[ianbParticipant]

Hi Gerry, sorry to hear things are not too good.

Also sorry to see that your consultant said that only 1/3rd of patients have a successful outcome, that concerns me no end. The drug info sheet rates the success rate at nearer 61% as a mono treatment. When used as a combination treatment this increases to 83%-93% depending on your starting condition. Much greater than 33%. What really gets me here as well as the discrimancy is that almost everyone else, including NHS Scotland have approved this drug for use as a combination drug based on phase III trial results which NICE are happy to ignore under the guise of gathering more data. Data which, I assume, has all ready been supplied under the Phase III trials, or why would others be saying it is the best approach. It is all down to cost, are we worth the spend on better drugs over the lesser live saving results and cost of existing drugs. I cannot see any acceptable reason for NICE to take this approach if any care or compassion was given to the patient and their families. Everything is financial.

Good luck, and i wish you well.

ian.

[ianbParticipant]

Hi I am picking up a few sigs and shares and will keep sharing where I can. This could so easily have been me.

Has there been any thought in taking this injustice and what can only be described as moraly wrong to the media to try and get this story more public?

Ian.

[ianbParticipant]

Potition signed and shared on my FB page for more sigs.

Ian.

[ianbParticipant]

Hi, I am starting Daratumumab on Monday as a 4th stage treatment as per the Nice approval, based on the phase II level tests. All well and good, until you find out that most of Europe including Scotland  have approved it for use as a combination drug based on the results of the phase III level tests, which show are huge increase in success. Nice have openly stated that they feel they need more data so they can evaluate if the benefits of patients living longer against the cost of treatment. Basically is human life worth our expenditure. I do find this a rather disgusting and morally inexcusable. Why are Nice and the English NHS playing GOD.

BTW, I also find it disgusting that the rules mean you miss the opportunity to potentially benefit from this drug so will now go and sign the petition.

Ian.

[ianbParticipant]

Thanks to everyone who has commented back, i really appreciate it.  I’ve got to be honest, i am a little bit on the fence here.  Having had a really good response on Lenalidomide and the lack of data on staying on a maint dose of Lenalidomide against having SCT is niggling me a bit.  I know the history behind the SCT but my consultant said that there may be an argument for not going down that road now even though he is keen for me to do so.  I have always put my trust in my various consultants, up in 9 Wells, Dundee and now down here in West Sussex and whatever they suggested went but this one is troubling me a tad. I just don’t have a warm fuzzy yet. Obviously the risks involved are a concern.  I am not a straight forward Myeloma patient, having had all sorts of infections, surgeries, instabilities that side effects do worry me, including the 5%mortality bracket my consultant said i fell into. 5% may sound a decent risk to many and in my heart i know i shouldn’t give it a second thought but the fact he mentioned it a couple of times has planted it in my head now, silly, i know. Anyway, today is  sit on the fence day while tomorrow will probably be a lets crack on with it day.  That’s kinda how it’s going just now. But, should i go for it, and i probably will tbh, i will be much better prepared thanks to all your comments.

It’s good to talk, as they used to say.

Keep Smiling,

 

Ian.

[Author]

Posts