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Further Treatment this year?

User
Posted 11 Jan 2020 at 03:21

My PSA continues to rise at a low but increasing pace. At 2.02 now, It will go well beyond my nadir of 0.05, + 2 by the time I have my next PSA test in another three months time which will signify Biochemical failure with local occurrence for me.  When My GP saw the result of my PSA test this week he left a message on my answerphone  to make an appointment with him and coincidentally I had a telephone appointment with UCLH this week.  This was with a specialist nurse and I knew that as before a form of HT would be suggested.  I said once again that I didn't want to resort to HT again, at this point at least, unless it was for a short period as part of another treatment.  Quite understandably, the nurse was not able to advise on certain advanced treatments, some of which are only available abroad but there are doctors at UCLH who are aware of these.  As further HIFU had already been ruled out due to some calcification in my Prostate and the small tumour being close to my rectum,  I asked whether TULSA PRO might be suitable or Focal Laser Ablation (FLA).  If not would SpectraCures P18 be an option?  I note that the Chief Investigator for the UK part of the study is the lady Professor who administered my HIFU so should be well placed to provide an answer.  The aforementioned nurse said she would get my case reviewed by the MDT and will get back to me.  So hopefully, I can then discuss with my GP the best way forward. 


There were the usual admin errors.  I had a letter asking me to attend UCLH at Westmoreland Street in London for my appointment and on my querying this because my simple checks are normally over the phone (I am 200+ miles from London), they said I was right and that it would be a telephone appointment.  They then sent a letter confirming this and saying they would contact me on my mobile phone number.  Subsequent to this I got two telephone reminders of my appointment at WESTMORELAND STREET!  Well in the event, the call did come through and pretty close to the appointed time but to my home phone rather than to my Mobile number as previously advised, so as well I was at home and not relying on my Mobile somewhere else. https://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-trial-looking-at-a-new-way-of-giving-photodynamic-therapy-for-prostate-cancer-spectracure-p18 This refers to a Phase 1 trial whereas they seem to be on phase 2 abroad I believe.

Edited by member 11 Jan 2020 at 11:07  | Reason: Not specified

Barry
User
Posted 13 Jan 2020 at 18:05
Peter,

Self preservation is strong motivation! But things I have researched/experienced I have posted so others may consider if they wish. It has assumed additional importance over recent years as I have become a full time carer and need to be up to the task.

As regards my Profile/Bio, for some reason quite a time ago, following one of the forum updates, all the information I had originally set out in a readable form became rolled up into one paragraph making it very difficult to read. I have meant to rewrite this for quite some time but will now do so shortly. I will also try to retrieve a post and a link to it of my experience of my treatment abroad, which I posted in the forum before it was radically changed - (for the worse some of us feel).
Barry
User
Posted 14 Jan 2020 at 18:13
If I go to my Account, View Profile , Statistics, Thanks Received, there is an accumulative total of 866. However, for more than 2 years now there has never been an indication of ANY thanks at the foot of ANY of my posts viewed via Chrome or Firefox. Others may see but certainly not me. This does not concern me in the slightest but that's an anomaly.
Barry
User
Posted 11 Jan 2020 at 03:21

My PSA continues to rise at a low but increasing pace. At 2.02 now, It will go well beyond my nadir of 0.05, + 2 by the time I have my next PSA test in another three months time which will signify Biochemical failure with local occurrence for me.  When My GP saw the result of my PSA test this week he left a message on my answerphone  to make an appointment with him and coincidentally I had a telephone appointment with UCLH this week.  This was with a specialist nurse and I knew that as before a form of HT would be suggested.  I said once again that I didn't want to resort to HT again, at this point at least, unless it was for a short period as part of another treatment.  Quite understandably, the nurse was not able to advise on certain advanced treatments, some of which are only available abroad but there are doctors at UCLH who are aware of these.  As further HIFU had already been ruled out due to some calcification in my Prostate and the small tumour being close to my rectum,  I asked whether TULSA PRO might be suitable or Focal Laser Ablation (FLA).  If not would SpectraCures P18 be an option?  I note that the Chief Investigator for the UK part of the study is the lady Professor who administered my HIFU so should be well placed to provide an answer.  The aforementioned nurse said she would get my case reviewed by the MDT and will get back to me.  So hopefully, I can then discuss with my GP the best way forward. 


