[strummer07Participant]

Thanks again for the responses. Having already got the stem cells drawn off and in storage …The £30,000.00 figure sounds about right, we will earmark some funds for this as “Contingency”
I don’t want anyone reading this to be alarmed ..I am NOT saying that any funding for anything has been stopped. But all treatments for any drug or treatment have to be approved… (By Nice I assume) ..So, its not just any old treatment willy nilly. I am reacting to a comment by the Consultant that they are experiencing “Some problems in getting funding for third Stem cell transplants, some get approved , some don’t”
This could depend on all sorts of factors including the patients health as well as just funding issues and cutbacks etc..So I just wanted to be informed and ready …IF we hit this hurdle.

To answer PeterP’s question ..Why is so much made of SCT ” ? … because its generally regarded as the Gold standard treatment for Myeloma ..IF it works and is appropriate from you.
Its important for us as SCT has worked really well for my wife, better and longer lasting than any other treatment…and we’ve (she has) had a few !! ..this 2nd SCT- giving us over two good years (we are now 6 years in from initial diagnosis) whereas Velcade was much less effective (and I know that was expensive !).. So brilliant that you got 4 years from it PP – Outstanding !! …….
So its very much horses for courses and finding the treatment or combination that works for you.
Right now my wife is on a maintenance dose (10mgs) of Revlamid per day (3 weeks on 1 week off)and that (fingers crossed) seems to be holding the wretched paraprotiens at bay.
Onward ……thanks again and best of luck to you all as you fight the good fight

[strummer07Participant]

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

[strummer07Participant]

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.

[strummer07Participant]

My wife has now had 3 bone marrow biopsies and since the 2nd she has just asked for a small general anaesthetic. its very mild and only lasts for half a minute or so ..but it makes the whole thing bearable. With some hospitals you have to arrrange for it early AM as you would a normal op ..so almost do it as standard.

Good luck with yours

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