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

[david]

Hi Karen

Sorry to hear about your dad but hopefully Vidaza will put him in remission as it has me. There are reports of some patients having long term benefits and if you follow Google alerts there seem to be new treatments coming along so keep positive.

Problem number one with Vidaza is just how much time it takes out of your life travelling backwards and forwards to hospital 7 days out of 28 for treatment plus blood tests and Clinics - doesn't leave much time for anything else and comes to dominate your life.

The treatment itself is just 2 quick injections and I have generally found them reasonably tolerable -just some redness and a little tenderness around the injection sites and a day or two of weariness and feeling a little under the weather. Other people I have met seem to sail through the treatment and then are able to live fairly normal lives between courses.

My problem is with breathlessness which is having a major limiting effect on my ability to do much at all. Initially was due to anaemia but has slowly worsened even though blood counts have recovered which puzzles my Consultant and  I am currently having a battery of tests to see if there is something else going on. I would be most interested to hear if anyone else is finding breathlessness a significant problem.

Out of all that - Vidaza is a demanding schedule but not too bad a treatment for side effects so hopefully your dad will feel well enough to work but only if he can find the time.

Wish him well

David

[Karen]

Hello David

Thanks for you for your response - it's always good to hear from someone who has been through the experience, although I do know that it can be different for each person. I'm sorry to hear about the breathlessness - I hope that your doctors get to the bottom of it.

It's Dad's last year of work so I think that his employers will probably be suportive of his need for time off. Can I ask, do you get a break between cycles, or is it a permenent regime of treatment and tests? Has the quality of life improvement been worth it in your opinion?

Karen x

[david]

Hi Karen

A most definite Yes

Before Vidaza I was dependent on increasingly frequent transfusions and since have been free of them fo some 15 months. The breathlessness is limiting but I can generally get on with life at a slow pace and am somewhat restricted in physical activities.

There were initially funding problems with Vidaza but so far as am aware are no longer a problem and treatment continues in 4 week cycles for as long as it is felt to be the right treatment.

The cycles have been stretched from time to time to fit round bank holidays and our own holidays - my Doctor is generally supportive of my view that so far as possible treatments should fit in with life and not the other way.

So your dad will have to adapt to new routines and keep positive but hopefully will benefit as I have

Best wishes

David

[david]

Hi everybody 

An update after clinic yesterday which was most encouraging.

Latest test results are all showing continued remission. Blasts were <5%, blood film ok and also genetics with defective chromosome P3 appearing ok now.

So am starting Vidaza cycle 20 on Monday with the next 2 then provisionally set at 6 week intervals to fit round hols and bank hols. Dr is reviewing whether 6 weeks could be the norm rather than 4 weekly cycles which are very demanding.

But must not complain - I'm so grateful that I did get Vidaza after the initial struggle and that I am fortunate that it has worked so well for me so far. Dr did say that if in due course it becomes less effective there are new treatments coming along.

So we are getting on with life as best we can - taking frequent UK hols and booking well in advance to get our choice of accommodation accepting that we may eventually have to cancel.

We all know that with MDS the future is somewhat uncertain but to everyone, keep spirits up, keep fighting and best wishes to you all.

David

[janetstanford]

David
So pleased for you things all looking good
Take care Janet

[Sarah Reakes]

Hi David,

I haven't posted to you before but felt compelled to write just to say how wonderful to read your message and that you have stabilised so well on your treatment.

It's so good to read encouraging postings.

Wishing you all the very best.

Sarah

[chris]

Hi David

Great news for you. Rodney Taylor, MDS Chairman, has been on Aza since 2009 and is doing so well. I was chatting to him the other week and he has moved to a maintenance dose so the schedule is not so intrusive on "normal" life!! Hopefully, you will be on that soon and you can do more of the things you enjoy without fear of having to cancel plans.

Thanks for updating us all and keep well.

Chris

[david]

My last posting was upbeat about the success of my treatment with Azacitidine so members of the forum will understand my feelings when I read the following feed from Google Alerts earlier today.

MDS UK note: The following quote is an error based on an unreliable spam site - quoting an old statement from 2010.
The following info is NOT accurate:

"NICE appraisal of azacitidine for myelodysplastic syndromes
adminAugust 17, 2012pharmacyLeave a comment (0)
‘We are disappointed not to be able to recommend this drug. The independent evaluation committee has estimated that all published data on the effectiveness of azacitidine and the cost, including the proposed’ patient access scheme. ‘The evaluation committee concluded that compared to the benefits, the price you need the NHS to pay for azacitidine, is still too high to be recommended as an efficient use of NHS resources.Dr Carole Longson, Health Technology Evaluation Centre Director of NICE, said: ‘Azacitidine is the first drug that was developed specifically for the treatment of myelodysplastic syndromes This is not a cure, but it could extend the life of people with these conditions for about nine months longer. than the standard treatment."

The slightest suggestion that MDS patients may have difficulty accessing Azacitidine is a frightening prospect . I am due in clinic in a couple of weeks with the next course of treatment provisionally set for the following week and will post any news.

In the meantime I would appreciate any feedback if other members have any news.

Best wishes to all

David
MDS UK note:
Dear all - the google alert referred to in this post is based on a spam message on an unreliable blog. Unfortunately, this was picked up by Google alert and posted to David, who assumed it was a genuine piece of News. I have posted a disclaimer in the next message - as well as a request to be extra vigilant when posting and quoting some sources. Please ALWAYS check with us as the internet is absolutely full of unreliable information. Thank you

[janetstanford]

David
i have no news for you just opinions how shocking and upsetting this fight has been going on since 2008 and that is just what i remember how awful for you and so many others aza is certainly a life line
i guess dotors will either prescribe and justify or people will have to try an tap into the cancer drug fund
maybe a chat with sophie may give some answers and a direction and as Rodney Taylor is on the drug maybe just maybe they know of a an easier way to access
Good luck
Janet

MDS UK note: Janet - please see our disclaimer - the info relates to an old statement from 2010 - which was used as spam on an unreliable blog. (Sophie - 22/08/2012)

[Sophie]

IMPORTANT

Dear all - and dear David,

the google alert you refer to in your post is related to a spam posting on a very unreliable looking blog entry called Ruff Reggae.

There is absolutely NO CHANGE on the part of NICE to alter any of the guidance about azacitidine.

SERIOUS REQUEST TO ALL FORUM USERS
I'd like to please ask anyone posting on our forum to be extra careful and always check your sources BEFORE posting anything.
Always check with us before posting anything you are unsure of.
You can call or email us any time.

This will prevent a lot of misinformation which then quickly spreads on forums like this and causes a lot of unnecessary concern.

David, I will delete your post later today - as there is no reason to leave it on the forum - it will only worry others.
I'll leave a quick message to ask people to take extra care when posting from strange looking sources.
Spam takes many different shapes and forms these days unfortunately and we need to be extra vigilant.

Hope this will put your mind at rest as well David and we are very glad that you are doing so well on the drug.
All the best
Sophie