David - an update after a year of Vidaza (Azacitidine)

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david
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David - an update after a year of Vidaza (Azacitidine)

Post by david » 18 Dec 2011 10:50

Hello again everybody - It's some time since my last posting when I was cautiously optimistic about my treatment.

I have just finished my 13th course and am in good remission. Blood counts significantly improved and stable and 'blasts' which before treatment had risen to 8% have dropped back to 2%. Neither have I needed any blood transfusions since January after some 20+ in 2010. That must have saved the NHS quite a bit to offset against the cost of Vidaza.

The schedule can be a bit demanding with 7 days of treatment per cycle plus clinics, blood tests and bone marrow biopsies adding up to some 100 visits over the year. But with some flexibility in the cycles over 4/5 weeks we have managed to get away several times on UK holidays and short breaks.

There are side effects to the treatment but after the first 3 cycles they have been reasonably tolerable. There was just one cycle in September which was particularly bad to the point that I was unable to complete the treatment but I have been OK since.

Overall I am very lucky that the treatment has worked for me and the price in frequency of hospital visits and side effects is small compared to the big improvement in quality of life it has given me. I do not know how long I will continue in remission but my consultant encourages me that new treatments (unspecified) are coming along in that event.

None of us know what is round the next corner -we just have to try and make the best of the hand we have been dealt. I should say though that when I was first diagnosed I had some difficulty coming to terms with it but a few sessions with a Macmillan counsellor did help ease my mind.

I hope my account helps those of you who are about to start treatment or are finding it hard going.

Best wishes to all for Xmas and the New Year.

David
janetstanford
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Re: David - an update after a year of Vidaza (Azacitidine)

Post by janetstanford » 18 Dec 2011 22:16

Hello David

i am so pleased to read your good news so glad the treatment has worked for you :) and i am impressed 100 visits to the hospital and regular bi-ops how brave i do admire you
as you know we are all different and can react to the same drug in different ways good to hear the positive and new drugs i do hope so i am low risk so i do not have treatment as such just this "active monitoring" as Chris would say and blood transfusions i have approx 13 a year which pales to your 20 i have 2 units for 3 then i have 3 units every 4th i have concluded this is due to the age of blood cell ect :? ......Going back to the 20 i think your doctor is generous mine keeps saying can you last a bit longer and yet from what i have learnt from others on the site every 3/4 weeks seems average and 2/3 units seems to be average amount :!:
cost totally agree i read some where that it cost the NHS approx 100k a year to treat me and yet the cost of vidaza at the time was approx 30k :o what a huge difference and such a waste of money which could be put to much better use i really wish they would sort themselves out ....oops about to have a rant must stop
please tell what meds did take you take for iron overload

any way will leave you in peace hope to hear from you soon :) and just 1 more thing a message for Chris " Guess i must be back ;) "
Take care Janet :D
Jayne
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Re: David - an update after a year of Vidaza (Azacitidine)

Post by Jayne » 20 Dec 2011 11:58

Hi David

That is good news and I am really pleased you have posted about a positive treatment. It's good to hear Vidaza is working for you and even more encouraging about the future treatments.

I hope you have a lovely Christmas and that 2012 continues to see an improvement for you. Hooray!

Take care, and Janet....it's good to see you back!

Jayne
Jayne
Feb 2011 MDS RCMD. Jan 2012 RAEB.
Feb 2012 - 2 lots of chemo each 4-6 weeks in hospital to destroy leukaemic cells resulting in remission from AML.
July 6 2012 - Stem cell transplant
Doing very well, feel great
Age 43.
chris
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Re: David - an update after a year of Vidaza (Azacitidine)

Post by chris » 21 Dec 2011 20:29

Hi David

That is such wonderful news and thanks so much for posting it as it will be so encouraging to anybody considering this treatment. Also interested to hear of counselling you received from a Macmillan counsellor as that was a service I wasn't aware of and it might help others recently diagnosed.

Yes, I expect the treatment must be quite restricting but the main thing is that you are well and not receiving transfusions - and you've managed some short breaks away too so all good.

Keep well and all the best for 2012.

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
david
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Joined: 19 Nov 2010 15:58
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Re: David - an update after a year of Vidaza (Azacitidine)

Post by david » 22 Dec 2011 15:30

Hi Janet, Jayne and Chris - thanks for you messages.

I did post something back to you Janet but I tagged it on to one of your postings which think is wrong - it should be here I think.

