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The million dollar question

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User
Posted 22 Nov 2024 at 10:12

Hi Phil. I’m so sorry to hear the PCa is still moving after all the chemo you had. It must be such a blow. Really feel for you, especially as I think I am following you on… 


Dont know about Lutetium 177 at all. They’re talking Radium 223 for me next in the new year. I suppose it depends on where the locations of the spread is. Mine is mainly my spine. 


Can you not move to NHS for your next treatment? Seems so unfair you have to fund it yourself. I agree about crowdfunding. We would all help out I’m sure.  


Really glad you are feeling ok in yourself and that QoL is still good. That’s something they ask me every time. 


I couldn’t sleep last night after reading your post. As I’m kinda following you along if you ever need to chat , private or on here I’m good with that. I understand the emotional turmoil this all brings , as I suspect most on here do too. 


Take care ,


Phil

User
Posted 22 Nov 2024 at 12:54

Hi Phil and thanks for your thoughts 


There is NHS options on the table,radium 223 cabazitaxel my oncologist is also asking about any clinical trials that may be available, lutetium 133 should be available for you Phil ask your oncology team about it but it can be costly,I should be getting info in the next few weeks regarding this and I'll post when I know.


All avenues have to be explored 


Regards Phil 

User
Posted 22 Nov 2024 at 13:33
Hi Phil
My thoughts are with you on what is a terrible position to be in after all the treatment you have been through. I have been following your story and just hope there is another treatment you can get on the NHS that will keep you going as long as possible. Fingers crossed for you. You have lots of moral support on here 😊
User
Posted 22 Nov 2024 at 14:10
Some NHS trusts appear to be funding it for some patients eg
https://www.uhs.nhs.uk/Media/UHS-website-2019/Patientinformation/Cancercare/Lutetium-177-prostate-specific-membrane-antigen-PSMA-therapy-2881-PIL.pdf
User
Posted 22 Nov 2024 at 15:45

Yes they are,I think my group (NHS Dudley & Wolverhampton)are in talks about it but unfortunately time isn't on my side to wait and see.

User
Posted 22 Nov 2024 at 16:01
Don’t know what to say Phil. All I want to do is send my strength and good wishes to you. I can only imagine and will face it myself sooner or later. You’re a strong stoic man and my thoughts are with you.
User
Posted 22 Nov 2024 at 19:31

Phil1969,


Really sorry to hear this news.  Take good care of yourself.


JedSee.

User
Posted 22 Nov 2024 at 20:06

Sorry to hear this Phil. 


Kev.

User
Posted 22 Nov 2024 at 23:30

Quantity of life vs Quality of life is a debate which needs to be had. Lu177 may extend life by a few months possibly a year, but it isn't a cure. NICE tends to go with a figure of £20k per year of life, as worthy of spending. Of course they aren't talking about their own lives, they are talking about an anonymous statistic of a life, i.e. proletarian lives.


When it is your own life, the maths may look different. In reality, unless you are a multimillionaire £120k for a short extension of life is not worth it; better to spend some of that improving the quality of what life you have left, or perhaps more importantly leaving some quality of life for your wife and family after you've gone.


 

Dave

User
Posted 23 Nov 2024 at 07:30

Hi Phil,


I am SO sorry to hear your news Phil, after everything you’ve been through and now you’re faced with yet more gruelling treatment. All I can do is send you all my strength and thoughts that you find something that will help..


Good Luck,


Derel

User
Posted 23 Nov 2024 at 10:30

Hi Dave 


I think you've hit the nail on the head with your comments and I need to make some important decisions in the next few weeks,but I will have the consultation with these guys at Royal Marsden and see what they have to say ie cost, extension of life,amount of cycles needed etc.


Regards Phil 

User
Posted 23 Nov 2024 at 12:42
New to this thread but full of admiration for your strength and resilience through such challenging circumstances.

Sending love and wishies for the very best possible outcome.

Tony
User
Posted 23 Nov 2024 at 15:10

Well I wish you the best of luck at the consultation. Trials may be a possibility. There are two motivations for a trial 1: it may be a miracle cure for you. 2: it will advance science for future patients. 


