The million dollar question

User

Posted 29 Jul 2024 at 15:34

Another Incurable here!

Heading to Reggio Calabria in September and then a mad 3 City trip to America in November.

Went to see Bruce Springsteen at Wembley on Saturday, 23,000 steps was a lot for me, but a smile it put on my face!

User

Posted 29 Jul 2024 at 18:50

Hi linda

Yes,for now I'm on no treatment.

Regards Phil

User

Posted 30 Jul 2024 at 11:00

Went to see Bruce Springsteen at Wembley on Saturday, 23,000 steps was a lot for me, but a smile it put on my face!

WOW , 23,000 steps Awesome… And the holidays sound brill too .

Yes,for now I'm on no treatment.

Does that mean you’ve finished the HT as well Phil ? And no steroids either ?

Phil

User

Posted 30 Jul 2024 at 13:01

Hi Phil

Yes I'm still on the 3 monthly prostap injection,I'm slowly decreasing the steroids tablets so should be totally off them in a few weeks.

Regards Phil

User

Posted 16 Aug 2024 at 08:00

Hi all

Update time,had my first chemist appointment and blood test result yesterday since finishing my 10 rounds of chemo, unfortunately my PSA has risen from 9 to 11,the chemist did not seem to concerned she said that this was not unusual with Docetaxel and we will wait and see the results of the scan which I'm having in a few weeks,I'd like to hear anybody's views on this PSA rise,I thought that after 6 months of chemo that my PSA would not start to rise so quickly after finishing my treatment,onco appointment end of September.

Regards Phil.

User

Posted 16 Aug 2024 at 08:44

Hi Phil

Sorry to see your PSA has risen, after completing your docetaxel treatment.

Sorry no advice, just sending you my good wishes and hope your scans show things are stable.

Mrs MAS

User

Posted 16 Aug 2024 at 08:56

Hi Mrs Mas

Thanks for that,I've read Dr Google he says words like PSA bounce and flare I'm hoping it's just a blip but next months scan results and another blood test will be the one,I hate living month by month waiting for results.

Regards Phil

User

Posted 16 Aug 2024 at 10:11

Hi Phil. I can imagine the worry about another rise in PSA . Hopefully it will settle down next time. I’ve have heard it can bounce around during and after chemo.
The wait for results is so hard to do. I think people think you just forget about it for a while but you don’t do you.

Also my Onco does seem to use the scans as much as the PSA as an indication of progress or not.

Best of luck Phil. Thinking of you 👍

Phil

User

Posted 16 Aug 2024 at 13:55

Hiya Phil we all seem to run our lives one PSA result to the next, so best of luck and keep fighting, cheers

User

Posted 16 Aug 2024 at 15:59

Hi airyarris

Never a true word said

Cheers phil

User

Posted 16 Aug 2024 at 19:58

Keep at it Phil. You humble us all with your guts and stoicism. I reckon it’s a blip. Set a target Always set a target to look forwards to.

User

Posted 17 Aug 2024 at 08:24

Cheers Chris

I rang the specialist nurse yesterday,there great,we spoke about my blood test results which are slightly different to what I mentioned,last month it was 9.87 this week's was 10.6,we spoke about how small the rise was,about PSA bounce,waiting for scan results and how Docetaxel is still doing its job 4 weeks after my last session,it put my mind at ease and put things into perspective,I'd recommend anybody to ring them if your unsure .

Regards Phil

User

Posted 27 Aug 2024 at 11:01

Hi Phil.

Good to see you’re using the specialist nurses, they are so helpful and will look into stuff for you if you need.

They are a good sounding board and can help to put things into perspective.

How are you feeling in yourself now? Are you slowly beginning to get your old self back ?

Phil

User

Posted 28 Aug 2024 at 09:22

Hi Phil

I ain't to bad almost feel normal,few aches here and there but only when I do to much(which is every day!)CT scan tomorrow will see the results at next onco appointment the end of September.

Vegas and New York in 2 weeks time so really going to let my hair down there.

How are you Phil?how you coping with chemo are they thinking of giving you the 10 cycles like they did with me?

Best wishes Phil

User

Posted 28 Aug 2024 at 10:23

That’s brilliant that you’re starting to feel ‘almost’ normal again. I’m looking forward to that happening. Nerce wracking time waiting till end of September for the Ct scan results. But you’ll be too busy on your holibobs to think about crap stuff. I’m right jealous as both those places are on our list. Obviously I’ll have everything crossed for your results and hopefully you’ll get ages before anything starts off again.

We went to Finland in Jan ‘18 a few days after my first bone scan and a week after diagnosis. I asked them not to phone me till we got back. I never thought about the PCa the whole time but unfortunately the missus was a bag of nerves. So we’re all different. Hoping you will put it all to the back of your minds.

We might book an early spring to Boston then up to Maine as we missed the wedding this month due to my flying ban. One of my BA companion vouchers runs out in May so will try to use that up.

