NICE appraisal of Revlimid/Lenalidomide

Posts related to the sub-type 5q deletion

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sophie
Posts: 249
Joined: 20 Nov 2008 14:05
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NICE appraisal of Revlimid/Lenalidomide

Post by sophie » 15 May 2013 18:20

Hello all,
VERY IMPORTANT REQUEST
you saw on our website that NICE is about to appraise the drug lenalidomide for all 5q- MDS patients who are transfusion dependent. The appraisal is due to take place 13th June 2013 in Manchester.

We may require your assistance before and/or this appraisal, should we encounter issues of cost-effectiveness for the drug.
We'd like all 5q- patients to add a quick reply to this post.
Please just state:
a) whether you are transfusion dependent or not.
b) if you receive transfusions - how frequently do you have them?
c) who is your MP?
Find it there: http://findyourmp.parliament.uk/

This is truly important as access to this drug on the NHS will depend on the successfull outcome of this appraisal.
We need this information now as to prepare for the initial meeting.
Please respond by end of May at latest.

Thank you so much
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.
christina
Posts: 95
Joined: 07 Mar 2013 11:22
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Re: NICE appraisal of Revlimid/Lenalidomide

Post by christina » 15 May 2013 18:45

Hi I am on Darbepoientin and although on 500 mcg weekly my Hb is 8.5 and I worry that if this goes below 8 I may need a transfusion, this I do not want to happen, i don't want to be transfusion dependant. Christina Fowler
Sarah Reakes
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Joined: 11 Aug 2011 17:51
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Re: NICE appraisal of Revlimid/Lenalidomide

Post by Sarah Reakes » 15 May 2013 23:38

Hi Sophie,

As you know I have MDS with -5q and In answer to your questions:-

a) I was diagnosed in June 2011 and am currently NOT transfusion dependent;
b) Frequency of Transfusions - Not applicable to me;
c) My MP is Liam Fox.

I can confirm that my Specialist has made it quite clear to me that it would be his intention to offer Lenalidomide to me once I become transfusion dependent. Do you wish me to make him aware of this NICE appraisal and ask for his comments, or should he be aware of this anyway through the NHS?

Regards

Sarah
Aged 62. Diagnosed with MDS 5q-, June 2011 & been on Wait and Watch regime On 25/11/14 told disease had progressed to High Risk with 15-20% blasts. Starting Intense Chemotherapy on 20/1/15 prior to SCT. Live in Yatton near Bristol/Clevedon.
christina
Posts: 95
Joined: 07 Mar 2013 11:22
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Re: NICE appraisal of Revlimid/Lenalidomide

Post by christina » 19 May 2013 12:50

Hi Sophie my Hb went down to 7.6 last week even though I am on 500 cg of Darbepoietin weekly so am going to have a transfusion at the end of the month in Worthing, would rather not have it but feeling tired, hopefully on my next visit to Kings next month this will be discussed, regards Christina
sophie
Posts: 249
Joined: 20 Nov 2008 14:05
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Re: NICE appraisal of Revlimid/Lenalidomide

Post by sophie » 22 May 2013 16:02

Dear Christina and Sarah,
thanks for replying regarding the NICE appraisal.

Sarah - yes please do tell your consultant about the NICE appraisal - he may not be aware of all the details yet.
But he needs to know that approval may not be straight forward.
This is why we need the help of all MP's of 5q- patients.
We will contact yours - Liam Fox in the near future. Thanks for sending this through!

Christina - can you confirm you are a 5q- patient?
If you are - please post the answer of the 3 questions I posted in my initial message.
To post a reply - please click on "Post a reply" (not Quote)
All messages in this particular folder will relate to the NICE appraisal of lenalidomide/Revlimid.
In order not to mix up subjects, I will post a reply to your other concerns in the Transfusion and Iron Overload folder.

If there are any other 5q- patients using this forum - please post the answers to our 3 questions asap.
This will be extremely important to help gain approval for lenalidomide for NHS use.
It took 2 years to get azacitidine - we do not want to wait again as long as that to have lenalidomide approved.
Thanks all.
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.
meerkat
Posts: 15
Joined: 09 May 2009 13:41

Re: NICE appraisal of Revlimid/Lenalidomide

Post by meerkat » 22 May 2013 18:48

Hello Sophie. I have 5Q-, diagnosed in 2007.

I became transfusion dependent in Jan 2008, needing 3 units every 8-10 weeks. I have been transfusion free since May 2010, following chelation therapy with desferrioxamine. I haven't had any lenalidamide.

My MP is Hugh Bayley

Best wishes

Meerkat
Sarah Reakes
Posts: 76
Joined: 11 Aug 2011 17:51
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Re: NICE appraisal of Revlimid/Lenalidomide

Post by Sarah Reakes » 23 May 2013 22:59

Hi Sophie,

Thanks for your reply. Yes, just after posting to you, I did take the initiative and contact my Consultant's Secretary and asked her to alert him to the NICE appraisal of Lenalidomide on 13th June and I did make her aware of the link to the MDS UK Patient Support Group so that she could see what I was talking about, so hopefully he will be taking an active interest in this debate as it is a drug that he endorses using.

Regards

Sarah
Aged 62. Diagnosed with MDS 5q-, June 2011 & been on Wait and Watch regime On 25/11/14 told disease had progressed to High Risk with 15-20% blasts. Starting Intense Chemotherapy on 20/1/15 prior to SCT. Live in Yatton near Bristol/Clevedon.
christina
Posts: 95
Joined: 07 Mar 2013 11:22
Contact:

Re: NICE appraisal of Revlimid/Lenalidomide

Post by christina » 27 May 2013 18:29

Hi Sophie, No I am MDS/RARS, sorry not very up on all the medical side of things, I just know that I am having to have a transfusion on friday as am down to 7.6, hopefully will have more info when I return to Kings next month, regards Christina
edmcd

Re: NICE appraisal of Revlimid/Lenalidomide

Post by edmcd » 03 Jun 2013 15:58

Hi Sophie

I hope this reply is not too late.

a) I was diagnosed 5q- 6 years ago and have been transfusion dependent for 3 years.

b) I require transfusions approx every 8 weeks.

c) My MP is Ian Paisley

Regards
Ed McDonnell
Ballymena
WrightM&G

Re: NICE appraisal of Revlimid/Lenalidomide

Post by WrightM&G » 14 Jun 2013 19:39

I was diagnosed nearly 2 years ago and started my 3rd cycle of Revlimid last week. Before that I needed transfusion at about monthly intervals but have had none since starting the drug i.e. about 8-9 weeks.

My MP is Bob Stewart, who is most approachable although I have not spoken to him myself.

Gerlinde
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