Reason 2 is the reason the scientists are conducting a trial; reason 1 may be a lucky outcome for you. The trial treatment may have worse side effects than the standard treatment. The trial treatment outcome may be no better than the standard treatment (it may be worse, but ethics requires it should not be trialled unless it has a high chance of being at least as effective as the current standard treatment).


Both reasons are valid, but if your motivation is reason 1, take the same attitude to it as you would buying a lottery ticket, you might get lucky, but don't bet your life on it. The good news is that if you enter the medical trial lottery, your loss (or win) will help someone else in the future (reason 2).

Dave

User
Posted 23 Nov 2024 at 23:08

Hi Phil 


If it's not possible to get on a clinical trial here, then it's cheaper to go overseas if your able to travel. Istanbul and Baku in Europe offer Lu177 / Pluvicto plus Actinium 225 for considerably less than the UK. Scans are also much cheaper. Germany appears to charge in Euros what we pay in pounds, some German hospitals have been offering since 2016, so are much more experienced. Further afield, Fortis Hospital in Delhi, Dr. Sen, is worth contacting as are hospitals in Australia. J591 is a Actinium treatment available in Australia in Perth. Good luck.

User
Posted 24 Nov 2024 at 11:59

Hi polo 


Thanks for response but I will not be leaving these shores for treatment.


Regards Phil 

User
Posted 26 Nov 2024 at 15:24

Grim news and situation mate.


For what it's worth I say "crowdunding" route.


With 66m people in the country, £120k is achievable.


All it would take is some famous person to get on board on socials and you'd be flying.


Even if you don't reach the full amount, any money raised is money still in your pot.


I'd be happy to get this going for you if you want

User
Posted 26 Nov 2024 at 15:45
Sorry to see this Phil. I know it’s not for everyone but I’m in a Facebook group which uses alternative medicines either alone or along side standard treatments. We don’t currently follow this pathway but when other treatments were no longer possible we would definitely be giving it a go. Wishing you the very best of luck with your appointment x
User
Posted 27 Nov 2024 at 00:22

Hi Phil,


My OH had to stop chemotherapy after only 3 doses back in July. We have our first appointment with Oncologist on Monday since September when he decided not to try a different chemo or Radium223. He looks really well and amazingly feels very fit at the moment all things considered.


Mentally it’s a whole different story however, waiting for the blood test Thursday, then to see on Monday what PSA is. It is just terrifying. 

I wish you all the best xxx 

Some days you just have to create your own sunshine...... 

User
Posted 27 Nov 2024 at 10:35

Thank you all so much for your messages and offers,I have to take every step as it comes,will wait for phone consultation with Royal Marsden,I'm also asking questions about IFR (independent funding request) my oncologist is putting me forward for clinical trials and theres still the option of cabazitaxel and radium,my next oncology appointment is end of January when decisions will have to have been made.


I hope I can keep well until then,I'm not to bad at moment phisically but mentally it's challenging as some of you know to well.


It is very annoying, disappointing and frustrating that there's treatment in this country that is out of reach because of cost,I've paid my taxes and NI for 40 years!!!! I'm sorry I'm being bitter..


All the best regards Phil 


 


 

User
Posted 27 Nov 2024 at 11:25

Hi Phil. You’re not being bitter. It doesn’t make sense when available treatment is withheld due to financial constraints. And to be honest how on earth can Lutetium 177 cost so much 🤷‍♂️… 


Im not sure where your PCa has moved onto but you mentioned rib pain taking you to A&E. So presuming that’s one place. I also presume that’s why they mentioned Radium 223 to you as it targets bone mets only. Sounds like that’s my next step too.


Hope you can get some answers and Treatment direction very soon . 


Good to hear you’re staying ok physically. And I really understand the mental issues. I was in the middle of some painting this morning and I felt myself choke up 😳. It just came from nowhere… I just want to book up a holiday that I know I’ll be able to go on 🤦🏼


Thinking of you 👍


Phil

 
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