[KWilsonParticipant]

Hi

I asked my consultant about this when I saw her and she said it seems it will be a couple of years before it is available for general prescription.

Has anyone on here got it outside of trials and if so, how did you manage it? My Revlimid isn't doing the job now so any alternative is worth a try in my book.

Thanks in advance.

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[GayeParticipant]

Dear Kath – As far as I know there are two of us on this board who are having pomalidomide – mine acquired from the drugs company under special circumstances. It is not part of a 3rd stage clinical trial which I believe is due to start in various hospitals around Easter. Your doctor should be able to find out where but it may not necessarily be your hospital. Kath – nothing ventured, nothing gained. Ellen our nurse may be able to help you here in locating where the trial is taking place so my advice Kath is to go for it. We just have to keep on trying and fighting.

Good luck and if I can help I will certainly do my best.

Love, Gaye xx

[adminKeymaster]

Is it a very good treatment? Should we all be interested in what it can do for us? Do you have any information? It sounds like a Thalidomide analogue – is it?

[KWilsonParticipant]

Thanks Gaye – I'll check that out.

Yes Nigel, you should be interested. It's a further development after the Lenalidomide (Revlimid) but not yet available in the UK. This, along with another drug, Bendamustine, are 'in the pipeline' altho' my consultant says that, for me, the Pomolidomide holds most promise now that my Revlimid is losing it's effectiveness.

I'm not sure if there's any info on this site about either of them but if you search the info leaflets and info pages, you'll find anything that's currant on here; or, ring one of the nurses who will have the up to date information.

HTH

xxxx

[GayeParticipant]

Dear Nigel – I will be starting my 3rd cycle next week having acquired it under 'special circumstances' . I would say be interested but not too interested at this stage as it still has to go through its third stage clinical trial, get its European licence and then no doubt go through the NICE torture before it hopefully will become generally available. As a drug yes – I know it is not going to cure me but I hope it will give me a quality in the life I hope I still have left.

I normally interrogate my docs to find out what's coming up in the future and as it is a trials and teaching centre they are usually well up to speed with upcoming novel drugs. I don't know how this will fare for me but I just felt I had to go for it. Life is still to precious.

Love to you all, Gaye xx

PS It's in tablet form and is part of the 'lidomide' group ie thalidomide and lenalidomide(revlamid). It seems effective and has had some good results in the US.

[TinaParticipant]

Hi Kath,

Yes, both Gaye and my husband Patrick are currently using Pomalidomide. Patrick too was allowed it under special circumstances and has recently finished his first cycle. If you have read any of my past posts you will see that Patrick had a successful year on Bendamustine, which is not a new drug, without side effects, before it stopped being effective.(Revlimid was only effective for approx four months) Bendamustine is given intravenously taking about half an hour each time.
Good luck

Tina

[Author]

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