[pjollopParticipant]

Hi, I am posting this link to a recording of a web broadcast by dr James Berenson. He is a leading expert on Myeloma in the USA but takes a different approach of 'less is more'

He stopped doing Stem Cell transplants some time ago claiming that they were too rough on the patient, and says that he can get the same results with better quality of life by [u]creatively[/u] using currently available drugs.

I think this is an interesting and vital discussion that we need to have…less is more? or more is best. (The intro is about 3 mins long if you want to skip it)

http://trialx.com/curetalk/2012/11/let-people-live-their-lives-listen-to-dr-berenson-on-myeloma-treatment-without-transplant-cure-panel-talk-show-broadcast/

[jmsmythParticipant]

Hi Peter

Not sure if I am thick or what. Clicked on the link and it brought me into the site but can find no link to play the recording. I am very interested to hear it as Frank is going for SCT. Any guidance how to listen

Thanks
Jean

[MothasParticipant]

Thanks for posting, I've read around this subject before. I think we need a lot more research before we can be certain and it's always difficult commenting on these issues from a non-expert point of view.

Certainly for some sections of patients SCT is a very effective treatment, but hopefully in the future such will be the efficacy of the combo therapies – the novel approaches, that it become something that's superceded.

I'm facing an SCT in the new year with some trepidation.

tom

[pjollopParticipant]

Hi, The page is a bit slow to load but when it does…there is a big green logo saying 'Cure panel Talk' with a picture of Doc Berenson. …a bit of writing under that then an oblong box labelled "blogtalkradio. In the middle of that box there is a white bit – and on the left side of that is a right pointing arrow 'play' symbol. the intro (by an asian woman is a little indistinct but doesn't contain any vital info. After that 3 mins or so (you can skip it by clicking on the progress bar if you wish) the sound quality improves.
enjoy!
Peter Gore

[pjollopParticipant]

Yes Tom I agree. But to a great extent our treatment is decided by N.I.C.E whereas in the States the insurance companies fund the drugs in the doses and combinations that the individual consultants want to use.

On the subject of SCT, I took the view that 1 month of severe discomfort was a fair price to pay for the 2 years (average) of quality life on little or no medication. (Everyone is different but I am still in Complete Remission 3 years after mine)

But I do sense a change in the attitude of some consultants who are now also taking into account side effects and quality of life – and I posted the link to promote the idea that maybe we should at least look at the alternative of using less medication (possibly for longer) if that can be shown to have similar results, and consider alternatives to those treatments which have the most severe effects on the body.

Good luck with your sct, It certainly worked for me !

[MothasParticipant]

Thanks Peter it's good to here you've had a good response.

I totally agree we should be open-minded about different ways to wrestle with the beast.

[mhnevillParticipant]

Hi Peter

Thanks for the post. I shall look forward to hearing the link when the lounge is Christmas preparations free! Gordon has just put the first forty lights on our tree!!

I am always interested in what Dr Berenson has to say on this subject. I am one of the "less is more" folk and decided against pressing for a SCT. I guess age has something to do with it, also other health complications. I think that what will help this debate is the DNA profiling experimentation. I expect SCT are more effective with some paths of MM than others.

I also thing SCT takes a lot of commitment on the part of partners and I'm not sure Gordon could cope with it all when he has his own health issues.

I am always rootiung for those going throuh SCTs and especially those of you brave enough to have a donnor transplant.

All best wishes to you Peter on your chosen path.

Mavis

[BADGERParticipant]

Hi Peter

this is very interesting to me as I havnt had an SCT
Regards Jo xx

[DaiCroParticipant]

Hi Peter,

It's good to see you posting here… we met over lunch at the Nottingham INFOday a good couple of years ago… I am an advocate of less is more and I have followed Dr Berenson for about the same amount of time… you may well have put me onto him, or at least the reportage from the US MM conferences.

I also believe that our medics are sometimes too quick to pull us off treatment if little or nothing is showing. I listened to a Doctor at one of the US conferences saying that quite often treatments will start showing their efficacy after several cycles… whereas NICE puts short time-frame limits on results.

My SCT recovery was good and I was feeling excellent when I first started showing signs of relapse after 10 months… with only enough Stem Cells for one transplant. The American medics have shown me enough evidence to believe that dedicated MM medicines, used properly, can give decent remissions, with a far better quality of life than the bludgeon of the SCT procedure.

I don't see enough evidence of UK/European medics fighting for newly licensed medicines from the US, perhaps they do but I don't see or hear of it… in reply to a question on the new drugs my consultant said that they were 'a good way off yet' and that the scraps that we are offered (my words) are better than 'holding your breath' and waiting for UK/European licensing.

I would rather have less and have the medicines increased in dosage if there is no movement, rather than starting heavy, suffering side-effects and then having the medicines reduced… as we do now.

Regards

Dai.

[mhnevillParticipant]

Hi Dai

What you say seems so much sense. I wonder how we can make this particular opinion heard. Is this something Myeloma UK could help us with.

In the USA they have telephone ring rounds with Consultants where such issues can be raised. I guess that here the Consultants are so over-worked that they haven't the time for such luxeries. I sometimes wonder if our Consultants even have the time to read the research when they are holding such wide briefs. Is just my thought, or do most of our Consultants look after Lukemia patients and others with Blood disorders?

Best wishes.

Mavis

[Author]

Posts