This topic contains 15 replies, has 10 voices, and was last updated by 
strummer07 10 years, 2 months ago.
Hi,
My wife has had Multiple Myeloma since July 2008, and like most people its been up and down since then.
2 x serious bouts of Chemotherapy and 2 x Autologous Stem cell Transplants.
First one one worked well for 18 months plus
2nd one has lasted for just over two years now and with a small Maintenance dose (10mgs per day 21 days of medication 7 days “off” ) of Revlamid
Right now she is doing pretty well and we are optimising our life and time together
Her paraproteins, which have been negligible for the past 2 years ..but (as ever) just seem to be creeping up slowly 3.0 % 3 months back and now just nudging 5 %
WE are told there are other options in the pipeline now …….but with NHS cutbacks they are having some issues getting authority for 3rd stem cell transplants. Some get approval some don’t ?? ( we are in the South of the UK and are linked to Hammersmith for Stem cell procedures )
Obviously we will cross those bridges as and when we come to them.
But , in case we need to (She has enough stem cells gathered for a good 3rd stem cell transplant ) if we have to proceed without funding ( which I would do without even thinking about it !!) ……can anyone give me an idea of what the NHS would charge to provide a Private stem cell transplant ??
Any information would be helpful so we can earmark / save funds ..and if I can offer any insights into MM after 6 years of living with someone who has this rotten disease ..happy to help
Hi,
I can’t help with an idea of the cost of a SCT but your post worries me and probably a few others. After the government has decided to cut the Cancer fund and all the money wasted with more reforma, perhaps, you – the patients (I can’t, I live overseas) ought to start lobbying your MP’s or e-petition No 10. Afterall, it is your lives they are risking, not theirs. At the risk of becoming political, I think you need to read the piece below, bit of an eyeopener if only proved to be half true. Again a case to worry about your future.
Hope you don’t think I am trying to hijack your thread but it beggers belief that a health system that is supposed to be for everyone is now being more exclusive and, like insurance companies, will operate on the basis of looking after those that are low cost amd may not actually need it.
Worrying Richard, perhaps Scotland should go it alone and have access to nhs.
Maureen
Thanks for the responses so far…..I’d really rather keep this thread around treatment and its costs ..and not about Politics or anything else. I realise that the whole Drugs approval and funding issues can be a bit of a can of worms …. but start another thread on that if you wish.
My question remains .. anyone have any ideas how much a stem cell transplant actually costs ??
Is it something one can actually do privately anyway ?
When my wife was diagnosed in mid 2008 I did ask about Private treatment generally and was told that unless I had a couple of hundred thousand pounds that I didn’t need … not to think about that route ….so the whole MM and Lymphoma treatment is expensive. We were also told that the private route would actually only really mirror the NHS route in terms of treatments and Doctors…. Choice of hospitals, appts and the “lodgings” were where a Private route was likely to differ.
Hi Strummer07
The cost of stem cell transplant would be around £250,000 according to information on the internet from a young boy who had one and wanted to pay the sum back to the NHS in the future. So the information you were originally given was spot on.
Private medicine does allow you fast access and choice of consultant, who may or may not operate from an NHS hospital offering private facilities and treatment. It does allow you to choose the ones with the greatest expertise if you have a not usual condition. But it does not guarantee that it will be better than NHS and usually you would not be expected to be treated by ‘junior doctors in the field’ as you are paying. However nursing and other staff may not necessarily be better than in NHS either. In a private hospital, where staffing may in fact be less than optimal, I have heard of a case where this led to serious issue for patient as consultant was not told of patient changes fast enough).
However, if you have the money and are being denied life saving treatment on the NHS it is a difficult call with MM.
Dusk
HI, there was a gent on here, would be from jan 2013 who had one at a private hospital through his insurance and I am almost sure it was around £100,00 – I do not think he chose to have all the treatment privately but just chose to have the SCT at the private hospital – which would not include harvesting etc. which may have reduced the bill. I know when I had my SCT I came home wondering why it would cost £100k so have always had that figure in mind for the actual SCT process alone. Sorry can’t be any more help – perhaps if you ring the helpline Ellen would know?
Hi, when I was having my stem cell transplant the hospital I attend have a six roomed isolation ward with private facilities ‘5 star’ there was a gent from the Middle East having a SCT, according to my nurse the whole treatment including harvest was £250,000.
Hope that helps
Regards
Tony F
Mmmm….perhaps the whole treatment package also included the drugs to get you “stable” enough to then harvest (6 months of those is quite a bill)- more drugs/harvesting with weird machines/storage then SCT. I am sure if there was a co-payment agreement chemo to get you into a stable position would no doubt be funded by NHS etc. Strummer, I do hope you have cells on ice and also do not have to consider co-payment. I do not think I would personally go down the payment route as I would not want my dependants to have a “hole” financially unless I thought it was curative… but then when you are faced with it you/I willhave a different thought process… but I do admire you both – especially your wife to be willing to have a third. Good luck and as Winston Churchill once said “never, never, never give up”.
