azacitidine (news)

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janetstanford
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azacitidine (news)

Post by janetstanford » 17 Feb 2011 12:58

just read the news ... great to hear and know so many peples lives will be better for this treatment and SO many will be saved ... a huge thankyou to rodney taylor and those who have helped make this possible :D

THANKYOU janet
Bronte

Re: azacitidine (news)

Post by Bronte » 18 Feb 2011 17:18

I totally agree, this is fantastic news for all patients that require AZA.

A massive THANK YOU to everyone that made this happen.
chris
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Location: Essex
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Re: azacitidine (news)

Post by chris » 21 Feb 2011 12:32

What wonderful news. This drug is used so extensively elsewhere with such favourable results and now finally there is some hope of respite and better quality of life for people who are seriously affected by MDS. May I add my thanks to Sophie, Rodney Taylor, all the MDS medical experts and everybody else who has lobbied and fought so hard for this.
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
haroldhill
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Re: azacitidine (news)

Post by haroldhill » 22 May 2011 20:34

i would like to thank everyone who replied to my questions about azacitidine
treatment. we found the info helpfull and encouraging.
you feel so alone going through this, and to read other peoples stories
really helps
my husband starts his 3rd lot of aza this week.
he has been quite sick and has a sore tounge, and feels very tired.
but reading the comments have helped raise his spirits
thanks again and good luck to all,
harold hill
p.s we live in essex and would like to join a support group
p,p,s not very good at typing!!!
sophie
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Joined: 20 Nov 2008 14:05
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Re: azacitidine (news)

Post by sophie » 23 May 2011 17:21

Hello Haroldhill,
we have a growing community in the the Essex area it seems.
Chris - who is doing a fantastic job at posting messages on here and encouraging people - is keeping in touch with a few of them.
We just added another 4 people - 2 from Sawbridgeworth and Waltham Abbey.
I hope they will use this online forum soon.
If you want to get in touch with Chris, please send her a message on this forum - or call me.

Thanks
MDS UK - Sophie 020 7733 7558
Sophie - Patient Liaison
For any queries:
Call 0207 733 7558
Email mds-uk@mds-foundation.org

Please do not send me PM messages on this forum - I do not check it often.
This forum is purely for patient to patient communications. Thanks for your help.
Bronte

Re: azacitidine (news) / treatment

Post by Bronte » 02 Sep 2011 18:15

Just in case anyone needs this link. Richard Barker currently has an on line blog relating to treatment with Azacitidine, which is very informative.

mds-in-the-family.blogspot.com
dinace1
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Joined: 07 Apr 2011 00:20
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Re: azacitidine (news)

Post by dinace1 » 28 Sep 2011 19:29


Mum has been on Azacitidine for 6 months now, (mum has CMML) The results of her bone marrow tests taken last week show that her blasts have been reduced by 75%, her blood transfusions have drastically decreased and she is actually looking to the future, something she hasn't done for so long.
Mum is smiling again.

Denine
chris
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Joined: 01 Dec 2009 21:52
Location: Essex
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Re: azacitidine (news)

Post by chris » 30 Sep 2011 19:58

Dear Denine

So very good to hear from you again and with such wonderful news. You must be so relieved as your Mum really was very, very poorly a while ago. I think I've seen some of your posts on another Forum ( can't remeber which one!!) so was aware that there were gradual improvements going on. Is she eating well now and re-gaining weight? All credit to you for pushing for the Azacitidine treatment for your Mum. They say that improvements often only kick in after 4-6 cycles so it's obviously worth hanging in there.

Thanks so much for posting this update as this is very encouraging for anybody just starting out on the drug.

Best wishes to you and your Mum

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
dinace1
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Joined: 07 Apr 2011 00:20
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Re: azacitidine (news)

Post by dinace1 » 01 Oct 2011 02:32


Thanks for remembering us Chris, it was over 7 months ago when I started writing on the forums, seems a lifetime ago... 7 months ago I was in dispair but now with mum's good news with the Azacitidine there's a light at the end of the tunnel which isn't an oncoming train.
Mum's weight has stabalised, she's now 6 stone 2, which is not good but at least she's not losing any more, she is eating but doesn't seem to gain any weight. I do believe the weight loss is part of CMML.
The injection sites do cause mum some problems as she has no fat on her. She's full of bruises, bless her.
What worries me though is our specialist told us she would have to continue with the Azacitidine for the rest of her life, but in the USA I have spoken to people who are on the same treatment and they have told me that when the results are good they come off it and if/when the blasts increase they go back on it. Do you know anything about this?
Best wishes
Denine

janetstanford
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Joined: 01 Nov 2010 17:54
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Re: azacitidine (news)

Post by janetstanford » 01 Oct 2011 15:25

Hi
i do remember your posts yes i thought from what i have read that you have 6 cycles then come off it then if needed go back on not heard of this "for life " comment :?: hmmm best to talk to the doctor Google research first (maybe) then go with info i find this helps
...... or maybe give Sophie a call she should be able to advise this may be best

Good luck hope you get the right answer take care and best wishes to your mam :P Janet
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