There were the usual admin errors.  I had a letter asking me to attend UCLH at Westmoreland Street in London for my appointment and on my querying this because my simple checks are normally over the phone (I am 200+ miles from London), they said I was right and that it would be a telephone appointment.  They then sent a letter confirming this and saying they would contact me on my mobile phone number.  Subsequent to this I got two telephone reminders of my appointment at WESTMORELAND STREET!  Well in the event, the call did come through and pretty close to the appointed time but to my home phone rather than to my Mobile number as previously advised, so as well I was at home and not relying on my Mobile somewhere else. https://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-trial-looking-at-a-new-way-of-giving-photodynamic-therapy-for-prostate-cancer-spectracure-p18 This refers to a Phase 1 trial whereas they seem to be on phase 2 abroad I believe.

Edited by member 11 Jan 2020 at 11:07  | Reason: Not specified

Barry
User
Posted 11 Jan 2020 at 10:26

As ever you are up to date with new treatments Barry. I looked up the ones you listed, great to see new ideas coming along.


Hope the MDT can come up with something suitable for you that isn’t just long term HT.


 

Ido4

User
Posted 17 Jan 2020 at 00:21

Hi Clare


Can understand that completely having had one in for 15 days. I got used to it after a bit and the clip lock things for the leg made a huge difference. I had one on each thigh so I could alternate when one side got sore. Switching around and emptying a pain for a bit. 


Hope everything goes ok


cheers


TG

User
Posted 12 Feb 2020 at 00:11

Thank you for your kind thoughts friends.


TechGuy


I did wonder about Proton Beam as there is virtually no damage to cells after the targeted tumour although some small damage building up to it to it. (The Bragg Peak). However, I have already had 30 x 2 gy of IMRT plus 6 x 3 gy of Carbon ions (where the latter pack more punch than Protons) directed at my Prostate and I doubt very much whether anybody will give me more RT or Hadron Treatment to the Prostate. The last MRI I had revealed a tumour thought to be the size of a grain of rice and before doing the subsequent template biopsy just over a year ago the surgeon told me he would do well to 'hit' it. In the event he did and the following PSA was the only one since that that has not produced an increase in PSA. I reasoned that the fall could have been because part of the tumour had been removed in a biopsy core. I thought if the probe used to remove the core had been rather larger, perhaps the whole of the tumour might have been 'grabbed' but perhaps no suitable instrument is available or there are other reasons why this is not feasible. The tumour is very close to my rectum, "there's the rub".


Notwithstanding the foregoing, if nothing additional shows up in my forthcoming MRI, when I send my Scan to Heidelberg to inquire about TULSA-PRO, I will ask whether they would treat with more Carbon ions or Protons. They have more experience than any facility in London and have a synchrotron to give either form of Hadron Therapy which the UK lacks as here :- https://www.youtube.com/watch?v=LeApaY7ctMo


I will only opt for treatment when I have obtained opinions on and assessed all that might be suitable.

Edited by member 12 Feb 2020 at 00:14  | Reason: to highlight link

Barry
Show Most Thanked Posts
User
Posted 11 Jan 2020 at 10:26

As ever you are up to date with new treatments Barry. I looked up the ones you listed, great to see new ideas coming along.


Hope the MDT can come up with something suitable for you that isn’t just long term HT.


 

Ido4

User
Posted 13 Jan 2020 at 16:21

Hi Barry,


Your pursuit of new treatments for over 12 years and from over 200 miles from London is an example to us all.


I'm not sure why, it could be it lost its formatting, but your profile is one big paragraph making it hard to take in.   It's an exemplary read for anyone looking out for new treatments.


All the best,
Peter

User
Posted 13 Jan 2020 at 16:56
Ido4,

Thank you for your comments.
Barry
User
Posted 13 Jan 2020 at 18:05
Peter,

Self preservation is strong motivation! But things I have researched/experienced I have posted so others may consider if they wish. It has assumed additional importance over recent years as I have become a full time carer and need to be up to the task.

As regards my Profile/Bio, for some reason quite a time ago, following one of the forum updates, all the information I had originally set out in a readable form became rolled up into one paragraph making it very difficult to read. I have meant to rewrite this for quite some time but will now do so shortly. I will also try to retrieve a post and a link to it of my experience of my treatment abroad, which I posted in the forum before it was radically changed - (for the worse some of us feel).
Barry
User
Posted 13 Jan 2020 at 21:14

Yes self-preservation.  Some people are better at finding and then having the initiative and ability, perhaps courage too, of getting things done.


