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Has RT Failed

User
Posted 06 Jan 2015 at 11:14
Hi

I have just checked my latest results online and the PSA has risen yet again to 0.63. I finished Salvage RT 6 months ago with a score of 0.05, 3 months later it was 0.2 and now 3 months after that it is now 0.63, giving me a doubling time of 1.8 months so do I take it that RT has failed me. I find it hard to interpret the figures due to the hormones I took (Casodex 150) for six months prior to and including RT and what effects it has had on the numbers, I assume the Casodex would have been out of my system at the 3 months check, if so then the figures now are a true reflection on what is going on, and I am destined to just trying to control rather than cure. I know that RT can keep working for approx 2 years but to me the outlook seems gloomy and I dread going back on the hormones, but I will if it keeps me alive. I will be seeing my Oncologist on Thursday and need to have my questions/game plan in place, so if anyone can let me have their thoughts it would be welcome, as at the moment I can't seem to get my head around it all and am finding it hard to process. I have always had a plan of action uptil now but now I am in uncharted waters and feeling out of my depth so any info good or bad may get my thought processes back on track

Thank you

Roy

User
Posted 15 Dec 2017 at 12:40
Hi Guys

I thought I would give an end of the year update as I have now finished my 6 cycles of Chemo and having a break until next year to let the side effects improve. The trend is still downwards so a positive note to end the year on.

26/07/2017 PSA 5.7

28/07/2017 Chemo#1

17/08/2017 PSA 7

22/08/2017 Chemo#2

07/09/2017 PSA 7.4

12/09/2017 Chemo#3

28//09/2017 PSA 4.5

03/10/2017 Chemo#4

19/10/2017 PSA 3.5

24/10/2017 Chemo#5

09/11/2017 PSA 2.5

14/11/2017 Chemo#6

14/12/2017 PSA 1.3

Wishing you all a very Merry Christmas and a Curative New Year

Roy

User
Posted 13 Nov 2018 at 11:44

Hi guys

Had my bloods taken yesterday and the latest PSA is 7.90, therefore no change from the previous one taken 7 weeks ago, so what to do now? is the question. I will be seeing my Onco on Thursday, watch this space.

 

Roy

User
Posted 06 Jan 2015 at 12:18

Hi Roy,

Sorry to hear about your latest PSA rise, My thoughts about HT are exactly the same as yours, not fun !!

I had a little dig around and found the below  , hope you find it helpful, it was published May last year.

Si

 

 

"As usual, we are confronted with a new contradiction. It has been believed that earl hormone therapy (ADT) in men with a biochemical recurrence (PSA only) would benefit from immediate ADT. A study released from the Harvard School of Public Health contradicts this assumption, but the study lacks follow up beyond 10 years.

They evaluated 2,012 men whose prostate cancer relapsed, those who delayed hormone treatment were no more likely to die over five and 10 years than those who started therapy immediately. “For both groups and both outcomes, the survival is very similar,” said Xabier Garcia-Alben, an epidemiologist at Harvard and a study author. The researchers used a 14,000-patient database from the University of California at San Francisco that tracks men with prostate cancer to assess the benefits of therapy.

The results were released yesterday and the actual data will be available for review at the up-coming American Society of Clinical Oncologists (ASCO) meeting.

In the study, 85.1 percent of men who started treatment immediately survived over five years, compared with 87.2 percent who delayed therapy. Over 10 years, 71.6 percent of men in both groups were alive. These numbers do not reflect a statistical difference.

William Oh, M.D. from Mount Sinai Hospital in New York said, “What this suggests is we probably pull the trigger on androgen deprivation therapy a little too soon,” Oh said in a telephone interview. “Nobody’s ever shown that starting right away makes any difference. The sooner you start it, the longer they’re on this therapy.”

I hope that the study will continue so that we can get a better understanding of an even longer time period. Prostate cancer takes many years to kill a man and the data from 15 and even 20 years might tell a different story"

 

Don't deny the diagnosis; try to defy the verdict
User
Posted 14 Jun 2016 at 23:16

Oh no! Hope the onco comes up with a great plan C

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 27 Jul 2017 at 15:18

And yet I got Enzo before having to have chemo but they won't give it to you until after chemo! As the cousins say, "go figure".

Docetaxel. If I hadn't contracted pneumonia I'd say it was well worth doing.

However, I did get pneumonia and the last 11 weeks have been the worst of my life.

If last November I'd have known what was going to happen then would I have gone ahead with it? Probably not, but this would have meant a shorter life span.

If I recover from the effects of pneumonia in the next few weeks then I'll probably have a different view.

Bottom line is, respect days 8 to 15 in each cycle when you are likely to be neutropenic and do your utmost to avoid any infection.

User
Posted 29 Sep 2017 at 10:26
Hi

Just an update. After my second Chemo and prior to my third my PSA rose again from 7 to 7.4 which showed an increase in doubling time, so to me something positive was happening. Well I have just seen my PSA results from yesterday and finally it's down to 4.5 so it's now going the right way let's hope it continues. I will me having my 4th Chemo on the 3rd of Oct so I will be two third through a period which I have found tough, but as they say "no pain no gain" so I am feeling a bit more positive than I was a few weeks ago.

All the best

Roy

User
Posted 22 Aug 2018 at 17:51
Sorry to read this Roy. As with everything PCa treatment seems to differ wherever you are. I’m not being checked again till January next year and my psa is expected to be 100+ with zero signs of spread. Because I’ve rejected scatter-gun RT four times now , HT hasn’t even been offered. All NICE protocol. They hardly going to offer hugely expensive drugs when no distant mets seen. However they will offer them if you have SRT and then still rising psa. But my Onco whispered in my ear I’d be a candidate for Abi and early Chemo , which even bypasses normal HT. Not even sure I’m interested in anything tbh having read many stories.

Hoping that you get the best treatment and I guess as ever you have to makes waves to be seen sometimes. All the best

If life gives you lemons , then make lemonade

User
Posted 06 Jan 2015 at 11:51

Hi Roy,

My approach would be (i) to hear what the oncologist has got to say - he is the expert  (ii) have up my sleeve a request for a further sensitive scan - Choline-PET / MRI (I think you had one of these before) (iii) the merits of additional therapy e.g. cryotherapy if some of the blighters are still there. I would even go so far as doing a little bit of research beforehand re. places that offer it.

Flexi

User
Posted 06 Jan 2015 at 13:52

Roy

Sorry to read of your PSA increase.

A post difficult to respond to but I have to type how I see your situation..

My thoughts on PET and all scans remain the same – certainly some can identity cells which others may not so they have in some instances a high value. However I can’t see how any scan can pick up cells already mutated but not yet at the mutation level that will show on scans. Thus I don’t see it that RT failed as such just some cells out of RT range were just at the early stages of mutations so couldn’t be picked up.

On a brighter note you take the view HT is control rather than cure – certainly a valid point. Against that is the thought HT can indeed kill cells off particularly at their early stages.

I guess I’m trying to say you could continue to have scans and find some way to see a particular hot spot off in the hope that’s it or accept that either now or at some point in the future longer term HT might be your best longer term control or even cure option?

Not the best of news so hopefully your consultant will have a better way forward.

Good luck

Ray

User
Posted 06 Jan 2015 at 18:25

Hi Roy,

 

Not the figure we hoped for as you have thrown everything at this & not held back on any treatments. With your R/T I would be asking the consultant why the psa actually went so low to begin with ( after the treatment ) . And does this guide the next step ? ( i.e. does this suggest that you hit all the right places in knocking psa down or not = still localised ?)

The choice of pursuing another scan to pinpoint a problem area must be with you of course but I'm one for using such facilities until proven to be unhelpful. I guess much will depend on your consultant & how adventurous they are.

User
Posted 08 Jan 2015 at 20:38

Hi Roy, thinking back to past members whose radical and salvage treatments had failed, I think the PSA reaching 2.0 tended to be the trigger point for discussing the commencement of long term or intermittent HT. Not so long ago there was quite a discussion on here when the onco had told Bri that HT wouldn't be introduced unless the PSA hit 20. My dad is currently around 1.6 and is reluctant to accept defeat until it reaches 10 although, who knows, my nerve might not hold out that long and I am impressed by the stories of people like George & TopGun whose use of hormone holidays seem to work well.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 09 Jan 2015 at 20:23

Hi Roy,

I think in your case you have to follow - at least three consecutive rises before action is taken. Also with your more unusual treatment of R/T I don't know if any R/T - psa bounce would be relevant or not.

The psa figure of when to introduce HT should really be based on the Gleason score as much as the actual figure I seem to recall. Higher grade = earlier intervention. But whether the diagnosis Gleason score was and is still accurate is of course another quandary. I certainly believe waiting until 10 to be too high for all but the lowest grades & even then ........

 

So yes, waiting game.

User
Posted 10 Jan 2015 at 00:57

Sorry Roy, I just assumed the onco had accepted that your treatment had failed. My understanding was that with no prostate, anything over 0.2 was confirmation that PCa cells are active somewhere. I think if you get another rise and the specialist still doesn't think it is a problem you should consider getting a second opinion.

