[DaiCroParticipant]

[quote]RE: Has anyone started on pomalidomide (pomalyst) ?

(Mothas)
25-06-2013 at 10:03 AM
Dawn that's very interesting, are you on a trial, as far as I was aware NICE hasn't given the go-ahead for this treatment yet.
Reply

(dawnwatts)
RE: Has anyone started on pomalidomide (pomalyst) ?

26-06-2013 at 11:17 PM
Hiya no not on a trial paying for bupa got it privately arranged by Gareth Morgan – Marsden
Reply

(DaiCro)
RE: Has anyone started on pomalidomide (pomalyst) ?

25-06-2013 at 12:00 PM
Hi Dawn,

I was/am a great advocate of Pomalidomide/Pomalyst and I am greatly surprised to see someone in the UK already reaping its benefits. I can only surmise that you are part of a very small trial as Pomalyst's other breakthrough drug Kyprolis, was licensed by the American Food & Drugs Agency (FDA) last July and is only now going through the trials set by its European equivalent.

Pomalyst was only licensed by the FDA in January this year… so I don't expect full trials of Pomalyst in the UK until much later this year. (As part of the European arm of testing – you would expect that the full force of American testing and the strict and very thorough approval of its FDA to be enough for us… but it isn't).

The last new Myeloma drug before Pomalyst and Kyprolis was Revlimid in 1996… so these new drugs are extremely important to our generation and those that follow.

Count yourself treble blessed and please keep us informed of you progress.

I wish you every success.

Dai.[/quote]

Hi All,

The above quotes come from a thread started by Dawn a few weeks ago (24th June ish).

First and foremost, regardless of how and where the drugs were come by I wish Dawn the best of good fortune with Pomalyst and I hope her medics find her a proper and potent combination of drugs, alongside Pomalyst. 🙂

I truly hope that this combination will give her a long time of efficacious treatment with a decent quality of life. 😎

[b]That being said… the actuality of a newly licensed drug – Pomalyst – licensed by the American FDA – 'Food & Drugs Agency' in January of this year… which has yet to undergo any form of trialling or testing in Europe or the UK… and which is denied to any UK MM patients, undergoing treatment under the auspices of the National Health scheme… can be purchased through private healthcare schemes by means of the recommendation of a NHS Consultant, many, many, months before it is trialled or tested in the UK.[/b] :-S

I must admit that the idea of the usual format of trials and testings being undercut by financial shortcuts and recommendations from NHS Consultants to the private health sector, made me feel incredibly uneasy. 🙁

The short term implications seem to be that newly licensed drugs from one country, can be purchased freely by private health care providers in another country, on the basis of willingness to pay the set price. These drugs may not become available to NHS patients for many months… [b]and then[/b] only if they fit certain criteria. But those willing and able to pay the going price will be able to access these drugs on the recommendation of their Consultant [b]regardless of criteria[/b]. :-/

I can feel a bit of a battle coming on. I ask sincerely of any of you that can see flaws in my understanding to please let me know before I set my pen and my tongue loose on those who could/should answer my queries. 😐

[b]I believe that this particular case is a true matter of life or death.[/b] >:-(

If a NHS consultant can recommend a drug through private health care that may give or extend life then it should be available to all equivalent patients, regardless of their ability to pay for such drugs. If these patients may have their lives curtailed by the lack of such drugs while their private health care compatriots live, then it is most certainly 'a matter of life or death'. 😛

Of course, this argument does not start with life or death… although it certainly leads to that premise. This argument starts with the premise in bold above: 😐

Yours with an itch that needs scratching. :-0

Dai.

[Anonymous]

Hi Di

This isn't exactly what you are referring to, but it's sort of related, as it is a trial treatment.

My PP has now gone up to just under 40gl, the HGB? has started to drop, so I'm becoming Anaemic and I'll shortly be having the dreaded BMB in a few weeks.

My consultant at Bart's asked me if I wished to be considered for a trial, so keeping my options open, I've agreed.

The treatment will consist of a minimum of 6 cycles, and possibly go up to 16 cycles, with each cycle of treatment being 21 days each.

It will consist of, panobinostat, Velcade, thalidomide and
dexamethason, with the trial drug being panobinostat.

I can't say that I'm looking forward to a possible 48 weeks of treatment, but that verses another STC, hmmm, not sure which is worse, lol.

Terry

[mhnevillParticipant]

Hi Terry

Interested in your post. That sounds like a lot of drugs. All best wishes.I am so grateful to all of you who go on Trials.

Very best wishes.

Mavis

[mhnevillParticipant]

Hi Dai

In response to your Post I must say that I have always found it hard to understand why each country has to do its own Trail. In this cross country sharing why can't we accept one another's research? I suspect this is down to money, but maybe I am being cynical.

I do think when folk like you are running out of options these novel drugs should be available and that should e the Trial. Isn't there a special pot of money for this? If not there should be.

One way we could lobby could be via the 38 Degrees web site and put up a petition.

Best wishes.

Mavis

[dickbParticipant]

I think it is important that we do our own trials here rather than accept the trial data from other countires such as the USA. There have been incidences where drug testing was highly influenced by the drug companies and the data was not fully available or skewered. To save costs we should really form a European licencing agency. I say this because yhere are far more people in Europe therefore a larger group can be tested, the costs of testing can be split between member countries and there is a higher and more rigorous standard of certification in some countries compared to others. Ultimately, we have to accept that there isn't a wonder drug that can trat MM at the moment and it could be some time before there is, to rush through something because it's almost there may cause a lot of pain and discomfort for some. Tholidomide is a case in point where the drug wasn't properly tested before being used for other purposes, 'off label' I think it is called. I do not want to have something without data being available from a known and trusted source either in the UK or Europe where we known testing is rigorous and independent,

[Author]

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