On the formatting.  Mine lost its paragraphs, when I did a big edit in another app, and I went through it clicking return at where they should be. It didn't take too long.

User
Posted 14 Jan 2020 at 07:19

Originally Posted by: Online Community Member


Yes self-preservation.  Some people are better at finding and then having the initiative and ability, perhaps courage too, of getting things done.


On the formatting.  Mine lost its paragraphs, when I did a big edit in another app, and I went through it clicking return at where they should be. It didn't take too long.



My profile was duplicated too.


A recent post was triplicated, and each time I edited it, I could not delete the previous comments.


Why PC UK persist with this home-grown, second-rate, bulletin board format when other much better BBs are available off the shelf, I will never know.


Cheers, John.

User
Posted 14 Jan 2020 at 08:42
Money
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 14 Jan 2020 at 10:41
A friend runs an excellent wine enthusiasts page called www.wine-pages.com.

There is a section called ‘forum’ which is a bulletin board, and he has just told me he paid $160 plus VAT for the bulletin board licence a couple of years ago.

Where did fifty grand come from?

Cheers, John.
User
Posted 14 Jan 2020 at 13:20
For those who were here before his passing, there was an outstanding member by the name of Alister, forum name Alathays or similar, (Lyn will know). He was so put out by the inadequacy of the reformatted forum and it's continuing bugs that he started his own site and some people joined him. I was tempted but felt I would remain loyal to this forum and hoped the bugs would be sorted but a few years have passed now and some are still with us. There is another one on my account. I know that people have thanked me on occasion in the last couple of years but it has never shown once at the end of my post with a notation of thanked 1 time, 2, or whatever number. This does not concern me whatsoever, I don't post to receive thanks. (Indeed I don't press a button to thank members but more personally write my thanks mostly where appropriate.) I just mention it because it illustrates another unresolved foible. Members point these out from time to time but these persist.
Barry
User
Posted 14 Jan 2020 at 16:50

There was a problem with thanks not showing at all to the post writer. 


They did a fix around a year ago.  Now if you look at your own post you should get a green box around it if it's been thanked.  Although it doesn't show the number of thanks.   Other people looking at your post can see the number.


You can see how many thanked you by looking on your profile but you don't know who thanked you.


Thanks have a number of uses not all good, they can be used for bullying.


I've done websites as a volunteer for local charities for 20 years and found bulletin boards a bit of a law unto themselves.  The perfect one is very elusive and after trying a few I now say use a secret Facebook group if you want a bulletin board.


This may have a few glitches but it seems pretty good and quite fast.

User
Posted 14 Jan 2020 at 18:13
If I go to my Account, View Profile , Statistics, Thanks Received, there is an accumulative total of 866. However, for more than 2 years now there has never been an indication of ANY thanks at the foot of ANY of my posts viewed via Chrome or Firefox. Others may see but certainly not me. This does not concern me in the slightest but that's an anomaly.
Barry
User
Posted 14 Jan 2020 at 23:56

Barry you are the most amazing researcher ever and the biggest help we could have received in the three years since diagnosis. I have clicked thanks on every post and hope you know that!


interesting to me that the photodynamic therapy news hit the press the day after A’s initial diagnosis in Dec 2016. The lead is his monitoring professor too.


iI like reading about developments are you are the absolute best at providing updates. 
Thank you

User
Posted 14 Jan 2020 at 23:59

Originally Posted by: Online Community Member
If I go to my Account, View Profile , Statistics, Thanks Received, there is an accumulative total of 866. However, for more than 2 years now there has never been an indication of ANY thanks at the foot of ANY of my posts viewed via Chrome or Firefox. Others may see but certainly not me. This does not concern me in the slightest but that's an anomaly.


 


Fascinating - I just assumed I had never been thanked but as you say, I can often see thanks at the bottom of your posts. 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 15 Jan 2020 at 13:36

Bollinge 


prob reason of keeping in houses are driven by IT resource available v security. Easy to outsource these things but risks of going cheap mean it’s for a reason. Ie what backend is being used plus how secure it and and ongoing data protection measures taken to ensure a duty of care for all plus compliance/audit stuff (confidentiality, integrity and availability)? For my sins I spent over decade doing this kind of work across all sectors. Costs can spiral putting in new systems and ensuring they are fully maintained over time. Plus employing half descent staff etc

User
Posted 15 Jan 2020 at 13:39

Great research Barry. The UCLH guys are pretty epic. I’ve been following the photodynamic therapy research since the mid 90s. It’s really come a long way. Immunotherapy also making great strides...hopefully not before too long there will be some more effective management protocols for PCa. They are coming but 10-15years out from what I hear from boots on the ground.