Rob, normally I would agree with you about waiting to 10 but Dad is 78 and very busy so he has made a decision that HT is not a place he wants to go. He of course will be slightly swayed by how Stan approached his disease.

Also, we are hearing more now about hospitals using 20 as the trigger for commencing long term HT once radical treatments have failed although I presume there will be some financial motive there to muddy the waters.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 10 Jan 2015 at 10:04

Hi Roy,

We each need to follow our own path on this journey of so many twists and turns. You still have the cure fight in you, hopefully that will go a long way in helping you achieve it.

I wish you well on your chosen way forward.

Good luck

Ray

User
Posted 14 Apr 2015 at 11:16
Hi Guys

Just seen my latest PSA score online, it's risen now to 2.1 which I had already calculated as the doubling time seems to be consistent at 1.8 months so will see my Onco on Thursday to plan the next step which I assume will be a PET/CT scan to locate the area concerned. The thing that concerns me is that at my last appointment, my Onco was adamant the RT would have been successful in the area that was targeted so where is it hiding? And why is the doubling time so consistent if the initial cancer has been treated successfully, I just can't help but think the IGRT may have missed the target, but I suppose the scan will answer that. Just like anyone on here every ache and pain is associated with PCA in our minds but I try not to assume things until I get proof.

I must admit it is difficult to remain positive with results like this and inside I am screaming, but put a brave face on for the sake of others close to me as they get upset if I say what I am thinking, so I can only be open with people on the forum who know what we are all going through at times like these.

So if anyone has any ideas or comments, or questions I should be asking feel free to post.

Roy

User
Posted 14 Apr 2015 at 20:06

Hi Roy sorry to hear of a continuing rise. Your approach to this has been unwavering and you've thrown everything at it so far. I'm hoping you will maintain that same resolve to continue the 'fight'.

I don't really have any advise apart from discussing all the possible treatment options with your oncologist. Are there any trials available where you may be able to access the latest treatment combinations.

Either way I'm thinking of you but sure you will rise to this challenge.

Let us know how you go on on Thursday

Bri

User
Posted 14 Apr 2015 at 21:30

Hi Roy,

Like Bri I can't offer any advice but I just wanted you to know that I am reading your posts and thinking of you. Good luck for Thurs.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 15 Apr 2015 at 09:33

Hi Roy,

Just wanted to add my support for you too.  You're in my prayers that everything will be sorted for you soon.

Steve

User
Posted 16 Apr 2015 at 23:42

Hi Roy,

The important thing is to try to establish where the cancer cells are as your Onco plans to try to ascertain. This may prove very difficult even with better scans than a CT/PET scan (an MR PET Choline or 68 Gallium are better). If the cancer is found to have spread it is likely that HT may be given sooner or later. However, if the cancer is seen to be sufficiently contained, it may be possible to have another salvage treatment. Although I still have a prostate, albeit a radiated one, I am in a similar situation in as much as I am waiting the results of scans to determine whether I have HT to deal with the cancer systemically or yet another different salvage treatment to the greater prostate area.

Barry
User
Posted 22 Apr 2015 at 22:03

Hi Roy,

At last a date for your new scan , I have everything crossed for you. I agree that with the old forum we could see how many people were reading our posts and now we have no idea .  

At least you know that I am reading. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif. 

BFN

Julie X

 

NEVER LAUGH AT A LIVE DRAGON
User
Posted 22 Apr 2015 at 23:51

Good luck Roy :-)

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 07 May 2015 at 21:50

Roy I'm hoping the results are not as bad as you are anticipating. Easy for me to say but we know how easy it is to put every ache and pain down to the PCa.

Let us know how you get on mate

Bri

User
Posted 07 May 2015 at 22:09
Roy I will be hoping all your aches are insignificant and that any spread is minimal.

Best wishes

Xx

Mo

User
Posted 07 May 2015 at 22:50

Hi Roy,

Well at last the scan is done and know for the wait for results life never gets any easier does it. The waiting always seems to take forever . I certainly know what you mean about every ache and pain being attributed to the pca. On the outside I look calm and incontrol underneath the water I am paddling like a very manik duck every time Trevor sneezes.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif.

Funny how the voice of reason is so easily drowned out by the voice panik.  

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 18 Jun 2015 at 20:31

Hi Roy,

A bit of a mixed bag, a question for Jamie on Saturday i think. i have copied below some of his interests.

 

Along with colleagues, he has developed, and implemented Image Guided Intensity Modulated Radiotherapy (IG-IMRT) with Volumetric Modulated Arc Therapy (VMAT) for Prostate cancer, as well as using Tomotherapy to treat Rectal cancer. Research interests include SiR Spheres, for which he is the Principal Investigator in Nottingham, and drug development

Si

Don't deny the diagnosis; try to defy the verdict
User
Posted 18 Jun 2015 at 20:53

Sorry to hear this latest development Roy...but it sounds like there are still options to try and get shut

Keep kicking it's ass mate

Bri

User
Posted 18 Jun 2015 at 21:02

Hope they can get it sorted, Roy,

steve

User
Posted 18 Jun 2015 at 21:50

Sorry we will not be seeing you Roy, i will print off your post and get Jamie's take on it.

All the best

Si

 

 

 

Don't deny the diagnosis; try to defy the verdict
User
Posted 18 Jun 2015 at 23:42
Roy

sorry you are not going to be at Leicester, I will scribe for Jamie's reply to your question.

xx

Mo

User
Posted 19 Jun 2015 at 12:40
Roy

I have always said your research and knowledge is top drawer. I have just sat and watched the video 30 mins of amazing information, incredible scan pictures and a very clever and pioneering man. It really does give enormous hope to anyone with access to a choline pet scanner and a brave and forthright oncologist.

I found the video a bit frightening as well as enlightening, it all sounded so very straight forward and made me think whay have we not seen so much more progress in treataing even advanced forms of PCa to give men a chance of remission.

I guess this is all a bit too much for the budgets and constraints of the NHS though.

I suspect this video and its content may form a big topic of coversation at MOS this weekend.

It is probably the first thing I have seen that talks about treating advanced disease that also provides a heads up for those who are doing great at the moment but may get progression in times to come.

It seems to suggest the answer to your question is yes the level of PSA has a direct relation to the amount of spread. Especially if you look at the case of the 40 year old with a PSA of 25000 .

Thankyou so much for sharing this

wish you could have been at Leicester

xx

Mo

User
Posted 19 Jun 2015 at 15:21

I belive its more complex than a direct relation.

Two reasons of which I've no doubts there are many more:

1)PSA could all be coming from the tumour or from that and spread elsewhere.

2) Many different types of PCa so in general terms and my understanding is: as the tumour develops the centre of it has more aggressive cells. Initially they will produce more PSA but as they become more aggressive will not increase PSA and or even produce less.

As regards a possible way forward: RT to zap site of known spread and HT to hopefully kill of any dormant cells elsewhere.

Good luck

Ray

User
Posted 19 Jun 2015 at 16:02

Hi Roy L,

 I finally received the results of my PET scan this week. Not bad for one that was (allegedly) requested in January and took place in March!

 

  Like yours, mine was a good news/bad news result.

It appears that the bed of the prostate is clear (I have had both RP and RT)

However, one lymph node was (I think the term the urologist used ) 'glowing' indicating the presence of PCa. This, I was told is likely to be the source of my PSA of 0.7

He did reel off a name but it went in one ear and out of the other but apparently it's by the junction of the main body artery and the leg artery.

The urologist said that a removal by him would be difficult with no guarantee that the correct node would be removed.

I am being referred to a oncologist to see whether RT would be feasible.

Best wishes,

Dave

 

Not "Why Me?" but "Why Not Me"?
User
Posted 19 Jun 2015 at 21:30
Thanks everyone

Mo I am pleased you enjoyed the video, it just goes to show not everything is lost if the Oncologist is open minded and willing to push the envelope. I think you hit the nail on the head, money or the lack of it drives most things in this world unfortunately, if I was willing to pay I could have this done and dusted in a month, but hey ho.

Ray thanks for the info. As you say this disease is more complex and logic doesn't always come into it. The reason for the question was that as I am not at the moment on hormones, if I front it out with the rapid doubling time my cancer is showing, will the scan I have be out of date in relation to the area used to plan the zapping if the time frame is extensive, but I would assume there would be some sort of margin added to prempt this.

Hi Dave pleased to hear the PET/CT scan has finally produced answers for you in that it has identified the spread and can now be sorted, I assume the surgeon is worried that he may give you lymphodema due to where it is situated. It's a pity this type of scan is not available from the start for everyone instead of assumptions and statistics.

Thank you all

Roy

User
Posted 23 Jun 2015 at 07:42

Originally Posted by: Online Community Member


.... It's a pity this type of scan is not available from the start for everyone instead of assumptions and statistics.


Roy

 

 Hi Roy,

I feel I can relate to that.

When my PSA rise after RP continued, the urologist referred me to the oncologist, with a view to salvage RT, stating that; "I'll leave it up to (oncologist) to decide whether to give you a scan beforehand"

At the time, I didn't think too much of it, cobblers sticking to their lasts and all that. But on reflection, I'm not so sure.

