Just wondering if its possible to buy this drug anywhere at reasonable prices? I know I can get generic abiraterone from India which can be affordable. Only problem is my dad already has had abiraterone many years ago and I would like to add enzalutamide to radium 223 which has been proven safe and more effective. But in the UK this has not been approved so it would not be considered as treatment as far as I know. Are there any countries where I would be able to buy this drug at a reasonable price? It's far too expensive here in the UK privately... and looking at American prices it seems to be about the same. Anyone have suggestions?
Thanks in advance.
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Howmuchisthefish
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Really? I had no idea. I was doing research and it seemed like only Abi was made generic. I'll look further into it. If you have any idea of reputable sellers I would really appreciate it. Thank you so much for the response!
That's actually affordable and i wouldn't have to sell a kidney lol! Which is awesome. I've checked but they are out of stock for that one and many similar enza clones. They do have some in stock but it says prescription required. I'm wondering if you just need to pay a fee for an online doctor and get the rx? Anyone have experience with Indian manufactured cancer medication?
One thing to remember is that exporting medicines for commercial use is a tricky business and requires multiple approvals. So most Indian online pharmacies won't ship outside India. But there are specific websites and individual sellers who circumvent this somehow and are able do this, probably by not showing the commercial angle of the transaction.
I am hopeful someone will be able to recommend a trusted seller to you. Just don't end up buying from any random seller.
I don’t want to be a spoilsport but might there be a ( medical ) reason why it is not approved in the UK ? It seems that a lot of people on this forum know much more than an oncologist who has studied for years and who’s day to day business it is to work with cancer patients and who most likely confers with colleagues about treatments etc.I put my trust in my oncologist working for a small regional hospital in the Netherlands, but with the backup of two university hospitals. It kept me alive for the past 7 years. It’s not that I don’t have anything to say about my treatment, I do , we talk about options and developments / studies etc. ,but the last thing I would do is “ self medicate “ .
Unfortunately this is the main reason. It is approved but not with radium 223. I mean our old oncologist told us we could try enzalutamide later on because he received abiraterone as part of a clinical trial. But new onco just said no. Anyway the old oncologist mentioned that it only works for around 30 percent of men who had Abi before or vice versa. I think its still worth trying especially since dad isn't doing too well and the doctor expects 6-12 months life expectancy. It's really frustrating because they made him wait for 5 months without treatment telling us its a very slow growing cancer and recently said well I won't lie to you but its not good to wait this long. Reason we were waiting was for another clinical trial they promised but there were problems with it.
I agree with you but in our situation I think my dad needs a stronger combination then just radium. We have been following all the doctors words and sadly we have been let down. What I'm hoping for is greater efficacy to buy him a bit more time for future treatment. Lu-177 could potentially be approved in November in the UK - nice.org.uk/guidance/indeve.... If not then I would be looking to do it privately maybe in Turkey or some other country where it's much cheaper.
Honestly I think Lutenium would be much better for him at this point but its not easily available on the NHS. They can refer you for it but approval can take about half a year. But we don't have the luxury of waiting anymore so radium 223 is better then nothing at this point. I've read some reports that you can have lutenium after radium and should still work well. Only downside would be he wouldn't be able to enter any lutenium clinical trials as i think most exclude you if you had prior radium therapy.
Onco said the outlook is 6-12 months life expectancy. I mean last PSA was around 4000 a couple months ago which wouldn't be so bad if he wasn't in severe pain.
Honestly would love to hear more opinions from you guys.
Sorry to hear that. My psa was 2000 plus and lots of bone pain. Within two weeks of the diagnosis I started on chemo , Docetaxel, and hormones ,Firmagon. At that time, at least in the Netherlands, the common therapy was start with one and when that doesn’t work anymore, start the other. My oncologist knew of studies that recommended both at the same time. Worked for me . Until 2018 , 3 years later. Then I started on Xtandi, enzalutamide. It is slowly starting to lose it’s efficacy. Next ? Another round of chemo ? I will also be checked for the BRAC gene . The oncologist says he still has a few tricks up his sleeve, he got me this far so I got faith in him. It sucks when you got the feeling or the facts that not everything is being done. I guess he’s on oxycodon for his pain ? Been taking that since 2015… but it works. Wishing you all the best.
My dad was diagnosed with nearly 4000 psa in late 2016. Last reading like I mentioned from a couple of months ago was slightly higher then that . His diagnosis was a nightmare as well, delay after delay. I think a big issue so far has been he has been treated at 3 different hospitals and seen by over a dozen different oncologist. So I think you are very lucky that you have a good team that takes care of you and wish you the best of luck.
I asked about more chemo for dad but they won't allow it because of the guidelines which above all are to save money or to be more specific the best bang for your buck sort of thing. Six months after diagnosis he had 6 docetaxel sessions and last year he had 9 cabitaxel sessions. I've heard about many men having many more cycles of chemo in other places.
It's just frustrating here they follow the same logic. One treatment at a time but the amount of time it takes to start a particular treatment is way too long so many months. I think before i wasn't as worried about my dad tolerating treatment but the way things are going I don't think he'll be in such a position in a couple of months.
Honestly I think all the clinical trials my dad has taken part of were such a waste of time. I mean we spent literally hundreds of hours at appointments, all the poking and scanning etc.. and none of them did anything better then standard of care. I think he would be in the same position as he is in today. The last clinical trial made his health even worse.
He's not on oxycodone at least I don't think. He's been taking this for many years Zapain 30mg/500mg Tablets and/or Co-Codamol 30mg/500mg Tablets. Along with over the counter ibuprofen. Last year he was taking oral morphine for a while as well and he had to restart that about a month ago as the pain wasn't controlled well. Even with the morphine the pain is severe. So a palliative nurse came around today and hopefully we can work out a combination that works.
I wish you all the best as well. It looks like you have great people taking care of you and long may it continue!
Enzalutamide is available in Australia. Maybe it is not approved in the UK unless one meets qualifying conditions. It is around $A3700 for 40mg tabs. Looks like quantity is 112. We were offered it on a trial however hypertension precluded him taking it. If on PBS $A41.00 or $A6.00 if on concession like age pension.🥲
Thank you once again. It is available but my dad already has had a similar drug before and they wouldn't allow this combination treatment in his case even though it has been proven safe. Appreciate the help
Yeah I think that's what I read. Here is something about it as well. My dad had his first injection of Zometa a couple weeks back so hopefully that would help.
''Prior to the safety update, only 46.1% of patients on trial were taking a bone-protecting agent, but afterward, 96.3% of patients were doing so. At one year of treatment, patients not taking bone-protecting agents had a fracture risk of 15.6% in the enzalutamide only arm and 37.1% for enzalutamide plus radium-223. After the initiation of a bone-protecting agent, the fracture risk in the enzalutamide arm decreased to 2.6% and to 2.7% in the enzalutamide plus radium-223 arm. Dr. Gillessen concluded that these data confirm the importance of bone-protecting agents when treating mCRPC with bone metastatic disease to prevent complications.''
What kind of research can u do to ensure that these pills are the real deal; counterfeiters are able to replicate authentic looking products, including packing that looks like was produced by astrellas? A while back 60 minutes had a great piece on this problem.
Yes that would be my only worry. I wouldn't want to give something that could be harmful or make the situation even worse. I've read a few bad things about indian pharmaceuticals and poor quality control. Add to this a middleman and who knows.
Would love to hear from anyone who has received quality enzalutamide from india?
The company has a program for people that qualify. Contact them direct and see. I have insurance so I didn’t qualify for the free drugs but my dad did.
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