User
Posted 15 Jan 2020 at 19:05

As regards surgery and radiation, each in it's several forms, there have been improvements over recent years which for suitable men provide the most successful radical way of dealing with PCa, albeit often with varying degrees of side effects. Some men are not suitable for surgery or radiation or prefer a focal treatment with less extensive side effects which may be successful or defer the day when they need more radical treatment. The other time where focal therapy can be helpful is as a salvage treatment. There are a few other treatments that fall outside this category such as Irreversible Electroporation also referred to as 'Nanoknife'. The long term effects of these treatments have yet to be evaluated and compared with the long established surgical and radiation procedures (which have also improved over the last decade especially). So anybody reading this should not consider any of the new treatment options are better or necessarily as successful as surgery and radiation treatment but may prove a good answer in certain circumstances. It is to be hoped that in the not too distant future a way of treating men with PCa will be found that avoids all this brutal radical treatment, even some of the effects of some systemic treatments. One leading Urologist has speculated that this might be facilitated by introducing a virus which would attack the cancer or carry something to it that would attack it. Meanwhile, the clinicians have to work largely with the tools they have, sometimes using them in combination.


Perhaps even more important is the need to be able to distinguish more reliably between those men that need treatment from those where treatment can be deferred. Patient profiling may help and other ways are being explored. There are many trials looking at various aspects of PCa in many countries, some multinational but there is still a long way to go and so much to be found out.


I was very disappointed when Clare's husband found out his FLA treatment for early and low Gleason grade PCa proved unsuccessful both for him and potentially for me. We know that all treatments have failures but he seemed such a good candidate for FLA and I will look at this very carefully before adopting this option.  Meanwhile, I will have to see what UCLH have to say about other options.


 


 

Edited by member 15 Jan 2020 at 19:35  | Reason: Not specified

Barry
User
Posted 16 Jan 2020 at 01:01
Thanks Barry

We are still in talks re next steps for A’s reoccurrence and really have no regrets re trying the FLA which ‘kicked the can down the road’ allowing a fab 3 years before needing a new plan.

The focal surgeon is supportive of another focal treatment and says A’s prostate is in very good shape given he had a big ablation so although a reoccurrence Florida did a very neat job!He says removal will still be on the table if another focal fails.

So on offer is a focal HIFU ( BUPA approved) in London, a repeat FLA in Florida ( Fri is phone conference here) and thanks to BArry research we have about the clinical trial as it’s our prof leading that one too... unlikely to get a yes there but if you don’t ask you won’t know.

Big new learn was NeuroSafe and if A does end up having a removal doing it with a NeuroSafe procedure is definitely what we would want.

So again a big thank you to the forum members esp Barry for the constant flow of useful intel.

Our prof says she can get it with a focal HIFU and no fissures on her watch.( 1/500 risk quoted)

Decisions, decisions. PCa is not good for the indecisive!

Thanks all
Clare
User
Posted 16 Jan 2020 at 11:29

Clare


Retzius RARP + NeuroSafe sold it for me. And on weeks 7 has done its job coupled with the safe hands of the Prof whocannotbenamedonhere. I probably would have gone focal with the UCLH crew if it had been a viable option. But pleased I hit the trigger and got it all done end of November. 


Best of luck and keep us all posted


TG

User
Posted 16 Jan 2020 at 23:54

Thank you TG. Will continue to document A’s journey. Three years since his diagnosis and it’s a strange one to not actually have any symptoms of illness, working full time, travelling. Football mad, stripping the daughters new house for her, sons wedding in France, masses of family here in the holidays but knowing something is going awry And this time next week he will probably have another catheter in post procedure and that having the catheter in continues to be the bit that scares him the most! 

User
Posted 17 Jan 2020 at 00:21

Hi Clare


Can understand that completely having had one in for 15 days. I got used to it after a bit and the clip lock things for the leg made a huge difference. I had one on each thigh so I could alternate when one side got sore. Switching around and emptying a pain for a bit. 


Hope everything goes ok


cheers


TG

User
Posted 17 Jan 2020 at 17:57

Interesting, apparently no bag in the day with this catheter planned for next week. A tap and he goes to the loo!


a bag for night though. That’s different to last time!