If it was a case of 'Should I or shouldn't I send him for a scan?" I would think that the reasonable action would have to have proceeded with a scan - especially as I was going private so there should have been no financial down-side for them.

On the other hand, my RT treatment was NHS, was the decision not to scan beforehand (apart from normal pre-RT checks) made on financial grounds?

In the event, I had my RT and my PSA didn't change. I now wonder, based on my recent scan which showed no PCa on the prostate bed, whether my RP was successful and in fact my prostate bed was clear of PCa because of the previous operation and that the PSA result was coming from the 'glowing' lymph node.

Of course it can only ever be guesswork, but was not only the RT on my prostate bed unnecessary but having had it, does it now disqualify me for RT on the node?

It's not something I dwell upon too much, what's done is done. And as I say, only guesswork but I mention it because I believe all info on experiences may benefit by being shared.

Dave

Edited by member 23 Jun 2015 at 08:41  | Reason: Not specified

Not "Why Me?" but "Why Not Me"?
User
Posted 23 Jun 2015 at 13:53

John's salvage RT was to prostate bed and bottom of bladder as spread to bladder had been apparent when they opened him up for the RP. The surgeon had ended up removing the bottom part of his bladder and doing a re-design. It therefore seemed reasonable to include in salvage RT as the most likely site of recurrence.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 20 Sep 2015 at 23:27

Dave,

I have an appointment with the Marsden on 23rd Sep and will take the opportunity to ask about the SABR Roy is having and the thinking on further doses of radiation after a man has had it as a primary treatment. (When I first considered RT at the Marsden back in 2007 as my primary treatment I asked if I could have a higher dose than the 74gy given in 2gy fractions recommended by NICE, as I read that higher doses gave better results, albeit with greater risk of more severe side effects. This request was refused.) It could make a difference as to where the cancer has spread and how much radiation this area has received previously or the thinking may changed or it may be this would be considered on a case by case basis. Clearly, there must be a point beyond which further RT will become unexceptionably dangerous. I will post what I am told at my consultation.

Barry
User
Posted 02 Oct 2015 at 01:04

Hi Roy,
My second opinion was at the old QE B'ham back in 2007 but moved on so I can't use him as a contact. Nevertheless, I will ask my GP whether he would refer me to the new QE for an opinion on my scans and if appropriate for treatment with Cyberknife or SABR. Unfortunately, many commissioning bodies or whatever they call themselves, will not fund Cyberknife but might agree to SABR funded through a trial.

(Just seen newspaper reviews on TV and two papers have a headline that GP's are to be paid a bonus for NOT referring cancer patients to hospital - can you believe it?!!!!)

Barry
User
Posted 23 Oct 2015 at 11:22

Great update - I hope it all goes smoothly

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 23 Oct 2015 at 13:50
Roy

There will be many people watching your thread with great interest. Ground breaking treatments or new approaches to treatments are always captivating. You have openly shared your experiences throughout your journey and I thank you sincerely for that.

I will be watching out for your updates and wishing you the best possible outcome.

Xx

Mo

User
Posted 24 Oct 2015 at 19:33

Hi Roy,

   Very good news about the SABR, especially as cyberknife seemed to be ruled out for you earlier.

I have finally go the go-ahead for SABR at Mount Vernon (it was dependent on the results of both a PET/MR and subsequently, a MRI showing no other spread apart from the 'glowing' lymph node which will be treated)

So I'm pretty well at a similar stage to yourself, waiting for the planning results.

 

 

Dave

 

 

Not "Why Me?" but "Why Not Me"?
User
Posted 24 Oct 2015 at 20:08
Hi Dave

Great news that you are also to receive SABR, we will be able to compare notes and it will also be helpful to others, in that mine will be treating the bone and yours treating the soft tissue Ie lymph node so keep us informed and good luck.

Roy

User
Posted 24 Oct 2015 at 21:13

Hi Dave,

Pleased you have also got the go ahead for SABR. It seems that this treatment is available at several centers so worth looking into by others. One of the earliest facilities and now a major one is at Leeds :- https://www.elekta.com/press/e6303969-7835-4f4b-9174-7d46d46d9283/elekta-s-versa-hd-rapidly-enters-service-as-ideal-system-for-stereotactic-radiotherap

Barry
User
Posted 18 Nov 2015 at 17:21

Hi Roy,

 

  Good Luck for tomorrow and your subsequent treatments.

 

Dave

Not "Why Me?" but "Why Not Me"?
User
Posted 21 Nov 2015 at 15:39

Hi Lyn ,
Your inbox is full ( oh to be so popular )
In short I was told my Choline PET would only be really effective with a PSA of 3 or more. They pre-booked mine but my PSA was 2.2 at the time . They still think it might have been too early to see any spread which they still suspect .
Best wishes
Chris

If life gives you lemons , then make lemonade

User
Posted 08 Dec 2015 at 18:05

Good news Dave and with the SABR form of RT continuing to do the job for many months yet, hope that PSA figures will continue to fall.

Barry
User
Posted 08 Dec 2015 at 18:56
Marvellous news Dave, looking good, keep us imformed of your progress.

Roy

User
Posted 14 Jun 2016 at 12:06

Sorry it hasn't gone according to plan Roy.

You're a fighter !

We can't control the winds - but we can adjust our sails
User
Posted 14 Jun 2016 at 13:25

You show great spirit Roy and that's half the battle. All the best for the future
Chris

If life gives you lemons , then make lemonade

User
Posted 14 Jun 2016 at 20:44

Very sorry about the way this is going Roy and hope together with your Onco a further treatment plan can be put in place that will give your cancer a 'bashing' that is more long lasting.

Barry
User
Posted 17 Jun 2016 at 11:03
Hi Roy,

I'm sorry things are difficult for you. I really hope they can come up with some long term treatment for you. I shall be keeping my fingers crossed for you.

All the Best,

Steve

Edited by member 17 Jun 2016 at 11:03  | Reason: Not specified

User
Posted 17 Jun 2016 at 13:09

Fingers crossed Roy....

Bri

User
Posted 17 Jun 2016 at 18:07
Hi Roy,

I can't offer any advice re treatment but just wanted you to know that I am thinking of you, plus we both have our dogs as avatars.🐶

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 07 Mar 2017 at 13:04

So sorry to hear this Roy. Not sounding good but seems you have a few options left to keep up the good fight. I really wish you the best of luck

If life gives you lemons , then make lemonade

User
Posted 07 Mar 2017 at 15:51

Keep fighting Roy. Can I ask, why didn't you go on HT in Dec when the PSA hit 16

Bri

User
Posted 07 Mar 2017 at 18:46

Roy

Sad to read your latest update. There could well be a problem with your bones but there's no problem with your attitude so keep fighting.

Ray

User
Posted 07 Mar 2017 at 19:14
Hi Bri

My response seems to have disappeared, so I will try again. Initially as part of the trial I was required to come of hormones so that they could gauge the response without them skewing the results. When the rib was treated the PSA after 3 months was only 2 points higher so it was decided that we leave out the hormones to see if the activity was still coming from the rib and it had been slowed down by the treatment as that would have shown a doubling time of 1 year. I must admit I didn't want to leave hormones out of the mix at the start and would have rather continued with them reigning in the cancer until it became hopefully undetectable then to come off them to see if there was a rise, as I believe it would have been a more logical approach but I had to adhere to the rules of the trial.

Thanks

Roy

User
Posted 07 Mar 2017 at 23:36

Hi Roy,

Very disappointing news, particularly considering the extent you have gone to to identify and treat. There may not be a clear best way forward but you mention chemo and perhaps it might be helpful if you could ask your consultant how strongly it is felt this would be advisable sooner rather than later.

As regards posts disappearing, this is my second attempt to post this. The first time a notice flashed up saying that new posts were sent to the moderators for moderation or words to this effect and then this disappeared and my reply was lost! Still the concessional glitch clearly.

Barry
User
Posted 08 Mar 2017 at 10:34
Hi Barry

Thanks for the comments. As regards Chemo I am not convinced it will be of much benefit to me but I will listen to his take on it. As you know I have preferred to take a more targeted approach to this so I need to now how many areas are affected to formulate a plan forward if possible. I am not the type of person to just follow the so called "Gold Standard", as very early on I realised it was just a another NICE way of saying cost effective (if you forgive the (pun) so I think it's time to think outside the box as this not a condition that lends itself to a "one size fits all approach". I know many will disagree with my thought process, but even now I do not have any regret in the path I have taken. Since I travelled to Munich I always wondered if the PSMA gallium or even Choline could be utilised as a "Trogan horse" to deliver a killer blow to the cancer as it is so readily taken up by Pca, and now I am aware of this happening in Germany and Australia which I have posted on the forum before, so I will be showing my Onco the trial results and ask his take on this approach or whether Radium is the way to go as this only targets the bone and is less destructive.

Thanks

Roy

User
Posted 08 May 2017 at 11:42

So sorry the news isn't better for you Roy.

