kept her alive for over a year, with little to no side effects. Great quality of life! ..alas, it would appear the treatment is no longer effective, we were just told last week that her blood work had been going downhill since February. She still feels great so it was a shock... No doubt a bit less energy but otherwise enjoying life to the fullest. Horrible disease....
We're hopeful that she will stabilize again and vidaza will continue to keep her away from AML.... She is obviously high risk MDS...

Anyone out there with words of encouragement with respect to a "second wind" with Vidaza for a 78 year old who is otherwise healthy and full of life?

This forum is also a godsend.....
Annette ( daughter of an amazing mother who deserves a bit more time....)
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  #3  
Old Sat Jun 6, 2015, 12:49 AM
Chirley Chirley is offline
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Join Date: Oct 2007
Location: Logan City Australia
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Sorry Faye, haven't heard of it and I too, don't see how the logistics would work given that a great many people live long distances from the treatment centres and compounding pharmacies.

Maybe someone currently on Vidaza has more up to date knowledge.
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  #4  
Old Sat Jun 6, 2015, 06:22 AM
DanL DanL is offline
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Join Date: Dec 2010
Location: Denver, CO
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home admin of vidaza

a couple of years ago i saw this article:

http://www.mdsbeacon.com/news/2012/0...ents-ash-2011/

Unfortunately, I have not seen any additional articles or trials to move it forward and make it a reality. I am thinking that because vidaza administration is so fast relative to other treatments that the gain in time for the hospitals and clinics may not be enough to justify home administration.

Practically speaking, I think that Vidaza really only has a shelf life of about 2 hours and the docs call it stale after an hour, so I don't know how it would be practical without a medical express delivery service. Who knows?

Dan
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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. No longer experiencing nor treating CGVHD. Working on fixing long-term side effects of AVN in hips and cataracts in eyes. Life is good!
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  #5  
Old Sun Jun 7, 2015, 03:35 AM
Faye R Faye R is offline
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Location: New Zealand
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Thanks for that, will let you know if there is anymore said about it.
Faye
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  #6  
Old Tue Jun 9, 2015, 04:55 PM
riccd2001 riccd2001 is offline
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Location: Burlington,Ontario,Canada
Posts: 186
Cool Better chance of oral Vidaza (Quazar) than home treatments...

Celgene's CT using Quazar continues with fine-tuning of best dose levels.

The QUAZAR® Myelodysplastic Syndromes (MDS) study has been developed to investigate how well a research medicine called CC-486 (Oral Azacitidine) in combination with best supportive care works on lower-risk MDS patients who rely on red blood cell transfusions and have low platelets. The main goals of the study are to see if CC-486 increases red blood cell counts so blood transfusions are not needed and to improve survival. Approximately 386 patients from around the world will participate in this study. To learn more about this trial...

QUAZAR Study for Lower-Risk MDS Patients – A clinical research trial sponsored by Celgene Corporation. This is a study for people with MDS who need blood transfusions due to low red blood cell counts (called anemia) and low platelet counts (called thrombocytopenia). Still recruiting, IF you meet ALL the rigorous qualifications!

https://www.celgeneclinicaltrials.com/quazar-mds
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Ric: Low-risk MDS (blasts <4%); 4 cycles Revlimid no positive response; PRBC transfusion dependent; so far, 392'units' over 8 3/4 years; BMB #4 (15/04/01) shows evolution to AML (blasts 20-30%) 47,XY,del(5) (q22q35),+21[24][cp24]/46,XY(1).
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