Thank you for the responses ! ..Much appreciated.
Just needed to have some ball park figure ..In case !!
Right now ( thank goodness) My wife does not need the 3rd transplant in an urgent way…but it was at her 2 year check up from SCT #2 this month ..That this slightly negative information was gleaned
I was something like
“Right now we are experiencing some difficulty getting funding for the third stem cell process..Some go OK and some are don’t !”
I didn’t probe any further ..as its not relevant right now. (So no idea what the criteria are) But I want to be aware of what our options are … as and when we get to that stage.
Yup, My wife is one amazingly brave lady. She is the ultimate fighter in terms of this dreadful MM…My job is to support and to clear the path as best I can….Its a team effort !
We (She) have all the Stem cells harvested and being stored .. so that part of the process is all done (enough for at least 3 transplants was harvested)
SCT #1 was OK ,…. as OK as a SCT can be I guess … out of hospital in 20 days
SCT #2 was not such a walk in the park , very unpleasant complications ..and quite worrying. after that bout ..my wife was very clear ..“Never Again “ !!..and I could not blame her one iota. Its quite a process.
But we’ve had a really superb two years .. been able to use her time well and done some really lovely things together and as a family … and quite out of the blue the other day she just announced that she would think about SCT #3 if, as, and when that moment arrived.It is 100% her call. I am just a supporter.
So as and when that horrid time comes- I will do all I can to make sure it does happen -Somehow !
… What is the point of Money if it can’t give you an extension of life.
and hopefully by the time that decision is upon us ….All will be well with the funding process anyway.
What is the point of storing stem cells ..if you don’t get to use em !
Thanks again .. and best of luck to you on your own ongoing battles with MM… and as Rebecca reminds us ..Never, Never, Never give up!”
..and again , if I can help or answer any questions ..don’t hesitate to ask
Unfortunately, we all know that horrible time will come, let’s just hope that your consultant is thinking ahead rather than respomding to some specific data. All the best and I hope your wife’s remission continues on.
Richard
Hi, Glad to hear such a decision is not imminent – I am always reading “things” for the back of mind for future reference and I have always been concerned that I have heard of some who have experienced heart/lung problems after the 2nd SCT which they blame on the high dose melphalan but have read recently – US site – that they are trialling a “revised” type melphalan thought not to be damaging to other organs during the process – so hopefully things are improving all round for the future of SCT. I am pleased your wife wants to go ahead as that is one massive neon sign that life is very good and worth it all – so well done to you both for not letting this “thing” ruin your life – this is by no means easy and takes great spirit, discipline and lots of love to do it well – congratulations for achieving this in the face of adversity as I’m sure many go through life never experiencing the “heightened” experience/love in life, long may it continue, good luck
Rebecca
Hi
I’ll throw my Dex induced bit of information in the ring. From what I’ve read I don’t think it’s so much cost based not having a 3rd SCT I think it’s statistics based. I could be wrong here but I have read or been told that the remission gained on a second SCT is “usually” around half the first. So I presume a third is shorter still. The trouble with stats is they don’t reflect individual cases. Unfortunately NICE rely on stats for their cost/benefit analysis.
There is a debate going on now about SCT versus just the drug route and this is not cost based more quality of life based but this debate is on going with no outright winner yet.
A problem with going the private route is you may find it hard to get NHS treatment afterwards. That may not be true but it’s something again I’ve read on here.
I’m sorry I can’t be more definite but after nearly 3 years of chemo my brain is a bit muddled.
I’m on Pomalidomide at the moment and £200,000 would cover the cost of about a years supply.
Hope I haven’t muddied the waters I do tend to ramble on my Dex nights. As one whome has never been able to get to SCT there are drugs that can give you a good quality of life without the trauma of SCT and more are coming along all the time.
Every day is a gift.
Andy
I hope it is ok that I ask: Do You have to start paying for cancer treatment after a fixed number of treatments in the UK. I thought that most of us in the EU and the north west of Europe was fully covered by our respective public health systems.
clevin.
I expect I am wrong but I often wonder why so much is made of having more than one SCT, perhaps I was one on the unlucky ones it took 3 attempts to harvest enough cell just for one SCT however it all went ok I came through it, but the downside it only lasted a year, since I have had various drug treatments which gave me far better remission periods, one Velcade was 4 years and side effect of than is far less than a SCT. Peter
My husband had 2 SCTs in 2010/2011 we were told that the cost of each was £30,000 We were fortunate enough to have private health care and the bills we received were for food etc in the hospital.
I am still not sure who paid the cost of the SCTs but I think they were on the NHS.
If they have stopped funding transplants on the NHS I would sign any petition to protest. When I think of the money that we pay into the NHS and how abused it is eg Health Tourists I get really cross. I have read about people from abroad “visiting” family here and “discovering” that they have an advanced illness that would cost a fortune overseas but we just shove it on our NHS bill.
Rant over. Good luck to you and your wife
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