Fingers crossed that Abiraterone will help you

We can't control the winds - but we can adjust our sails
User
Posted 08 May 2017 at 12:29

Highly disappointing news. Had it not been for the node involvement, as the SABR did a goog job on the left wth rib it might have been worth considering the same treatment for the right counterpart even if you had to fund it. However, as you intimate, the node involvement would now indicate that systemic treatment would be more appropriate and if adopted will hopefully deal with the cancer wherever it is.

Hope further news will be more encouraging.

Barry
User
Posted 08 May 2017 at 21:02

Roy

Very disappointing especially as you have fought so hard, keep doing that.

Good luck.

Ray

User
Posted 08 May 2017 at 21:03

Roy

Very disappointing especially as you have fought so hard, keep doing that.

Good luck.

Ray

User
Posted 10 May 2017 at 21:18

Hi Roy
I don't post much but I follow
keep up the good fight

User
Posted 23 May 2017 at 12:04
Hi all

I saw a different Onco yesterday and it seems that they are advocating chemo which as you know I am not in favour of, they state the statistics of early chemo ( I am nearly five years into this journey) as they class me as new, due to the treatment path I have chosen and seemingly being responsive to hormones. For the first time on this journey I am at a loss, as all that is being offered is standard care so any ideas would be greatly appreciated as it seems I will managed now with no attempt at ridding me of this. One thing of note I have gleaned from my last two conversations is that something is about to be announced in the next few weeks but is secret at the moment but me being me I probed a little, but I can't say anything as we are not allowed to name names on here.

All the best

Roy

User
Posted 23 May 2017 at 15:34

Roy
I am forever hopeful that get rid treatment will come along. That's not just wishful thinking as going back to my joining days in 2004 the medicine chest was a matchbox in comparison to now. So in that sense I don't see chemo as losing the battle but one of stopping/ slowing down growth until more improved treatments come along.

Good luck

Ray


User
Posted 23 May 2017 at 15:38

Hi not sure if your not saying anything is about the abi trial ? I believe data is out in a couple of weeks ,my OH is on the abi/ Enzo arm so hopefully good news
Debby

User
Posted 23 May 2017 at 18:21
Hi Debby

I couldn't possibly comment lol but the person was very upbeat about this and believe me he should know, this is his baby.

Roy

Edited by member 23 May 2017 at 18:23  | Reason: Not specified

User
Posted 03 Jun 2017 at 12:18
This is the news I have hinted at. I had an hours talk with the professor named and he was very exited about it.

https://www.theguardian.com/society/2017/jun/03/prostate-cancer-therapy-study-abiraterone

I have put a separate post on here in case people don't read this thread

All the best

Roy

User
Posted 03 Jun 2017 at 18:43

Hi Roy,

This made the TV news this afternoon (as did a new drug for ovarian cancer). A Dr from Cancer Research UK suggested trials showed that combining ADT with Abiraterone would greatly improve the chances of extending the lives of men at risk, albeit with an increase in side effects. Are you being offered this?

Edited by member 03 Jun 2017 at 18:50  | Reason: Not specified

Barry
User
Posted 03 Jun 2017 at 21:25

I am heading that way ,
Got app with Onco on the 8th June at the RM I will be asking about this.

User
Posted 03 Jun 2017 at 22:53
I suppose as Trevor has been on Abbiraterone plus steroids and also bicalutamide 12 weekly although not as a trial for the last 18 months , something! Something , is holding our ship steady and long may that continue.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 27 Jul 2017 at 10:05

Why are you not getting the choice of Abi or Enzo Roy? From your bio I see you haven't had either of them before so I'd of thought there shouldn't be a problem for you having one or the other. That's unless your Onco is hanging on to them to give you after the chemo.

User
Posted 27 Jul 2017 at 15:10
That's odd because my husband was prescribed enzalutamide but he didn't get on very well with it, he definitely expressed a preference for either enzalutamide or aberaterone instead of docetaxel and his oncologist agreed to try it for him, no mention of NICE so now he is going to try aberaterone, again no mention of the restrictions his consultant did say that he had a three month window of opportunity to try the two different treatments according to the new rules.

If all else fails then he would be likely to try docetaxel

User
Posted 27 Jul 2017 at 16:29

Roy, the stuff about NICE not approving Abiraterone is garbage. A deal was done where the treatment was free after a certain number of treatments, as indeed it was to me for several months. On that basis, NICE approved the use of it. Of course, the local NHS trust may still resist its use for those few months on cost grounds, but NICE can't be blamed on this one

AC

User
Posted 27 Jul 2017 at 16:56

Abbi & enzo are approved for men that are hormone resistant; presumably Roy's onco can't actually say Roy is HR yet as the PSA fall is slowing rather than reversing? Plus he is in Notts :-(

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 27 Jul 2017 at 19:45
Roy ,

Trevor was prescribed Abbi almost 2years ago and yes as Lynn says he was hormone resistant at the time but chemo has not been an option for us due to the heart issues .

I would pursue this if I was you .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 28 Jul 2017 at 09:05

Best wishes. My husband had session 2 last week.

User
Posted 28 Jul 2017 at 09:34

Hope it goes well for you Roy.

Barry
User
Posted 28 Jul 2017 at 10:20

Shame there's no bar. Always seems to be a delay at ours. Sending wishes !

If life gives you lemons , then make lemonade

User
Posted 28 Jul 2017 at 10:33
Hope it goes well Roy

Are you having it at city hospital

Don't deny the diagnosis; try to defy the verdict
User
Posted 28 Jul 2017 at 12:15
Best wishes Roy. Hope it does a good job and you have minimal side effects. Ian.

Ido4

User
Posted 28 Jul 2017 at 17:04

Hope it's gone ok Roy.... keep fighting mate

Bri

User
Posted 01 Aug 2017 at 14:11

Can't help much Roy because I got little in the way of bone pain after each infusion. How about calling the chemo nurses in the ward where you had chemo (I'm assuming you have a similar structure at your hospital as I had at the RD&E)? Have you tried 1g of paracetamol (the max dose every 4 hours up to 4g per day)? I find that dose is helping with the shoulder pain I now have.

Edited by member 01 Aug 2017 at 16:20  | Reason: Not specified

User
Posted 01 Aug 2017 at 14:21

Hi Roy when my OH had chemo approx 3/4 days after he would get horrendous pains in thighs and also in old injurys such as ribs ,ankle and even in his ear where years earlier when he'd been welding a piece of moulten metal went in ,he delt with it by taking co-codomel .It would be mainly at night when it was bed time and last approx 2/3 days .this gradually eased after the 3 cycle of chemo .hope this helps
Debby

User
Posted 01 Aug 2017 at 14:45

The best pain relief you can obtain over the counter is co-codamol ( a mixture of paracetamol and codeine ) and Ibuprofen , taken at the same time 4 hourly. It's like 3 painkillers in one hit. But make sure you eat and also be aware you can get constipated. Also , Codeine is addictive apparently so should be used for 3 days only. Never stopped me. Dissolvable tablets in water hit the pain quickly

If life gives you lemons , then make lemonade

User
Posted 02 Aug 2017 at 13:47
Well I have talked to a few people regarding the control of the pain, so it seems it will be initially trial and error with over the counter meds. One thing that came out of the discussion was this was maybe associated with the injection I self administered on sat which was to boost the white blood cells which makes sense.

Thanks

Roy

User
Posted 02 Aug 2017 at 17:20

My husband has had 2 Chemo sessions and also self injecting Filgrastim. He had some bone pain but was told this was due to the injections. The pain responded to pain killers and didn't last long in his case. He was told if it continued or got worse then to phone the hotline no we had been given. If you have been given a contact no it may well be worth asking. My understanding is that Filgrastim is fairly new to be used in this way and they are wanting to monitor any side effects.

User
Posted 02 Aug 2017 at 23:14
Hi Roy ,

I can't comment on the pain level re the chemo but no one should experience pain that is not well controlled so my advice would be contact your GP asap , also your oncology nurse please don't assume it is part and parcel of any treatment . Phone the chemo dept and explain what is happening.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 18 Aug 2017 at 12:09

Can't answer your query Roy but want to wish you well. Hopefully the PSA rise is to be expected at this stage.

Good luck with the next round of chemo

Bri

User
Posted 18 Aug 2017 at 12:54
Hi Roy

The cabazataxel I am on at the moment I had small increases in PSA on both my first and second cycle then a good drop on the third

Hope you get the same results

Si

Don't deny the diagnosis; try to defy the verdict
User
Posted 18 Aug 2017 at 18:58

Good luck Roy
always watching and wishing you well
Barry

User
Posted 18 Aug 2017 at 19:12

Wishing you the best Roy as ever. Hope things come good for you

If life gives you lemons , then make lemonade

User
Posted 18 Aug 2017 at 21:46
Hi Roy,

Can't comment re the PSA and chemo but just wanted you to know that I am thinking of you .

X

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 19 Aug 2017 at 01:08
Hi Roy,

I just wanted to wish you Good Luck and hope everything goes well with the chemo. Try not to worry, I know it's hard not to but hopefully the PSA will start to fall.

Steve

User
Posted 19 Aug 2017 at 08:21

Take heart Roy, I don't think medics expect a drop after only one session!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 30 Sep 2017 at 10:13

Roy

Keep the fighting going. Hope the pain goes down and the gain goes up.

