prescription / overseas treatment

User

Posted 04 Mar 2015 at 07:18

Hello to All out there,

Thank you so much for taking the time to read my concerns.

This is my first posting on this forum! I have a 77 year old father in the UK who up till two weeks ago has luckily been healthy and fit . Unfortunately he has been recently diagnosed with advanced prostate cancer and we are now waiting to find out from the bone scan/ct scan if it has spread at all . What we do know is his Gleason score is 3 + 4 . He has seen a specialist and was prescribed Covex 50 mg plus injection in stomach periodically.

My father just happened to read the letter from the specialist today that he just received regarding his prescription . He immediately observed that he has been on 150 mg of Covex for e last two weeks instead of 50 mg! Three times the dosage he should have been on!!!! This was a complete error on someone's oart ans I am now very concerned on the side effects from him having taken this without knowing it was the wrong dosage until now. He alerted his GP who is putting him on the correct dose as of today and said it should be fine but I really would like some more feedback on this if possible please? Can someone please shed any light on the possible side effects , if any ? I know the liver must be affected from this and have read that with this drug people can die of liver disease within 3 to 6 months.

Also I am a UK citizen but live in USA. I love my Dad so much and am an only child. I would love to bring him to the US for some time or better still the whole time for some of his treatment if it were at all possible. I really want to be able to juice for him as cook and look after him. Does anyone know if this can be done at all ? Are the NHS open to having treatment take place overseas outside of Europe? I love and greatly admire the NHS and all it does but would love to just be able to be with my Dad at this time.

Thank you so much for reading this. My thoughts and best wishes are with all of you that are affected by this disease in any way.

User

Posted 04 Mar 2015 at 14:50

Sorry All-

My Dads prescription is casodex ( not Covex)

PSA reading 384(?)

He has been advised it is advanced stage but we are waiting for scan results.

Thank you

User

Posted 04 Mar 2015 at 17:35

Hi Britexpat,
Casodex can be given as 150mg or 50mg dose, depending on why and how long for, so the additional dose is unlikely to have done him any harm and it may be that the doctor is just used to giving the higher dose to other patients or the oncologist changed his mind. My guess is that in your dad's case, the casodex is intended to be very short term to prevent tumour flare if they then prescribe him a different kind of hormone treatment once the scan results are back.

As you obviously realise, the PSA suggests that there is already spread so treatment will probably be about control rather than cure. Even so, there are many men here that have lived well for many years with what at first appeared to be a dreadful diagnosis, including multiple bone mets so there is much for you to still look forward to and plan. Sadly, I am not sure that a visit to the USA will be one of the things you can achieve - not because of the NHS but because I think you will find it impossible (or possible but outrageously expensive) to get him any travel insurance for the USA. Maybe start planning for a visit home instead?

Edited by member 04 Mar 2015 at 20:19 | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 04 Mar 2015 at 18:02

I think it would depend on the treatment plan. I have taken my 3 monthly hormone injection (decapetyl) with me to Turkey and had it administered there. Cost a minimal 50p to have it injected in a very modern and well equipped hospital. No queues, just turned up and was seen by nurse. Just needed to make sure it was kept within required temperature range. They would also do blood tests, scans etc.

We went to California for a month Dec 2013 to Jan 2014 to stay with my wife's daughter.

I have advanced PC with spread to bones (PSA was c. 250 on diagnosis but came down with treatment) and had trouble getting travel insurance but got it at a reasonable price through AXA PPP. My consultant had to say I was fit to travel and on the balance of probability would be ok for 12 months.

I am 55 and relatively fit. We live as normally as possible and are doing as much as we can whilst we are able to.

Best wishes to your father.

Martin

User

Posted 04 Mar 2015 at 20:53

Perhaps part of the confusion is that Casodex 150 mg is not approved for use in the US though it is in the UK.
Names and dosages of drugs differ in some cases between the two countries. Approvals follow different protocols. Drug choices and sequences may differ between doctors in either country.

User

Posted 04 Mar 2015 at 22:38

Thank you all for your comments and feedback. My Dad actually found out this morning that the letter was incorrect and he is supposed to be on 150 mg of casodex after all- so I am pleased about this.

Re the USA treatment I realise it will not be possible to have anything done over here through the NHS but maybe he can bring his hormone treatment with him and have it administered here is necessary like Bakerms had done in Turkey. Many thanks also Balerms for the heads up about travel insurance .

I really appreciate all your time taken to reply and share your thughts/experiences. I also spoke to a lovely Scottosh male nurse on the help line this morning who was wonderful.

Best wishes to All.

User

Posted 06 Mar 2015 at 16:05

Just a quick reply to travel insurance.
After several phone calls to well known companies I was told
to try nationwide building society,my husband has advanced PC
with bone spread I told them this and they told me it would cost
£80 we pay £10 a month into a flexi account that gives you standard travel insurance
but with my husbands pc it would be the extra £80 they added that if you have not
been given a terminal diagnosis then they cover PC and breast cancer quite normally
I could not believe it after being quoted silly money and it's worldwide cover.
My husband had spinal cord compression one year ago and as of now he is walking without a stick
and is having a pint at the local .
Keeping positive all the way x

User

Posted 06 Mar 2015 at 19:57

I'll second the Nationwide.
Insurance through the account plus £80 to cover the PCa for the year.
I think it's reasonable.

All the best

Kevin

User

Posted 06 Mar 2015 at 21:44

And I'll third it. Free European travel insurance with a Flexaccount plus £80 pa to cover PCa providing you're not terminal. Good value for money.

User

Posted 07 Mar 2015 at 13:05

Ha ha ha! Spoke too soon. My renewal letter arrived today. It's now £96 pa. However, as the free European travel insurance covers me and my wife I still don't think a £96 premium to cover the 2 of us is too bad especially when I consider they could be on the hook for up to £10,000 if we had to cancel a holiday because of PCa.

Come to think of it, they have their actuarial mortality tables. £96 for a £10K risk means they think this old boy might last a good while yet. :-)

Edited by member 07 Mar 2015 at 13:07 | Reason: Not specified

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