[DormouseParticipant]

Hi Carol

I was started on CDT (it does seem to be the default “first move”) but when I stopped responding to it I was given Velcade. In my case Velcade was easier to live with but I did not respond to it and I am fairly certain that it was responsible for my developing VF which has left me with more of a disability than the Myeloma has up to now. The side effects of the drugs I have to take for my heart are difficult to live with and have made my potential SCT more complicated and, I suspect, reduced the likelihood of success.
I’m sure Velcade is a good drug and clearly works well for many people but it’s not a magic wand and like all the drugs we use, has it’s own dangers. Try not to think about what might have been – that was lies madness!
We are all intelligent human beings and we have every right to campaign for access to all available treatments but you have to trust someone. I have taken the decision to trust my hospital team get me the best available treatment and to settle for that. I am mindful that twenty years ago I would have probably have been severely disabled by now – if I had survived at all. I will campaign for quicker access to new treatments but I now have a rather more cautious approach to novel drugs!

[PhilipandfionaParticipant]

I’ve been following this topic with interest. I absolutely believe that here in the UK access to treatment should be on needs and not cost. However if CDT works as a frontline and is cheaper than velcade initially then surely using that is a good idea. Paracetamol is still used in hospitals as a frontline pain killer because it works and it allows them the funds to use the big expensive guns only when they’ve exhausted the other stuff.
I know a few people who work for big pharma and yes, to a man or woman they all are dedicated and caring souls. My sister is doing some research into the cost of creating new drugs, and so far she’s found the average cost of getting one to market us $1billion. I guess the pharma companies need to charge a fair bit to recoup that and the costs of the ones that didn’t quite make it all the way but still cost a lot. people still die of dysentery in the 3rd world because they can’t afford clean water. That should be top priority nor drugs for a small minority.
I have probably written this all wrong, but I’m glad I live here and not in a developing country where so many other things could kill my husband before they myeloma.

[duskParticipant]

I think personally I have several issues with the way this topic is being viewed on the forum.

Firstly I do appreciate how fortunate we are to have the NHS- indeed I am not being political when I say that you can judge a society by the way it treats those in need who are without resources. The NHS is a gold standard for healthcare access for all.  But that does not mean there are no regional differences as to the delivery of care and experiences of those that seek medical help. It is a fact that some lottery exists, though we often are not aware of this.   I will leave you to think about this as my aim is not to preach.

Secondly although it costs pharma lots of money to take promising drugs to the market and yes many, (not all as I know from personal experience of people in big pharma),  people who work at the scientific level are committed to finding ‘cures’.  The truth of how pharma actually progress research and market drugs is rather complex and I will not go into it here. But those who are in trials, whether they know it or not, (and in some parts of the world big pharma is not necessarily behaving well), are not an elite. I do not see the point of promoting more and more drugs which will not be used routinely by the likes of the NHS because NICE decides they are too costly and the current system works for most people. That does not mean it is right for all people and sometimes the guidelines are rather rigid for clinicians to be able to offer the individualised approach to myeloma sufferers.

CDT is a good combination, long used in the UK.  But with expensive novel drugs increasingly used globally as front line for MM, and shown to very effective, the picture of whether it is entirely the only combination of front line MM treatment that should be offered in England is another matter entirely. This should be a clinical judgement and not a cost judgement. That is my point.

As to the fact the NHS cannot afford everything. This is where I will be political – rescuing failing banks  or allowing large corporations to avoid payment of the correct tax is not what I accept.  Tax revenues which support the welfare of society are significantly depleted by this. That does not start to take into account a whole lot of behaviours of politicians which the majority public do not support in terms of the public purse / expenditure. So when we are told by NICE that some drug for MM can only be for relapse/ refractory MM essentially because of cost (has happened with other cancers in England) then I do feel very angry indeed.  Having MM (or any difficult cancer) is bad enough without this.  Some of us will not live to get the state pension we have paid into- I do not think denying us drugs is fair as the money saved in paying out pensions.

Finally I know that no one really knows what drug combination / treatment regime will work best and optimally ( e.g. remission / QOL) for any single individual and that is the guesswork. But there is also something called intelligent guesswork based on evolving science / medical science. Because it is teams that discuss the treatment regimes for MM patients they need be able to use current intelligence optimally.  The argument is not about Velcade vs standard therapy, it is about allowing clinicians to research and make the best decisions based on each individuals needs.

Dusk

 

 

• This reply was modified 10 years, 8 months ago by  dusk.

[andygParticipant]

Tonight is my Dex night and I’m not going to bite! Wow that’s a first.
I don’t know a lot and I’m not going to go into it here 😉

All the best everyone

Every days a gift
Today is the start of another new cycle

Andy

[Author]

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