Battle plan!

[Emsymits]

Hi lovelies

Right. Well following my post BRCA 1 news strop and associated giggle juice consumption, I am now determined to kick this b@stard disease into touch! (Perhaps working my way through all the Game of Thrones DVD's is having an effect!)

My way of dealing with things is to research, make strategies and do something. I can't idly sit and do nothing or I feel I'm not giving it my best shot! So.... I need to sort Plan A, B C etc

I'm 3A and am not going to delude myself that I'm going to be NED for ever. I hope so obviously, but am being realistic.

Right so, info needed to planning! Help please ladies...

1. When would I get access to PARP inhibitors on the NHS? At first occurrence? Second? third?

2. If you have PARP is it a forever you take it or is it a course of say 6 months or whatever?

3. Does it affect white blood cell count like chemo? ie what health wise can stop you being able to have it?

4. How much does it cost if done privately?

5. Has anyone got their private health insurance to pay for it?

6. Is there a limit to how long you can take it for?

7. Is there anyone out there who is 3A too? ie tumour and in lymph nodes but not anywhere else?

8. Do you think I can get a full body transplant on the NHS?!

😆 any answers to the above would be fab as I need to budget and plan. We were going to rebuild our rickety garage with a shiny new garage/extension so I'm trying to work out how much I need in my cancer fund instead!

Im hoping you can save me hours trawling the Internet!

Love to all,

Em

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[Katmal-UK]

Hi Em . I'm on a trial for Olaparib. Not sure how it is accessed on the NHS but to meet the criteria for the trial I had to have the BRAC gene and I had to have had 2 recurrences. I'm on the trial until another recurrence (in my case I have been on it for 3 years 9 months currently). As far as I know it doesn't affect white cell blood count, though it has made my red cells misshapen! Originally the trial was for 2 years but as it appears to be effective I will stay on it. The cost, I have been told is approximately £4,500 per month (not sure if that includes the cost of the drs, scans every 24 weeks etc) though I believe that may have reduced now. Oh and if a full body transplant were available I'd defo go for a slimmer model etc :). Hope that information helps. Take care. Kathy xx

[Elizabethe]

Hi there,

I am 3c & just ended chemo for first recurrence. I'm aware of 3 PARP inhibitors, olaparib, rucaparin, and niraparib. Kathy has explained olaparib above. I'm on niraparib as an experimental drug. It is up for approval by the NHS I think around December, then NICE will issue guidelines about eligibility criteria. I'd imagine that would be around spring 2018. The cost of niraparib is several thousand per month I think, don't know exact figure. Rucaparib If you look at my profile I shared an article about recaps rib recently which explains it more clearly than I can.

Take care and wishing you a long or permenant remission - they do happen

X

[Elizabethe]

Just re read Kathys reply. So to get olaparib on the NHS you have to have 2 recurrences, be platinum sensitive and also BRCA positive.

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Just had a giggle at you full body transplant question - thanks for the jolly start to the dayx