If you are self funding abiraterone in the UK (ie not on NHS or paid for through private health insurance), how much are you currently paying per month?
I know the list price is 2735 pounds per month, but that it can cost more depending on which pharmacy you buy from.
Grateful for all replies. Here on behalf of my Dad, who has recently been upstaged to T3bN1M0, following HIFU for an original diagnosis of T2N0M0. The current treatment plan is ADT (Bicalutamide, LHRH injections, for at least 1 year), 6 cycles docetaxel, then 6-8 weeks radiotherapy to prostate and pelvic lymph nodes.
We are trying to understand if privately funded abiraterone is a realistic and worth it option, instead of docetaxel. Am aware of the CHAARTED and STAMPEDE results.
I heard that that the NICE appraisal on abiraterone for hormone sensitive prostate cancer is expected in March /April 2019... if anyone knows anything more about that, would be interested to hear.
Great to see such a supportive and thriving community here.
Best wishes to all of you,
SCA83
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SCA83
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Where do you live in UK. If you can get to the Royal Marsden Hosp (Sutton branch, South London) under Prof De Bono he will probably enrol you in his Abiraterone trial. The drug is then free.
My husband has been recently diagnosed with the same staging and the treatment plan is the same as you've outlined.
I have asked our oncologist about Abi and was told that outcomes are the same, that the only possible benefit would be possibly less side effects on Abi. He said it costs the NHS £15k a year and to get it we would need the whole treatment plan to be done privately, i.e can't do some NHS and some private (prescription)
So we've decided to go ahead with doxetaxel which starts on Friday. I know quite a few men who have continued to work through it and found it manageable.
Good point about having to pay for care as well if you pay for the drug privately. I confirmed this with Cancer Research and they said yes, you have pay for care directly related to the abiraterone (appointments, bloods, the prednisolone etc.).
I've read quite a lot around the abi vs docetaxel debate now. There is some analysis which says progression free survival may be better on abi. But there are also lots of factors involved.. different disease severity, length of the course of treatment. And abi also has significant side effects. I've found these videos which might be of interest, where Prof de Bono, who developed abi, says he would probably choose docetaxel over abiraterone in metastatic hormone sensitive cancer. Its worth watching. I think on balance the docetaxel makes sense.
Good luck to you and your husband for today! Really hope it goes okay.
I've been very heartened to see how many new and effective treatments for prostate cancer are coming out now. Touch wood we won't need them, but if so, it looks like there'd be a lot of future options for people like my Dad and your husband.
All the best to both of you. Let us know how it goes
what happens if you are travelling for private treatment to another country how can they possibly monitor you and take over your care if you are a few thousand miles away and the private treatment is administered every 3 months for example....
I don't know how people work this out Dominos7. I guess speaking to your oncologist, and asking on the forum here for people who have done that is your best bet.
I don't know the name of the specific trial but would highly recommend De Bono. His unit run lots of trials to suit different types of patients. They also do genomic analysis routinely.
how do you contact de bono in the first instance is it a case of going with the royal marsden 2nd opinion option and just pay the £500 for them to read over your medical notes ?
Hi Dominos7: I contacted the Royal Marsden last week. Currently Professor de Bono only sees NHS patients and does not offer a second opinion service. I think the best contact to verify this yourself is to call Central Referrals or ask to speak to the secretary covering Prostate at the Drug Development Unit Royal Marsden. They told me that de Bono works principally on Phase 1 trials (initial stages of testing new drugs in humans), so the patient group he works with is those who have already progressed on/after other standard treatments (i.e. metastatic hormone resistant patients).
Royal Marsden second opinion: You can get a second opinion (written or face-to-face) privately – self referral here: royalmarsden.nhs.uk/private...
Thanks Sca, as someone also in the uk, could I ask if you are going privately for your dad to royal marsden or has prof de bono accepted you as an nhs patient? or thirdly- and sorry for all the questions did prof de bono enrol you in a trial. he is currently involved in the keynote 199 trial with keytruda to my knowledge but it has stopped enrolling since 8th December I believe .
We are not seeing Prof De Bono at all, because he does not see patients for second opinions. (My understanding is that he sees patients via NHS only, and that his involvement is for men whose cancer has progressed after/during standard therapy (e.g. already had ADT) and who may be candidates for other therapies as part of a trial.) My Dad has hormone sensitive prostate cancer (i.e. just starting ADT now), so most trials are not relevant for him yet (the majority are for men who have hormone resistant prostate cancer).
Very happy to share info and answer questions, but for info specifically relevant to you I really recommend calling the Royal Marsden to discuss your circumstances (using numbers in previous post above). They are very helpful.
You can ask for be referred to an oncologist at the Royal Marsden, as an NHS patient or private, for both second opinion or for management. NHS referrals are ia your doctor, and private referrals are self-referral.
Try calling Prostate Cancer UK Specialist Nurses for more guidance on trials relevant to you and still recruiting 0800 0748383. I found them very helpful. They will research and email you back.
Thank you Walter. That's a kind offer. As he'd need a longer course than 4 months, and as we want to work in collaboration with his oncologist, and he still has good options like docetaxel on the table at this stage, we won’t go down the route of self prescribing. I really appreciate it and thanks again.
Dear Walter, my husband has been on Zytiga for 4 months now and he is responding very well to it however, the insurance will not renew his policy so we are desperately searching for ways to buy it privately. I know it has been 5 months since your post but if you still have those bottles, we would be most grateful to receive them (we are from Devon). We look forward to hearing from you. Best wishes, Minh Thu
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