MDS meds delay

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artistanne
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Joined: 17 May 2013 11:27
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MDS meds delay

Post by artistanne » 14 Jun 2013 09:19

Please can anyone help

Was due to start revilimid this week. My hospital just phoned and said they carnt give me it yet as their application for the medicine has not yet been approved. I thought this medication was now freely available, is this normal proceedure.
Sarah Reakes
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Joined: 11 Aug 2011 17:51
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Re: MDS meds delay

Post by Sarah Reakes » 14 Jun 2013 17:02

Hi Artistanne,

I have just returned from holiday today and was sorry to read that your Hospital has stopped you starting treatment on Revlimd. However, if you read on it may explain why this has happened.

Please refer to Sophie's posting of "NICE Appraisal of Revlimid/Lenalidomide" on 15th May under the "5q- & Lenalidomide Topic", where she was asking for all patients with 5q- to come forward with details of their condition, whether they were blood transfusion dependent or not, and the name of their MP, in time for the NICE Appraisal into the efficacy and cost effectiveness of this drug, which was due to be heard yesterday 13th June 2013.

I assume that until this NICE appraisal has been deliberated and hopefully a positive decision made, then Revlimid will not be freely available within the NHS. I think up to now it has been used within Clinical Trials only where it can be used without it having been given final approval/licensing for widespread use within the NHS.

Following Sophie's posting, I alerted my Haematologist to this NICE Appraisal in the hope that he would be able to give some positive influence as I know he is a supporter of the drug. I think we are all very concerned to know what the outcome will be!

In the meantime, I suggest that you contact Sophie, Patient Liaison, who will be able to put you in the picture better than I can.

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.
Sarah Reakes
Posts: 76
Joined: 11 Aug 2011 17:51
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Re: MDS meds delay

Post by Sarah Reakes » 18 Jun 2013 18:29

Hi Artistanne,

I haven't had a reply from you so I don't know if you have spoken with Sophie or not and whether you are up to speed on this subject.

If you haven't, l just wanted to make you aware that Sophie has posted today 18th June, an update on this subject under the "5q- & Lenalidomide" topic I have already given you which is specific to our particular form of MDS. Please read this as it will help you to understand the interim funding arrangement that can be followed within the NHS for the use of Revlimid until a final decision is made which is now expected mid to end July. If you have already spoken to Sophie, then that's great but if you could post a response to say so then that will help me to know if you need any more assistance with your particular query.

Also can I suggest that you post all queries relevant to our form of MDS, under the "5q- & Lenalidomide" Topic as you seem to have posted under 'Say Hello and General Messages' and 'My Experiences' and it can get terribly confusing when messages are bobbing up in different places from the same person when they are all inter-related.

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.
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