I'm a novice when it comes to forums so it's one of my challenges for 2012 - then text messaging and tweeting!

Macmillan counselling was not volunteered. Clinics are busy and focused on the physical symptoms and treatments but I felt to be in a bit of a dark place and asked about counselling and was referred. It does seem to me that keeping the mind positive and at ease is half the battle.

Anyway lets enjoy the festive season and best wishes to you all.

David
David
Age 75 West Yorkshire
Diagnosed Nov 09 - RCMD since progressed to RAEB but now in remission following treatment with Azacitidine
chris
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Location: Essex
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Re: David - an update after a year of Vidaza (Azacitidine)

Post by chris » 24 Dec 2011 14:43

Hi David

Absolutely - couldn't agree more about the mental state being a good half of the battle! I have a friend in France who is sadly battling an aggressive sarcoma and there they offer counselling free from their state health service as a matter of course. As well as free taxis to and from hospital treatments and appointments, home help and payments to cover loss of earnings!! It's a shame you had to seek it out as I guess most people wouldn't as mental health issues are I think still somewhat taboo and we are expected to be brave soldiers, stiff upper lip and be positive - not always an easy call when you have received a difficult diagnosis and are floundering for information and solutions.

Well, the texting and tweeting challenges should keep you occupied in the New Year I think!!

Thanks again for posting. Keep well and have a lovely Christmas.

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
chris
Posts: 601
Joined: 01 Dec 2009 21:52
Location: Essex
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Re: David - an update after a year of Vidaza (Azacitidine)

Post by chris » 21 Jan 2012 12:16

Hi Benjamin and David

This is so great to hear how effective Azacitidine is being for you and anecdotally for others I have met through the MDS Forum meetings. When NICE were considering funding it, all the focus was on it being an end of life treatment and therefore for short-term quality of life use. However, reading info from the States, it seems that it is something which can have quite long-term benefits all the time the patient stays on the drug. There seem to be people in the States who have been on it for a number of years who are still deriving benefit in terms of reduced or no transfusions.

It is giving out such a hopeful message so thanks very much for letting us all know.

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
david
Posts: 20
Joined: 19 Nov 2010 15:58
Contact:

Re: David - an update after a year of Vidaza (Azacitidine)

Post by david » 22 Jan 2012 15:02

Hi Benjamin and Chris

Thanks for your messages - good to hear from someone who is also benefitting from Vidaza. The grapevine tells me that of the 7/8 patients locally who were on Vidaza last year I am the only one with significant benefit though I believe the national average is more like 40%.

I have been regarding it as an end of life treatment and trying to make the most of each day so it was particularly encouraging to read Chris's news that some patients are getting long term benefit.

I am due to star cycle 15 in a week's time and fingers crossed for many more.

Best wishes

David
David
Age 75 West Yorkshire
Diagnosed Nov 09 - RCMD since progressed to RAEB but now in remission following treatment with Azacitidine
Jayne
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Joined: 16 May 2011 11:33
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Re: David - an update after a year of Vidaza (Azacitidine)

Post by Jayne » 22 Jan 2012 20:31

David, it really is wonderful the benefit you are getting. I wouldn't look on it as an end of life treatment, think positive that you will be here for many years yet!!

I notice you are in West Yorkshire. Do you go to St James and see Professor Bowen? That is where I am being treated. I think Prof Bowen is fantastic and I have total faith in him.

I live between York and Selby - where are you?

Anyway good luck with your next round.

Jayne x
Jayne
Feb 2011 MDS RCMD. Jan 2012 RAEB.
Feb 2012 - 2 lots of chemo each 4-6 weeks in hospital to destroy leukaemic cells resulting in remission from AML.
July 6 2012 - Stem cell transplant
Doing very well, feel great
Age 43.
Karen

Re: David - an update after a year of Vidaza (Azacitidine)

Post by Karen » 16 Apr 2012 10:47

Hello David

I've been reading your thread with interest.

My father's most recent biopsy also showed an increase of blasts to 8%, and his specialists are putting him on a course of Vidaza commencing in a few weeks. However, at previous appointments there was also disucssion of a BMT, so I'm confused as to why he is being put on Vidaza if a BMT is an option.

What I want to ask you though is if you have any tips for getting through the treatment, and how debilitating you found it. Dad is still working and I think that he'd like to continue as much as possible - however, we don't know what impact the treatment is going to make.

Any advice/experiences that you could share would be very much appreciated.

Regards

Karen x
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