Ray

User
Posted 30 Sep 2017 at 19:12
Lovely news Roy ,

The chemo can't be easy but you are doing it , you are doing IT.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 30 Sep 2017 at 20:16

Best wishes ,keep going ,
Debby

User
Posted 30 Sep 2017 at 20:25
Ah Roy

So many think chemo is easy, but I don’t see it. We are all different I know, but I’m sorry you are finding it tough. Big cyber hugs (gently given).

I hope things continue to improve for you.

Devonmaid

User
Posted 21 Oct 2017 at 11:50

Hang in there Roy.
All the best

If life gives you lemons , then make lemonade

User
Posted 21 Oct 2017 at 15:25

So far so good, Roy. Hope the PSA keeps going down. It may still drop after your sixth session, of course. If you reach a plateau, I guess they'll try steroid treatment as has happened in my case. Hang in there and hope for no side effects on fifth and sixth cycles.

Good Luck

AC

User
Posted 21 Oct 2017 at 17:41

Hi Roy,
I always follow your postings and I must say you have worked very hard to tame this beast,
I hope that there is some follow up treatment plan after chemo for you,

I am now on early Chemo for recurrent Pca, six sessions which should improve OS by on Average lets say a year
HT should work better for longer [fingers crossed]
I also suffer bone pain but I have now had second session and it was not as bad this time as the first time
I self inject starting on day four after chemo for five days
I was doing it wrong for the first few days not fully completing the injection so that could have been the cause of the bone pain,
also suffer from extreme tiredness in the first week ,sore mouth and lack of taste , sleep problems as well

Good luck Roy I know it is not easy

Barry

User
Posted 21 Oct 2017 at 19:10

Still dropping Roy...stay strong mate

Bri

User
Posted 27 Oct 2017 at 18:55
User
Posted 15 Dec 2017 at 13:49
Great to see your PSA reduce Roy and finish the year on a positive. Wishing you and all on the forum all the best, Ian.

Ido4

User
Posted 15 Dec 2017 at 19:38
That’s really great to see those results Roy.

Have a fab XMas

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 15 Dec 2017 at 22:35

Very encouraging Roy. Your seasonal good wishes and hopes for the New Year warmly reciprocated.

Barry
User
Posted 26 Jun 2018 at 15:41
I’m not clever enough to offer advice but just wanted to say how gutted I am for you and offer support. Sending strength.

If life gives you lemons , then make lemonade

User
Posted 26 Jun 2018 at 17:48
Roy, having read your biog, I'm puzzled that you ever stopped the hormone treatment. Through all my various treatments over nearly eleven years, I've always been on Zoladex. Your PCa looks to have been pretty aggressive. Was there never a biopsy? There are treatment options available to you, I'd have thought, as there have been to me. If yours is a highly differentiated cancer, the latest, yet to be cleared by NICE, Keytruda, might be of interest, too. Your oncologist is best placed to advise, of course, but your PSA number is still low and you should certainly not despair.

Good luck

AC

User
Posted 26 Jun 2018 at 22:07
My husband finished Chemo last October PSA 1.1 (down from over a thousand at diagnosis March 2017). Since October every PSA has risen (doubling in 5 weeks) and he was offered Abiraterone, Enzalutmide or clinical trials. We went to the Marsden to talk about clinical trials and is now on a trial for Ipatasertib / or placebo with Abiraterone. PSA coming down and only 6 weeks into this. Minimal side effects if any. A few odd aches occasionally but no pain killers needed, We know he is on Abiraterone and there is a 50% chance he is on trial drug but it is double blind. Lots of monitoring and will be scanned again next week.

I hope you find a treatment that works for you.

User
Posted 26 Jun 2018 at 22:35
Can’t advise Roy but just want to wish you well and sorry to hear the PSA has risen. I’m sure others will offer sound advise as pretty sure there are still plenty of tools in the box

Take care

Bri

User
Posted 26 Jun 2018 at 23:17
Roy,

Sorry that you have suffered severe side effects of Chemo without the hoped for improvement. I would agree with AC this needs to be discussed with your oncologist. You could also seek a further opinion from the Marsden who perhaps have a wider experience through running many trials.

Barry
User
Posted 22 Aug 2018 at 14:13

I’m so sorry to read this Roy. The waiting game until you see oncologist again is very difficult.

Are you expecting to be offered Abiraterone or Enzalutamide?

 

Ido4

User
Posted 22 Aug 2018 at 16:47
Roy, I understand that abiraterone is given to men already on HT. I assume it is the same for enzalutamide. Certainly in my case, abi was a supplement to zoladex. It worked for nearly three years. I suspect in your case, however much you may dislike the inevitable side effects, you are going to need to get the testosterone out of your system if it is feeding the PCa. A month of HT will probably get you to a point where abi becomes an option, but thereafter I suspect you will stay on HT. Checking out with your oncologist.

AC

User
Posted 22 Aug 2018 at 20:30
Abi and enzo work best on castrate resistant PCa - yours isn't castrate resistant yet so you would be taking a drug that isn't designed for the stage you are at. I think that unless you can get on a trial, you have to opt for the degarelix and see what happens - once that fails, abi or enzo come into play.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 22 Aug 2018 at 20:51

Hi guys

thanks for the support. 

AC yes you are right I need to tackle the testosterone and Degralex should get me to castrate in less than 3 days which after past experience is not appealing with the side effects and the possible mutation of the PCA, whereas Bicalutamide has caused me little problems apart from the obligratory man boobs. The Onco took me of Bicalutamide saying it was no longer effective which I don't understand as my PSA was still on the decline although declining at a slower rate.

 

Hi Chris

its difficult to know what path to take knowing that every intervention seems to cause the cells to mutate to find a way to survive. I have always questioned the way NICE lay out the steps we are to take based on cost effectiveness, leaving other counties to innovate and shoulder the costs.

one thing I don't understand is if Chemo is designed to kill fast replicating cells, why do we continue with hormones suppressing this process,as i believe with other cancers they stop hormones whilst undergoing Chemo.

 

thanks Lyn for the reality check I was not told that Abi or Enzo work better on CRPCA as my Onco has always said it was an option after chemo. Do you know if it can be used as mono therapy.

 

thank you all

 

Roy

 

User
Posted 22 Aug 2018 at 21:09
Thinking of you Roy and hoping the scan results are ok. It’s a sod that you have to wait a month though

Bri

User
Posted 22 Aug 2018 at 22:50
No, it is always given with HT I think. The point is that degarelix etc stops production of testosterone; when you become castrate resistant what they mean is that your cancer has learned to create pseudo testosterone so that it can feed. Abi & enzo stop that bit from happening - it wouldn't treat your cancer if you have testosterone in your body.

Bicalutimide does not result in castration so will not solve your problem.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 22 Aug 2018 at 23:05

I was told by onco that I will always be on some form of HT, no matter what else happens, or whatever other treatment I may be given.

Sorry to hear your news Roy and I hope you can get some answers soon

Best wishes

Peter

User
Posted 28 Sep 2018 at 06:54
Thanks for the update Roy. Some positive news in there for sure , however I dont understand how systemic chemo has cleared up all the old known stuff yet allowed new stuff to grow. Doesn’t make sense really ?

If life gives you lemons , then make lemonade

User
Posted 28 Sep 2018 at 15:00
You will keep hanging in there Roy I'm sure, as the fight goes on.
Barry
User
Posted 28 Sep 2018 at 19:38

Keep fighting, Roy! 

User
Posted 28 Sep 2018 at 19:55
Silver linings light up cloudy days - stay well Roy x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 15 Apr 2019 at 12:11

Hi I thought I would post an update and show I am still here nearly 7 years since diagnosis with a PSA of over 94.

the time since my Chemo has not been pleasant leaving me with peripheral neuropathy, making walking difficult, but it is improving albeit slowly.

Since my last post I have had two PSA checks, one returned the same as before at 7.9 and the next came down to 7.6 so I chose to stay on the Bicalutamide, but my last check showed a rise at 9.5 so I had to make a decision, stay on the Bicalutamide which seemed to be failing or bite the bullet and accept Degralix, which I had refused uptil now. Having checked my level of testosterone and androgen level I had to concede, as they have remained very high with the T at over 50 so I needed to bring it down, therefore I had the Degralix loading dose last Thursday with the next dose in 4 weeks. So we will see how I goes as according to the Onco I should reach castrate level any day now ( oh happy days).

all the best

Roy

Show Most Thanked Posts
User
Posted 06 Jan 2015 at 11:51

Hi Roy,

My approach would be (i) to hear what the oncologist has got to say - he is the expert  (ii) have up my sleeve a request for a further sensitive scan - Choline-PET / MRI (I think you had one of these before) (iii) the merits of additional therapy e.g. cryotherapy if some of the blighters are still there. I would even go so far as doing a little bit of research beforehand re. places that offer it.

Flexi

User
Posted 06 Jan 2015 at 12:18

Hi Roy,

Sorry to hear about your latest PSA rise, My thoughts about HT are exactly the same as yours, not fun !!

