Hobson's Choice

Hi John Boy2

Jeez. That’s a tough one. It seems so unjust and bureaucratic. Putting the injustice to one side, it looks like a financial decision to me. Can you afford the Tagrisso and if so, for how long? Retiring might make lump sums available but you’d need some good financial advice to make a decision. 

What can I say? If you were my dad and it was a choice between spending the inheritance on the drug that works and makes life tolerable or leaving the cash to the kids, I’d say spend it. But that might not be the choice you’re facing. 

I hope you can make a decision that you’re happy with and grrrrr to NICE

xxx

Thanks Daloni,

What you've said above is the same as I have been thinking. I've even tried to get in touch with AstraZenica to see if there is any possibility of them reducing the cost. The dilemma I have is that I am also funding the extension to my daughter's house (once it gets underway) so my disabled wife will have support once I depart these mortal coils (to "parrot" phrase Monty Python). I am sure the family's view would not differ from yours, but I would not put that choice on them.

John

Hi John Boy2

I see your dilemma. One more thought. Bear with me.

I have a BRCA mutation and a diagnosis of womb cancer caused by the mutation. The brca mutation is more usually associated with ovarian and breast cancer (think Angelina Jolie) and there’s a group of drugs that are known to be effective for those with brca related cancers called PARP inhibitors.

If I had been diagnosed with ovarian cancer, I could have been treated with one of these or got onto a trial. But because I have the “wrong” cancer, I didn’t qualify for either. I found a consultant who was able to get me onto a PARP inhibitor under what’s called compassionate use. She applied to the drug companies that manufacture the PARP inhibitors asking them to fund my treatment as a special case. I had 15 months of treatment during which my cancer remained stable.

It might be worth asking your consultant whether he has access to compassionate use funds. 

Good luck! 
xxx

Thanks Daloni - sound advice. I think I already know what I will do, but still scary whatever decision I make. I'll also ask my oncologist about access to compassionate funding.

I've had an initial reply from AZ but all they were interested in was any side effects I encountered, but I'll let you know if this changes.

Hi John Boy2, I’m not sure things are always as black and white as they seem.

 I took my pension early as I thought I had less than a year but a new treatment came along and I’m still here. Side effects are a list of probables, and for me side effects on my drugs have been minimal. 

I think most decisions boil down to head versus heart, logical fact based versus how we feel we want the rest of our life to be like. We all have different priorities, and a key to making a good decision is to sort out what your priorities are. 

Some half way house thinking might be to (if you can) take semi retirement, the advantage of the lump sum but work part time, this is what my husband did to spend more time with me as he could do this when he was over 60. I’m also wondering if you can try the NHS drug to see what it’s like, and delay the decision on paying for the other one until you can compare the two, it might be a question to ask.

When Ive had to make a treatment decision it’s been hard until the decision is made, and talking it through has helped me or writing things down, the Macmillan support line or perhaps you have a cancer support line with your private insurance, might be a sounding board as well as here.

wishing you all the best with your decision.