USA to UK transfer of cancer treatment?

Hi there,
Does anyone know, or have experience of transferring treatment from the USA to the UK?  Briefly, in 2005/06 I was in England on a spousal visa when I was diagnosed with a rare advanced highgrade stage four cancer.  The NHS was ill-equipped to deal with my case with the urgency it needed.  We flew to Los Angeles and have received life saving treatment here (Lots of chemo and radiation).
Now that things are more under control, we hope to continue our lives in England at some point.  However, my oncologist wants me to do post treatments for a year or so.  Does anyone have any advice/info on whether it would be feasible to have my oncologist advise a doctor with the NHS on my treatment protocol?
Many thanks,
Grant

I'm sorry I dont have any answers, just wanted to say hi Grant!  Haven't seen you around here in ages... 

Lovely to hear from you, Grant. I was wondering what was going on with you. Sorry I don't have answers either. I'm just glad you got the treatment you needed.

Hi guys!  Thanks for saying hi.  Yeah, it's been a crazy 6 months.  Really disappointed I had to leave England, REALLY itching to get back.  Hopefully in Jan, but my doctors won't promise anything.  Please give the UK my love ;-)

Depends on specifics, but I got treatment at the NIH (in California) just over a year ago, and found I could do further treatment here -- I could actually bring the drugs (and this was a drug trial, but it still was allowed).  (THis was last summer -- I wasn't really moved over here at that point, but just spending time here on extended holiday.)

I brought my records from my haem/onc when I officially moved here this summer, and sat down with my doc at the start to go through it all (just saw him today for my FBC), and so far, so good.  If I require further treatment, I may even be able to have the drugs shipped here . . . the two docs would stay in contact and co-manage my treatment.

You should be okay, but nothing is 100% certain, of course.  I, however, had no problems.

So you were/are shipping drugs from the US to the UK?  Was this approved by insurance?  Can I ask what insurance?  Is the UK suppling any of the drugs for your treatment?
 

So you were/are shipping drugs from the US to the UK?  Was this approved by insurance?  Can I ask what insurance?  Is the UK suppling any of the drugs for your treatment?
 

Was shipping drugs, a year ago . . .  treatment is over (for now at least).  And being the NIH (National Institutes for Health, in America) and a drug trial, they paid for everything -- patients don't pay for drug trials.   At this point I'm on supportive care as required (transfusions if needed, and occasionally a drug to boost blood cell production), and I just go to my doc here in England and the NHS takes care of it all.  I have no other insurance.

I suppose our cases are quite different (I have a rare disease, one in a million is the current number who get this, so there isn't much research out there for rare/orphan diseases), but I'm sure things will not be much different for you in terms of shipping drugs if you need to.  But if you have a standard drug, you should be able to get it here without shipping. 

Good luck, and if you have further questions, just ask.

Actually, that's about the rarity of my cancer.  One in a million basically.  It's called rhabdomyosarcoma (mine was stage IV, with mets to the lungs) and is usually found in roughly one in every million US children.  In adults it's even more rare.  And there is a real scarcity of funding for young adult cancers (and no progress in survival rates since 1975).  That's why I'm uncertain of what medicines/scans the UK would provide compared to the US (I've been told I will be on Interferon and Leukine injections for a year or so, plus "bone juice" - I forget the clinical name at this point).  Plus I'm on med-ical and social security here, so not sure how things would change when trying to move/travel back to the UK.  But I really want to get back to England and continue my studies.  Trying to feel out all the various options.
Do you mind me asking what disease you have?
do you have to get regular scans?
many thanks,
grant

Actually, that's about the rarity of my cancer.  One in a million basically.  It's called rhabdomyosarcoma (mine was stage IV, with mets to the lungs) and is usually found in roughly one in every million US children.  In adults it's even more rare.  And there is a real scarcity of funding for young adult cancers (and no progress in survival rates since 1975).  That's why I'm uncertain of what medicines/scans the UK would provide compared to the US (I've been told I will be on Interferon and Leukine injections for a year or so, plus "bone juice" - I forget the clinical name at this point).  Plus I'm on med-ical and social security here, so not sure how things would change when trying to move/travel back to the UK.  But I really want to get back to England and continue my studies.  Trying to feel out all the various options.
Do you mind me asking what disease you have?
do you have to get regular scans?
many thanks,
grant

Right -- the rare diseases get no funding because there is so little money to be made.  It's just mathmatics -- they can't put billions into research and have ten patients a year -- they'd lose everything.  There is legislation in the works (ongoing) to provide better tax benefits (and other incentives) for pharmaceutical companies who will do research into rare/orphan diseases, so that hopefully we can at least get treatment and maybe even eventually a cure (mine has no cure at this time, but sometimes you get a remission, which is where I am). 

Isn't it a shocker when they tell you that you have a rare disease, something most people have never heard of?  Like 9/11 or the Challenger or JFK's assassination, you'll always have a mental snapshot of the moment, in detail . . . your whole life just stops for a while.  And with no cure or proven treatment (in my case, at least), you realise that these drug trials are the only hope you've got.

I'll PM you my details . . . 



P.S.  What is 'bone juice'?  I know you don't remember the name, but what's the purpose?  Something to boost the marrow after the treatments destroy the blood cells?  I've had neupogen and epogen for trying to boost red and white cell production.  Just wondering . . .

Wow. Hi, Grant. I too was wondering what had happened to you. So sorry to hear that you've been ill and very glad to hear that you got the treatment that you needed. Hope to hear that you're back here and thriving again soon....

Hi Anne!
Great to hear from you.  Not sure if I ever told you, but remember my whole battle with tuition and trying to find a loop hole with the international fees.  Turns out I found a different 'loop hole:' a Overseas International Scholarship!  Yeah!  it pays for all the interternational fees for three years.  I was SO happy to receive it because there were only 6 and I was told the competition was STIFF.  I was supposed to start this autumn (at Royal Holloway, U of London), but this whole cancer mess interfered.  But it gives me that much more to fight for to return to (they will defer it as long as I need). 
How are you doing?  how are studies?