I had a little dig around and found the below  , hope you find it helpful, it was published May last year.

Si

 

 

"As usual, we are confronted with a new contradiction. It has been believed that earl hormone therapy (ADT) in men with a biochemical recurrence (PSA only) would benefit from immediate ADT. A study released from the Harvard School of Public Health contradicts this assumption, but the study lacks follow up beyond 10 years.

They evaluated 2,012 men whose prostate cancer relapsed, those who delayed hormone treatment were no more likely to die over five and 10 years than those who started therapy immediately. “For both groups and both outcomes, the survival is very similar,” said Xabier Garcia-Alben, an epidemiologist at Harvard and a study author. The researchers used a 14,000-patient database from the University of California at San Francisco that tracks men with prostate cancer to assess the benefits of therapy.

The results were released yesterday and the actual data will be available for review at the up-coming American Society of Clinical Oncologists (ASCO) meeting.

In the study, 85.1 percent of men who started treatment immediately survived over five years, compared with 87.2 percent who delayed therapy. Over 10 years, 71.6 percent of men in both groups were alive. These numbers do not reflect a statistical difference.

William Oh, M.D. from Mount Sinai Hospital in New York said, “What this suggests is we probably pull the trigger on androgen deprivation therapy a little too soon,” Oh said in a telephone interview. “Nobody’s ever shown that starting right away makes any difference. The sooner you start it, the longer they’re on this therapy.”

I hope that the study will continue so that we can get a better understanding of an even longer time period. Prostate cancer takes many years to kill a man and the data from 15 and even 20 years might tell a different story"

 

Don't deny the diagnosis; try to defy the verdict
User
Posted 06 Jan 2015 at 13:52

Roy

Sorry to read of your PSA increase.

A post difficult to respond to but I have to type how I see your situation..

My thoughts on PET and all scans remain the same – certainly some can identity cells which others may not so they have in some instances a high value. However I can’t see how any scan can pick up cells already mutated but not yet at the mutation level that will show on scans. Thus I don’t see it that RT failed as such just some cells out of RT range were just at the early stages of mutations so couldn’t be picked up.

On a brighter note you take the view HT is control rather than cure – certainly a valid point. Against that is the thought HT can indeed kill cells off particularly at their early stages.

I guess I’m trying to say you could continue to have scans and find some way to see a particular hot spot off in the hope that’s it or accept that either now or at some point in the future longer term HT might be your best longer term control or even cure option?

Not the best of news so hopefully your consultant will have a better way forward.

Good luck

Ray

User
Posted 06 Jan 2015 at 18:25

Hi Roy,

 

Not the figure we hoped for as you have thrown everything at this & not held back on any treatments. With your R/T I would be asking the consultant why the psa actually went so low to begin with ( after the treatment ) . And does this guide the next step ? ( i.e. does this suggest that you hit all the right places in knocking psa down or not = still localised ?)

The choice of pursuing another scan to pinpoint a problem area must be with you of course but I'm one for using such facilities until proven to be unhelpful. I guess much will depend on your consultant & how adventurous they are.

User
Posted 06 Jan 2015 at 22:42
Hi Guys

Thanks for the replies.

Hi Flexi, as you say wait for the Oncologist, and be prepared I wouldn't rule out another PET/CT scan,as for Cryotherapy I have asked in the past if this was a possibility as I know it has been trailed in China I think but the Oncologist said that It would possibly cause to much damage to the bladder and bowel.

Hi Si firstly congrats on the latest PSA and I hope the mets stick to their part of the bargain. Thanks for the info, I have seen this before somewhere and it does seem to suggest that it maybe safe in some cases to defer the dreaded hormones, so I am not adverse to fronting it out for a few more months, or thinking outside of the box as long as I can see the logic behind it, so may do some blue sky thinking. The problem with me is that I will not admit defeat as I am one stubborn so and so.

Hi Ray I agree that at very low levels the scans we have at present are not able to pinpoint spread but until they are improved we have to work with what we have got. On that note whilst I was researching I have seen what maybe an improvement in the way RP is carried out, as we know we have to rely on the skill of the surgeon to remove what he thinks is all the Cancer, but it's not always possible as we know, so a trial is being carried out in the UK which uses the Choline agent which is used in the PEt/CT scan which will then show the surgeon where the Cancer is, while the patient is on the table so he can remove it, I know this is a simplistic view but you get the gist. I have long pondered whether hormones actually provide a cure or put the cancer into hibernation, or even just suppress the PSA produced.

Hi Rob, just like you these a questions are ones I would like answers to, I was told the RT would be targeting the areas shown on my PET/CT scan but it's down to the guy that inputs the figures, I wish I could have been there and made sure. It was IGRT so it should have been accurate if it was planned right, I think the Casodex caused a false reading of 0.05 so I am working on the figure prior to the hormones of 2.7 and now 0.63, as the doubling time seems to have been constant throughout my journey. I know my Oncologist was one of the people that set up the Stampede trial, so I am hoping he is willing to push the boundaries a bit.

Thanks again it means a lot

Roy

User
Posted 08 Jan 2015 at 20:10
Hi

Had my consultation with my Oncologist today, who is of the opinion that the rise in PSA is more than likely not coming from the prostate bed, bladder etc, but from somewhere else, but I remain to be convinced. The plan is to front it out for three more months without hormones, by which time the PSA should be in the region of 1.8

If my calculations are correct, then have a Choline PET/CT Scan to pinpoint the spread and go from there.

Roy

User
Posted 08 Jan 2015 at 20:38

Hi Roy, thinking back to past members whose radical and salvage treatments had failed, I think the PSA reaching 2.0 tended to be the trigger point for discussing the commencement of long term or intermittent HT. Not so long ago there was quite a discussion on here when the onco had told Bri that HT wouldn't be introduced unless the PSA hit 20. My dad is currently around 1.6 and is reluctant to accept defeat until it reaches 10 although, who knows, my nerve might not hold out that long and I am impressed by the stories of people like George & TopGun whose use of hormone holidays seem to work well.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 09 Jan 2015 at 20:02
Hi Lyn

I must admit to being concerned as to whether the RT has failed for me, it may be failed logic but the doubling time has been pretty consistent when I have been off HT,

so I would have expected a decrease in the doubling time if the RT had worked. The Onco believes the RT will have worked and the PSA is coming from somewhere else but as I said I am not convinced, so it's a waiting game. Anyone got a view on my thought, am I just looking on the dark side.

Thanks

Roy

User
Posted 09 Jan 2015 at 20:23

Hi Roy,

I think in your case you have to follow - at least three consecutive rises before action is taken. Also with your more unusual treatment of R/T I don't know if any R/T - psa bounce would be relevant or not.

The psa figure of when to introduce HT should really be based on the Gleason score as much as the actual figure I seem to recall. Higher grade = earlier intervention. But whether the diagnosis Gleason score was and is still accurate is of course another quandary. I certainly believe waiting until 10 to be too high for all but the lowest grades & even then ........

 

So yes, waiting game.

User
Posted 10 Jan 2015 at 00:57

Sorry Roy, I just assumed the onco had accepted that your treatment had failed. My understanding was that with no prostate, anything over 0.2 was confirmation that PCa cells are active somewhere. I think if you get another rise and the specialist still doesn't think it is a problem you should consider getting a second opinion.

Rob, normally I would agree with you about waiting to 10 but Dad is 78 and very busy so he has made a decision that HT is not a place he wants to go. He of course will be slightly swayed by how Stan approached his disease.

Also, we are hearing more now about hospitals using 20 as the trigger for commencing long term HT once radical treatments have failed although I presume there will be some financial motive there to muddy the waters.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 10 Jan 2015 at 10:04

Hi Roy,

We each need to follow our own path on this journey of so many twists and turns. You still have the cure fight in you, hopefully that will go a long way in helping you achieve it.

I wish you well on your chosen way forward.

Good luck

Ray

User
Posted 14 Apr 2015 at 11:16
Hi Guys

Just seen my latest PSA score online, it's risen now to 2.1 which I had already calculated as the doubling time seems to be consistent at 1.8 months so will see my Onco on Thursday to plan the next step which I assume will be a PET/CT scan to locate the area concerned. The thing that concerns me is that at my last appointment, my Onco was adamant the RT would have been successful in the area that was targeted so where is it hiding? And why is the doubling time so consistent if the initial cancer has been treated successfully, I just can't help but think the IGRT may have missed the target, but I suppose the scan will answer that. Just like anyone on here every ache and pain is associated with PCA in our minds but I try not to assume things until I get proof.

I must admit it is difficult to remain positive with results like this and inside I am screaming, but put a brave face on for the sake of others close to me as they get upset if I say what I am thinking, so I can only be open with people on the forum who know what we are all going through at times like these.

So if anyone has any ideas or comments, or questions I should be asking feel free to post.

Roy

User
Posted 14 Apr 2015 at 20:06

Hi Roy sorry to hear of a continuing rise. Your approach to this has been unwavering and you've thrown everything at it so far. I'm hoping you will maintain that same resolve to continue the 'fight'.

I don't really have any advise apart from discussing all the possible treatment options with your oncologist. Are there any trials available where you may be able to access the latest treatment combinations.