I’ve had a rough time after my last chemo , which was my 5th. Very tired, awful metal mouth and really bloated stomach. Taking some meds for the mouth and stomach and they’ve both eased off last couple of days. Energy levels a bit better too. Next chemo got to drink cold stuff to help with the taste buds and I’m learning to eat less and a bit more healthier 😳…

I was lucky my Onco arranged a CT and Bone scan after my 3rd session. He tells me that the chemo is working on the bone mets, so that’s good. PSA going down too.
I have an appointment to see him f2f on the 10th Sept so hopefully we’ll carry on with the chemo for the full 10 sessions.

Have a brilliant holiday and good news from your Onco on your return. 👍

Cheers

Phil

User

Posted 28 Aug 2024 at 18:08

All the best ti both of you, Phil and Phil….and have a great holiday Phil😊

Holidays really help in keeping you mind off thinking about PCa.

Derek

User

Posted 29 Aug 2024 at 08:02

Thanks decho and phi.

Will update thread after next appointment.

Phil

User

Posted 27 Sep 2024 at 09:27

Hi all

Update time....well 2 months after finishing 10 cycles and 6 months of Docetaxel chemo PSA is on the rise (20) CT scan not to bad,no lymph node involvement but showing signs on my ribs,strange cause no issue with ribs aching seems to be more neck and shoulders,pet scan being arranged lit 177 & rad 223 being mentioned we will see what the scan results say.

QOL not to bad, managed to get to Las Vegas and New York what a place.will keep you updated.

Take care all Phil.

User

Posted 27 Sep 2024 at 09:36

Hi Phil,

Thanks for posting your update, I've been thinking about you.

Hope you had a super time gallavanting!

Pity your PSA is going up again, but glad your scans don't sound too bad.

Is it Leutiutuim you're looking at next?

My Allan has just had cycle 2 of cabazitaxel and is suffering.

I had a look at leutiutuim as well, it's fairly costly so will have to consider further.

All the best

Melissa x

Mrs MAS

User

Posted 27 Sep 2024 at 09:56

Hi Phil. Really sorry to hear the PSA is rising again and some more mets showing up . I suspect as my consultant told me they will use the scans now for determining more treatment and not so much the PSA. Hoping they get your new scans booked in soon as I know the waiting is a nightmare when all you want to do is know what’s going to be happening. I’m hoping to talk to my consultant soon as one of my bone profile results wasn’t so good this week. Might indicate chemo resistant mets.

Glad you had a great holiday. Hoping I can get out to see those places some time.

Will be thinking of you mate. Please keep us posted when you’re up to it 👍

Cheers

Phil

User

Posted 27 Sep 2024 at 10:07

Hi both

Thanks for your thoughts,one is self funded the other is NhS I forget which one,cabazitaxel is still in reserve.

I'll cross that bridge when the pet scan results come in.

Cheers Phil

User

Posted 27 Sep 2024 at 12:55

Sorry to hear your news, best of luck with the results, curious how you coped with long haul flights, for me 41/2 hours to Tenerife is more than enough takes me a couple of days to recover

Look after yourselves

Daveh

User

Posted 27 Sep 2024 at 15:34

Hi Phil - well done for getting to New York and Las Vegas! Hope the scan is OK and you can plan further trips - we all need things to look forward to 😊Good luck!

User

Posted 27 Sep 2024 at 20:53

Hi Phil , as ever sorry to hear this news. My fingers are always crossed for you and your courage is totally admirable. Best wishes

User

Posted 28 Sep 2024 at 09:15

Hi Phil 🤞 and you can look forward to another holiday 😎

All the best

Jac and Al

User

Posted 21 Nov 2024 at 22:10

Hi guys

Update time....Pet scan results in not good news cancer is on the move,PSA upto 59,all bloods across the board look ok.QOL still pretty good.

Being referred to Royal Marsden for phone consultation for possible course of lutetium-177 and possible clinical trails on NHS and cabazitaxel on the back burner.

Does anybody know a ball park figure for a 6 cycle course of lutetium-177 will cost as I will have to self fund?I've saw a figure of 20 grand...does that sound about right?

Regards Phil

User

Posted 21 Nov 2024 at 22:32

Phil, no personal experience but if I understand it correctly it is £20k per dose and you need 6 doses. That price excluded Vat ,but not sure how vat works with medical items. A research professor was taking to me a few weeks ago and I " think" he mentioned £140k for the course.

Thanks Chris

User

Posted 22 Nov 2024 at 08:07

Hi Chris,thanks for your response

I thought it maybe that much,I was hoping that it was 20k for the course.

Can I justify spending 120k on treatment that will extend my life by 12 months and leave my wife with nothing,I think not.Lets see what the phone consultation will say in a few weeks.

Regards Phil

User

Posted 22 Nov 2024 at 08:20

Sorry to hear that Phil. It's outrageous that there is a treatment available but you have to pay such a ridiculous sum for it. Have you considered crowdfunding (if that is the right term) or similar? I'm forever being bombarded with "just giving" requests on social media, from people trying to raise cash for some cause or other. PCUK might even be able to help you set something up? I'm sure there are plenty of people on here who would be willing to help advertise the effort. I certainly would. Stay strong mate 👍

Ian.

User

Posted 22 Nov 2024 at 08:49

Originally Posted by: Online Community Member

Can I justify spending 120k on treatment that will extend my life by 12 months and leave my wife with nothing,I think not.

What a bloody awful position to be in. My heart goes out to you both.

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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