I have a fairly urgent decision to make regarding my treatment. For the benefit of our US warriors, the UK National Health Service means that the overwhelming majority of patients do not have private healthcare insurance. I'm one of those.
Now, with the decision to switch from Docetaxel to Cabazataxel, my local hospital has told me that the only way to combine it with Carboplatin, is to pay £1,500 per cycle. This would mean a total cost of £15,000. I could just about find the money, but I'm also aware that Pluvicto might need to be paid for further down the line, so it's one or the other.
It's 'ridiculous' (this is how my oncologist has defined it): both drugs are generic, and I saw Carboplating for sale in the US for $92 for 4 vials. To make matters worse, we have in the UK a 'postcode lottery' - some Trusts will approve treatments, while others will refuse.
So my question is simple: are there any UK warriors out there who have been given the Cab/Carbo combo on the NHS? I promise never to name sources when I come to make my argument!
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CrocodileShoes
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Well, whod'a thunk it. It turns out that my new onco thinks that I might have neuroendicrine elements to my tumour! After 14 years, when no-one has detected anything..... I have no idea where this leaves me now. The research team is going to dig out more data.
You need a new biopsy of a met to determine if there is neuroendocrine tumor present now. You will not live for 14 years with neuroendocrine tumor. As long as the MO just assumes neuroendocrine elements, I would avoid the side effects of carboplatin.
If you in fact need Carboplatin (gp24 comment), and coverage is a postcode lottery, you may want to consider writing your mp. Approved generic drugs should be free at the point of delivery for everyone; it is a national service and should not depend on the Trust you happen to be located in.
In other cancers, it works especially well when PARP inhibitors work, so if you are BRCA+ it may be a good idea.
If you are PSMA-avid and concordant, Pluvicto may be best next.
Some patients in your situation go abroad for treatment. Even with airfare and lodging, a trip to India for treatment may be less expensive than paying out of pocket in the UK.
Yes. I was caught in the UK post code lottery. Disgusting. NHS is NHS regardless of post code. Should be true but obviously is not. Have you thought of relocating to a NHS friendly location?
Further to the postcode lottery, a friend suggested you ask your GP to recommend you to an area which covers carboplatin. GPs are being encouraged to send their patients elsewhere if it means quicker treatment. May be worth a try.
I'm so reluctant to name names (because people could lose their jobs, such is the stupidity of our system) but I've now found a NHS trust that is willing to carry out the Cabaz/Carbo Combo (henceforth known as CCC) for 10 infusions at zero cost. I will always be grateful to our health service that allows for free treatment at the point of delivery. But in my case, I've only managed to work the system for two reasons: 1) I'm a persistent, stubborn old bugger 2) I'm in contact -thanks to this forum - with dedicated caring professionals who recognise that patent unfairness of a system where the better informed get the better treatment. It's far from perfect, but it means that an asylum seeker, just arrived in the UK is entitled to the same basic (and I stress basic) as that available to someone who has been honoured by the late queen (thanks, your maj).
If anyone should need access to who, where, when, you'll have to DM me.
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Cabazitaxel?
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Rock on Cabazitaxel!!
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