Either way I'm thinking of you but sure you will rise to this challenge.

Let us know how you go on on Thursday

Bri

User
Posted 14 Apr 2015 at 21:30

Hi Roy,

Like Bri I can't offer any advice but I just wanted you to know that I am reading your posts and thinking of you. Good luck for Thurs.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 15 Apr 2015 at 08:27
Thank you Bri and Julie for your encouragement it means a lot to know people are reading our posts and thinking of us, it's hard to know as now there is no reference to the number of people accessing the post as there was on the old forum.

Thanks

Roy

User
Posted 15 Apr 2015 at 09:33

Hi Roy,

Just wanted to add my support for you too.  You're in my prayers that everything will be sorted for you soon.

Steve

User
Posted 16 Apr 2015 at 20:25
Hi

I saw my Onco today and the plan is to have a PET/CT scan and take it from there, so not much to report. One thing he did mention which I questioned was when to intervene with the hormones, his opinion was to leave them out of the equation for as long as possible, but with a cancer acting quite agressively I am not so sure, but that's a discussion for another day when the results are in.

Thanks

Roy

User
Posted 16 Apr 2015 at 23:42

Hi Roy,

The important thing is to try to establish where the cancer cells are as your Onco plans to try to ascertain. This may prove very difficult even with better scans than a CT/PET scan (an MR PET Choline or 68 Gallium are better). If the cancer is found to have spread it is likely that HT may be given sooner or later. However, if the cancer is seen to be sufficiently contained, it may be possible to have another salvage treatment. Although I still have a prostate, albeit a radiated one, I am in a similar situation in as much as I am waiting the results of scans to determine whether I have HT to deal with the cancer systemically or yet another different salvage treatment to the greater prostate area.

Barry
User
Posted 22 Apr 2015 at 18:30
Hi Guys

Just received a call from the QMC to tell me the Choline PET/CT scan is to take place next Wednesday 29th, so not long to wait.

Roy

User
Posted 22 Apr 2015 at 22:03

Hi Roy,

At last a date for your new scan , I have everything crossed for you. I agree that with the old forum we could see how many people were reading our posts and now we have no idea .  

At least you know that I am reading. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif. 

BFN

Julie X

 

NEVER LAUGH AT A LIVE DRAGON
User
Posted 22 Apr 2015 at 23:34
Thanks Julie

Nice to know people like you are here for me and others on the forum, I was please the scan has been arranged so quickly ie within 2.weeks. Time to find out where the little b****r is hiding lol.

Roy

User
Posted 22 Apr 2015 at 23:51

Good luck Roy :-)

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 07 May 2015 at 10:12
Hi

Well finally had my Choline PET/CT scan yesterday as the one scheduled for last week was cancelled at the last minute due to the scanner breaking down. The procedure was straight forward and took nearly 3 hours from start to finish.

Compared to the one I had in Munich it was totally different as all I had to have this time was the infusion of the choline, wait an hour and go through the scanner twice, so no being joined up to high pressure lines or contrast gel being forced where the sun doesn't shine etc etc so quite uneventful really.

So now it's a waiting game to see where the spread is. I am imagining it spreading to every area I have a ache or pain in, Like the bones, abdomen etc but no use guessing I will have to wait and see and will update as soon as I know.

Roy

Edited by member 07 May 2015 at 17:02  | Reason: Not specified

User
Posted 07 May 2015 at 21:50

Roy I'm hoping the results are not as bad as you are anticipating. Easy for me to say but we know how easy it is to put every ache and pain down to the PCa.

Let us know how you get on mate

Bri

User
Posted 07 May 2015 at 22:09
Roy I will be hoping all your aches are insignificant and that any spread is minimal.

Best wishes

Xx

Mo

User
Posted 07 May 2015 at 22:50

Hi Roy,

Well at last the scan is done and know for the wait for results life never gets any easier does it. The waiting always seems to take forever . I certainly know what you mean about every ache and pain being attributed to the pca. On the outside I look calm and incontrol underneath the water I am paddling like a very manik duck every time Trevor sneezes.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif.

Funny how the voice of reason is so easily drowned out by the voice panik.  

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 18 Jun 2015 at 19:54
Hi

Well the results from the Choline PET/CT scan are in. First the good news, it seems that the RT I had has taken care of the spread to the bladder/prostate bed area as there was no indication on the scan that it is still active.

Now for the bad news, there was uptake of the Choline in the right pelvic bone near to the sacrum area, which was my worse nightmare scenario. At the moment it is only small, about 8mm in size, and looking back at the previous scans it was there over a year ago but was not active at the time, but has now decided to wake up and make its existence known.so the question is what do I do about it?, what options are open to me?. At first the Oncologist seemed to be heading in the direction of hormones only to control it, until I questioned whether it could be treated by RT to eradicate it rather than just relying on hormones alone, to which he agreed so I am to have a MRI scan to pinpoint it more precisely and see if it can be reached by RT or Cyberknfe.

So if anyone has any suggestions as to treatments etc I can look into then feel free.

Thanks

Roy

User
Posted 18 Jun 2015 at 20:31

Hi Roy,

A bit of a mixed bag, a question for Jamie on Saturday i think. i have copied below some of his interests.

 

Along with colleagues, he has developed, and implemented Image Guided Intensity Modulated Radiotherapy (IG-IMRT) with Volumetric Modulated Arc Therapy (VMAT) for Prostate cancer, as well as using Tomotherapy to treat Rectal cancer. Research interests include SiR Spheres, for which he is the Principal Investigator in Nottingham, and drug development

Si

Don't deny the diagnosis; try to defy the verdict
User
Posted 18 Jun 2015 at 20:53

Sorry to hear this latest development Roy...but it sounds like there are still options to try and get shut

Keep kicking it's ass mate

Bri

User
Posted 18 Jun 2015 at 21:02
Thanks Si

It would be good to get Jamie's take on it, but I am unable to be there, but if you get chance to ask him it would be great. Hope you all have a great time.

Thanks Bri, another battle to fight, the WAR is not over.

Thanks again

Roy

User
Posted 18 Jun 2015 at 21:02

Hope they can get it sorted, Roy,

steve

User
Posted 18 Jun 2015 at 21:50

Sorry we will not be seeing you Roy, i will print off your post and get Jamie's take on it.

All the best

Si

 

 

 

Don't deny the diagnosis; try to defy the verdict
User
Posted 18 Jun 2015 at 23:42
Roy

sorry you are not going to be at Leicester, I will scribe for Jamie's reply to your question.

xx

Mo

User
Posted 19 Jun 2015 at 10:21
Hi

Just checked my blood test online which was taken yesterday and it gone up from 2.1 in April to 4.6 so a doubling time of 1.9 months so it pretty consistent in its aggressiveness, so the sooner I get this sorted the better.

Question ? Does the PSA increase relative to the size of the cancer ie if the PSA doubles, does the size of the cancer double ?

I have seen that Oligometastastic can be treated with curative intent by RT, so this video may be of interest to some.

www.youtube.com/watch?v=NkqizmvqJPo

Roy

User
Posted 19 Jun 2015 at 12:40
Roy

I have always said your research and knowledge is top drawer. I have just sat and watched the video 30 mins of amazing information, incredible scan pictures and a very clever and pioneering man. It really does give enormous hope to anyone with access to a choline pet scanner and a brave and forthright oncologist.

I found the video a bit frightening as well as enlightening, it all sounded so very straight forward and made me think whay have we not seen so much more progress in treataing even advanced forms of PCa to give men a chance of remission.

I guess this is all a bit too much for the budgets and constraints of the NHS though.

I suspect this video and its content may form a big topic of coversation at MOS this weekend.

It is probably the first thing I have seen that talks about treating advanced disease that also provides a heads up for those who are doing great at the moment but may get progression in times to come.

It seems to suggest the answer to your question is yes the level of PSA has a direct relation to the amount of spread. Especially if you look at the case of the 40 year old with a PSA of 25000 .

Thankyou so much for sharing this

wish you could have been at Leicester

xx

Mo

User
Posted 19 Jun 2015 at 15:21

I belive its more complex than a direct relation.

Two reasons of which I've no doubts there are many more:

1)PSA could all be coming from the tumour or from that and spread elsewhere.

2) Many different types of PCa so in general terms and my understanding is: as the tumour develops the centre of it has more aggressive cells. Initially they will produce more PSA but as they become more aggressive will not increase PSA and or even produce less.

As regards a possible way forward: RT to zap site of known spread and HT to hopefully kill of any dormant cells elsewhere.

Good luck

Ray

User
Posted 19 Jun 2015 at 16:02

Hi Roy L,

 I finally received the results of my PET scan this week. Not bad for one that was (allegedly) requested in January and took place in March!

 

  Like yours, mine was a good news/bad news result.

It appears that the bed of the prostate is clear (I have had both RP and RT)

However, one lymph node was (I think the term the urologist used ) 'glowing' indicating the presence of PCa. This, I was told is likely to be the source of my PSA of 0.7

He did reel off a name but it went in one ear and out of the other but apparently it's by the junction of the main body artery and the leg artery.