User
Posted 11 Feb 2020 at 00:25
True to her word, the nurse I spoke with in my last telephone appointment with UCLH arranged for a senior Consultant to contact me. She was the person who gave me HIFU in 2015 and is Chief Investigator for the SpectraCures P18 Trial and I rather hoped she would say I would be a suitable candidate for this. Unfortunately, the previous treatment I had precludes me taking part in this trial. She then said something that came as a great surprise. She said that if an MRI showed my cancer was confined to my Prostate and had not extended to the seminal vesicles, she would give me HIFU again! This was most surprising because the top Focal expert at UCLH had previously told me a year or so ago that they would not do HIFU on me because of the position of the tumour and due to calcification making it difficult to focus the HIFU instrument. Indeed, he said I had already had two major treatments to the Prostate and "we would not treat it further radically". So a volt-face there, although I was cautioned that there would be a greater risk of a Fistula forming with further HIFU.

I accepted an MRI and will see what this shows. I don't believe TULSA-PRO is done at UCLH but if I get my forthcoming MRI scan put on a disc I could send it to a contact I had in Heidelberg where they participated in a trial (now closed I think) of this form of ultrasound treatment. I would then have an opinion on whether this might be a better option than HIFU in London, although it would mean going to one of the treatment facilities in Germany or Finland. Another possibility is to have Focal Laser Ablation in the USA which I think is less proven than ultrasound albeit with less collateral damage and going to the USA would cause other problems for me, It may be that I have to settle for HT but only if there is no other viable alternative. The struggle continues!
Barry
User
Posted 11 Feb 2020 at 09:58

More great reading Barry, yours is a story to follow.

User
Posted 11 Feb 2020 at 11:39

Thanks for update, you are a trailblazer. I hope the scan shows you can have further radical treatment provided the risks are acceptable.


 

Ido4

User
Posted 11 Feb 2020 at 14:39

I guess Proton Beam not in scope? The Rutherford centres look interesting but not cheap. I looked at it but decided probably not that relevant as mine very much multi focal. The precision is interesting although I realise there are sceptics out there.

User
Posted 11 Feb 2020 at 15:11
All sounds very interesting Barry. I know you don’t want the systemic route like myself if there are other options. Good luck

If life gives you lemons , then make lemonade
User
Posted 12 Feb 2020 at 00:11

Thank you for your kind thoughts friends.


TechGuy


I did wonder about Proton Beam as there is virtually no damage to cells after the targeted tumour although some small damage building up to it to it. (The Bragg Peak). However, I have already had 30 x 2 gy of IMRT plus 6 x 3 gy of Carbon ions (where the latter pack more punch than Protons) directed at my Prostate and I doubt very much whether anybody will give me more RT or Hadron Treatment to the Prostate. The last MRI I had revealed a tumour thought to be the size of a grain of rice and before doing the subsequent template biopsy just over a year ago the surgeon told me he would do well to 'hit' it. In the event he did and the following PSA was the only one since that that has not produced an increase in PSA. I reasoned that the fall could have been because part of the tumour had been removed in a biopsy core. I thought if the probe used to remove the core had been rather larger, perhaps the whole of the tumour might have been 'grabbed' but perhaps no suitable instrument is available or there are other reasons why this is not feasible. The tumour is very close to my rectum, "there's the rub".


Notwithstanding the foregoing, if nothing additional shows up in my forthcoming MRI, when I send my Scan to Heidelberg to inquire about TULSA-PRO, I will ask whether they would treat with more Carbon ions or Protons. They have more experience than any facility in London and have a synchrotron to give either form of Hadron Therapy which the UK lacks as here :- https://www.youtube.com/watch?v=LeApaY7ctMo


I will only opt for treatment when I have obtained opinions on and assessed all that might be suitable.

Edited by member 12 Feb 2020 at 00:14  | Reason: to highlight link

Barry
User
Posted 12 Feb 2020 at 11:18

Hi Barry


Sounds like you have all bases covered. Would be pretty cool if they got it in biopsy core but as you say probably not big enough.


I know a chap that had ~9 prostate lesions  treated at Rutherford, Swansea with proton +spaceOAR. Seems to have had a good outcome thus far but I feel with the nature it the disease that more often than not it’s a game of catch up.


Best of luck with whichever path you choose and please keep us posted.


TG 


 

 
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