azacitidine (news)

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dinace1
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Re: azacitidine (news)

Post by dinace1 » 03 Oct 2011 16:20

That's what I thought too.
I'll keep researching and the next appointment we have with the specialist I'll try and get some answers.
Thanks for your help
Denine
chris
Posts: 630
Joined: 01 Dec 2009 21:52
Location: Essex
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Re: azacitidine (news)

Post by chris » 05 Oct 2011 22:38

Hi Denine

I recently listened to one of the webinars on the AA& MDSIF site. The guy who spoke (Dr Mikael Sekkeres) seemed to be saying that he would leave a patient on a drug while it was still working and quoted the case of somebody who had been really well on Azacitidine for 17 years (or was that 17 cycles - not even sure the drug has been around for 17 years?!?!). It might be archived on that site now - I think it was broadcast in the summer - July/ August. However, this is the States with health insurance footing the bills and the access to drugs is different in the UK. Sophie might know what the NICE guidelines are regarding how long a patient can stay on Azacitidine? Cost will be a big factor I'm sure but I'm sure Sophie would wish to know if it seems that there are limitations as this is something that MDS Patient Forum may wish to lobby NICE/NHS about?

Hope the news from the consultant's appointmnet is positive and so glad to hear of such a good outcome.

Best wishes

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
Posts: 18
Joined: 07 Apr 2011 00:20
Contact:

Re: azacitidine (news)

Post by dinace1 » 05 Oct 2011 23:45

Thanks Chris
I'll see if I can find any info about Dr Mikael Sekkeres. would you know how I message sophie?

Thanks again.

Denine
janetstanford
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Re: azacitidine (news)

Post by janetstanford » 06 Oct 2011 09:04

HI
You can private message her should you wish see members list or telephone ....Janet :)
chris
Posts: 630
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: azacitidine (news)

Post by chris » 07 Oct 2011 17:19

Hi Denine

I have found the link to the webinar I told you about. See below. It is called "To treat or not to treat:treatment decisions in MDS" and was broadcast on 1st September 2011. Worth sticking with it and listening to all the patients' questions at the end too as this is where questions are asked about how long to stay on particular drugs. Hope this helps.

Sophie's details also on the "contact us" bit of this site I think.

Best wishes

Chris


https://live.blueskybroadcast.com/bsb/c ... 1&CAT=1425
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
Posts: 18
Joined: 07 Apr 2011 00:20
Contact:

Re: azacitidine (news)

Post by dinace1 » 08 Oct 2011 18:13

Thanks Chris, I'm having trouble with my flash player, it wont open up the movie file.. so as yet I haven't been able to watch it.
I have emailed sophie but as yet have had no reply.
Thanks again
Denine
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