The urologist said that a removal by him would be difficult with no guarantee that the correct node would be removed.

I am being referred to a oncologist to see whether RT would be feasible.

Best wishes,

Dave

 

Not "Why Me?" but "Why Not Me"?
User
Posted 19 Jun 2015 at 21:30
Thanks everyone

Mo I am pleased you enjoyed the video, it just goes to show not everything is lost if the Oncologist is open minded and willing to push the envelope. I think you hit the nail on the head, money or the lack of it drives most things in this world unfortunately, if I was willing to pay I could have this done and dusted in a month, but hey ho.

Ray thanks for the info. As you say this disease is more complex and logic doesn't always come into it. The reason for the question was that as I am not at the moment on hormones, if I front it out with the rapid doubling time my cancer is showing, will the scan I have be out of date in relation to the area used to plan the zapping if the time frame is extensive, but I would assume there would be some sort of margin added to prempt this.

Hi Dave pleased to hear the PET/CT scan has finally produced answers for you in that it has identified the spread and can now be sorted, I assume the surgeon is worried that he may give you lymphodema due to where it is situated. It's a pity this type of scan is not available from the start for everyone instead of assumptions and statistics.

Thank you all

Roy

User
Posted 20 Jun 2015 at 08:43

Hi Roy
We often get asked will x time before treatment matter. The reply is most often no as growth in tumour will be minimal. However at G8 and above HT is normally given to hold matters steady (except some going for RP). That's how I see you: at high risk of spread so HT to hold matters steady. It's the gamble again - have I PCa cells elsewhere ? If yes HT if no hold back.

Will they allow for any tumour spread - there is circa 6 weeks between planning and having RT so I guess that's the time scale they allow for?

Good luck

Ray

User
Posted 21 Jun 2015 at 13:26
Roy

your 2 part question was asked of our wonderful guest Onco yesterday, is there a direct relation between increasing PSA and size of tumours ...simple answer NO .

Can an isolated and identified met be treated by RT or cyber knife ..yes although if the recurrence is in the same place where RT has been used previously there can be some risks involved.

So quite good news it would seem.

Best wishes

xx

Mo

User
Posted 21 Jun 2015 at 19:23
Thanks Mo

I really appreciate the questions being asked on my behalf and of course the reply from the Onco who I assume was J.

As time goes by, the options open to me become less and less, so it's good to know this could be an option for me with the possibility of durable remission. Do you know if anyone past or present on the forum have undergone RT to the bone as a curative and not a palliative treatment, and if so what was the outcome.

Thank you

Roy

Edited by member 21 Jun 2015 at 20:28  | Reason: Not specified

User
Posted 21 Jun 2015 at 20:24
Roy

I don't knoww of anyone personally, but J was quick to say Yes to your question about using RT curatively to small individual recurrence mets. So I have to assume he has either done this himself or he has seen reported cases of it.

Of course you have to remember he is not giving specific advice he cannot do that without seeing all the information so this was a generic answer.

Best wishes

xx

Mo

User
Posted 21 Jun 2015 at 23:04

He said it was possible but only if there was a strong case for believing that the hotspot was singular and isolated. He quickly followed it up by saying that there is no point if there is a possibility that other clusters exist but are too small to see. He also said that it is only possible if the area to be irradiated is not next to an area that has had RT previously (ie only done if the rays are not going to be touching on a previously irradiated prostate bed etc)

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 22 Jun 2015 at 19:39

Hi Roy,

Sorry to hear about the PSA rise, I found your link fascinating so thanks for that.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 23 Jun 2015 at 07:42

Originally Posted by: Online Community Member


.... It's a pity this type of scan is not available from the start for everyone instead of assumptions and statistics.


Roy

 

 Hi Roy,

I feel I can relate to that.

When my PSA rise after RP continued, the urologist referred me to the oncologist, with a view to salvage RT, stating that; "I'll leave it up to (oncologist) to decide whether to give you a scan beforehand"

At the time, I didn't think too much of it, cobblers sticking to their lasts and all that. But on reflection, I'm not so sure.

If it was a case of 'Should I or shouldn't I send him for a scan?" I would think that the reasonable action would have to have proceeded with a scan - especially as I was going private so there should have been no financial down-side for them.

On the other hand, my RT treatment was NHS, was the decision not to scan beforehand (apart from normal pre-RT checks) made on financial grounds?

In the event, I had my RT and my PSA didn't change. I now wonder, based on my recent scan which showed no PCa on the prostate bed, whether my RP was successful and in fact my prostate bed was clear of PCa because of the previous operation and that the PSA result was coming from the 'glowing' lymph node.

Of course it can only ever be guesswork, but was not only the RT on my prostate bed unnecessary but having had it, does it now disqualify me for RT on the node?

It's not something I dwell upon too much, what's done is done. And as I say, only guesswork but I mention it because I believe all info on experiences may benefit by being shared.

Dave

Edited by member 23 Jun 2015 at 08:41  | Reason: Not specified

Not "Why Me?" but "Why Not Me"?
User
Posted 23 Jun 2015 at 12:42
Hi

Thanks Lyn for the additional info from J. The point regarding only treating it if it is singular surprises me, as I believe that in other countries upto 5 areas are able to be treated and in this country upto 3 areas can be treated although there are not many even willing to do that, but I suppose like everything else it comes down to resources etc. I do think some Oncologists are too quick in following the palliative path and follow the NICE guidelines, rather than go for a durable remission.

Thanks. Julie I am pleased you found the video informative as I hope other people find it helpful.

Hi Dave I share your concern regarding treatments undertaken without definitive proof of where the cancer is situated, surely this cannot be of benefit to the patient and the NHS budget. Was your Treatment IMRT and only focused on the prostate bed or was the treatment area more wide spread to catch any theoretical spread elsewhere in the abdomen, as the more focused approach would have been better for future RT. I do hope your lymph node treatment is successful and you can then put this all behind you, so please keep us informed.

Thank you all

Roy

User
Posted 23 Jun 2015 at 12:46

Hi Roy,

I had this discussion with Jamie a long time ago, and with the right equipment he would go after 4 sites. unfortunately i had a lot more than that.

I wish you all the best going forward, i love people that try something just a little bit different.

Si

Edited by member 23 Jun 2015 at 12:46  | Reason: Not specified

Don't deny the diagnosis; try to defy the verdict
User
Posted 23 Jun 2015 at 13:53

John's salvage RT was to prostate bed and bottom of bladder as spread to bladder had been apparent when they opened him up for the RP. The surgeon had ended up removing the bottom part of his bladder and doing a re-design. It therefore seemed reasonable to include in salvage RT as the most likely site of recurrence.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 02 Jul 2015 at 17:40

Originally Posted by: Online Community Member



Hi Dave I share your concern regarding treatments undertaken without definitive proof of where the cancer is situated, surely this cannot be of benefit to the patient and the NHS budget. Was your Treatment IMRT and only focused on the prostate bed or was the treatment area more wide spread to catch any theoretical spread elsewhere in the abdomen, as the more focused approach would have been better for future RT. I do hope your lymph node treatment is successful and you can then put this all behind you, so please keep us informed.

Thank you all

Roy

Hi Roy,

   Thanks for that, the short answer to your question is 'I don't know'. I would suspect it was focused only on the prostate bed. I had hoped at the time to get some idea of the 'footprint' but it wasn't easy and I was unsuccessful.

Getting information on my RT was like getting blood from a stone - I might just has well been asking the Onco for the name of his tailor!

My reason for finding out, apart from natural curiosity, was that the Urologist and the RT man seemed to be on a different wave-length. Prior to my salvage RT the Uro man stated that he was asking the RT man to concentrate a higher dosage on one side of the prostate bed as that had the higher Gleason score.

 However, when I asked for details of my treatment, all I was told was that "It's 2 gy times 33 = 66 gy" It was even written down of a piece of paper for me!!

  The talk amongst the Prostate Men in the waiting room was that there was one senior radiographer taking (among others) the weekly progress meetings, who was really informative and would demonstrate with the scanning and x-ray images, what was going on. The guys were clearly aware that he was the exception and weren't too impressed with the others who were either senior radiographers or a MacMillan nurse.

 Unfortunately, I got the others on my progress meetings and they took the form of one-way interrogations- "Any bleeding?, any soreness? That's good, see you next time"

 I broached the subject again, trying to ascertain whether the Urologist's recommendations had been followed only to get the following response.

   "Well, urologists do what they do, and radiologists do what they do"   I took that to be a no.

 Shortly I am to see an oncologist (the same one). As the Urologist didn't have sight of the imaging or the scan results (and thus wasting a consultation), and just (by default) a faxed report of the scan for the next consultation, I was keen on ensuring that on the next appointment, the onco would have the scan imaging  available to him by  accessing it in advance from UCLH

So I phoned the man's secretary who said, "Oh he probably won't need it for this consultation, but maybe later"

I would have thought the "He might" might have been a more prudent approach than "probably not"

Picking up on my unease at that, she sort of relented but that may have been in order to humour me.

So we will have to wait and see.

 Dave

Not "Why Me?" but "Why Not Me"?
 
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