That was not in the plan.

User

Posted 23 Jan 2023 at 17:55

Sorry to see your PSA has risen Chris. Time for another scan perhaps?

Ido4

User

Posted 23 Jan 2023 at 18:20

Sorry to hear this Chris. I know with my 3 bouts of palliative RT that a flare was warned ( and a nice bottle of Morphine ) but I only felt the pain of RT to my throat and stomach and lungs. But yes I think you do get a bounce if it flares. Good wishes friend

User

Posted 23 Jan 2023 at 22:51

I wish I could offer more knowledgeable thoughts than good wishes. From what I've seen one psa reading isn't a story. Peter

User

Posted 24 Jan 2023 at 16:13

Sorry to see this Chris. I can’t answer your question but really hope it is a bounce….you definitely deserve something to go your way x all the very best x

User

Posted 24 Jan 2023 at 19:26

Thanks for the replies, went to see J the oncologist this afternoon and came out more confused than when I went in.

My reluctance to have HT apparently excludes me from several treatments. The conversation contained discussions about treatment protocols and private treatment.

Bottom line I will have another PSA in 3 months possibly followed by another PSMA scan. Based on my spreadsheet the PSA might be around 4.5 by then.

Thanks Chris

User

Posted 24 Jan 2023 at 21:32

Sorry to hear this Chris. Did J say whether the increase was due to a ‘flare up’?

I have my Oncol call next week. Supposed to be every 4 months but it never happened in November. So be interesting to see how the PSA has behaved or not over the last 6 months

Fingers crossed for you mate

Bri

User

Posted 24 Jan 2023 at 21:50

Brian, I didn't get a straight forward answer to that question,in fairness probably because it isn't that simple. It could be that another tumor is creating the rise in the PSA .

A lab error on the PSA and missing the tumor were considered unlikely.

Hope you are keeping okay.

Thanks Chris

User

Posted 25 Jan 2023 at 00:15

Not what you or any of us wanted to hear. Fingers crossed it's all those ruptured PC cells

User

Posted 16 Feb 2023 at 17:08

I went to see my GP a few days ago regarding my blood pressure and kidney function, as he was arranging a some blood tests I asked if he could sneak a PSA test in there. He was a little reluctant but when I explained my last PSA rise was out of my normal rise rate he agreed.

My onco nurse rang me this morning with the result, it is now upto 3.6. The following are my last few results.

05/08/2022 1.8

SABR to pelvic lymph node 5 sessions 30 Gy

29/09/2022 1.8

23/01/2023 3.1

15/02/2023 3.6

I use a spreadsheet to record my results and sometimes play with the data, my PSA is now rising faster than ever before.

I don't seem to be able to find anyone in the same situation i.e., 5 lots of sabr treatment to a pelvic lymph, so cannot get any comparisons. I can't find any data on the internet.

Any help would be much appreciated.

Thanks Chris

User

Posted 16 Feb 2023 at 18:55

Definitely not what you wanted to hear.

Can you get another scan? Would show if the sabr had had an effect? Possibly show if it's popped up anywhere else..

I guess realistically you now have 2 choices: Do nothing favouring quality of life or chuck the kitchen sink at it with chemo and intermittent HT..

Dr Qwon in the state's is the only guy I regularly see posting on aggressive treatment for metastatic PC. He is a fan of chucking the kitchen sink at it..

As you are now 71 maybe the do nothing is preferable as you still have chemo and HT in the bank?

User

Posted 16 Feb 2023 at 19:34

Sorry to hear that, Chris, but knowing about so many cases worse than yours doing well, you better not fret too much. As Francij said, you have two options: doing nothing or throwing the sink and use the many and new weapons that luckily are now available.

In my honest opinion, a PSMA SCAN should be the first step, and then, decide.

Good luck xx

User

Posted 16 Feb 2023 at 19:56

Franci and Lola,I see the onco in around five weeks with another PSA a couple of days before the appointment. We have already discussed further PSMA scans a possible further SABR treatment either in the NHS or funded by the insurance company. I am reluctant to go down the HT route.

What I am struggling to understand is why the treatment to a tumor has resulted in such an acceleration of the PSA levels. If there were data or experiences to say zapping a tumor boosted PSA levels I would have a better understanding of what is happening.

Franci , I am a fan of Kwon.

Thanks Chris

User

Posted 16 Feb 2023 at 22:03

Sorry to see this Chris. Like the others have said the PSMA seems the best thing.
I said it myself the other day that further treatment isn’t really the way we would want to go, but how lucky are we that it’s there as an option 🙏🏼 Fingers crossed you will get a plan on your next appointment and get it sorted out x

User

Posted 16 Feb 2023 at 22:32

Elaine, thanks for the reply and thanks for the support you give to many of us on here. , At the last meeting with the onco we discussed the options going forward, if the first lot of SABR fails there would be a second PSMA scan and more SABR treatment if applicable.

I suppose it is the electrician in me wanting to understand the mechanics of what is happening.

Thanks Chris

User

Posted 16 Feb 2023 at 23:02

Chris, there isn't much I can add to your knowledge in this regard, but just in case, I'll tell you about my hub's recent procedures and results, since there's some similarity .

His PSA after Da Vinci was ok, but along five years post surgery it was slowly increasing. When it got to .33 uro referred him to onco and in a few days he had a PSMA SCAN (from the pocket). A pelvic node and one seminal vesicle's bed lit up. He was then put in HT followed by 30 IMRT sessions to the two spots shown and to the whole pelvis as a prevention, at the same time he continued HT. After two or three months in HT alone, a CAT SCAN showed no lesion in the node and some shrinking in the other spot. Now, one year since this procedure started PSA is .006

I can see you're reluctant to HT and the choice is up to you, but maybe you could consider having it?

I insist, try to get PSMA as soon as possible.

User

Posted 16 Feb 2023 at 23:17

"if the first lot of SABR fails there would be a second PSMA scan and more SABR treatment if applicable."

Wouldn't it be shooting blind, to no visible target? The purpose of PSMA is finding the right place to aim the radiation... Just guessing.

User

Posted 16 Feb 2023 at 23:37

Originally Posted by: Online Community Member

"if the first lot of SABR fails there would be a second PSMA scan and more SABR treatment if applicable."

Wouldn't it be shooting blind, to no visible target? The purpose of PSMA is finding the right place to aim the radiation... Just guessing.

Lola, thanks for the replies, we are probably both saying the same thing in a different way. Assuming the PSA does not suddenly go down, I will be having another PSA in a couple of months, if that detects something I can have more SABR treatment to upto 3 tumors, (5 if I go private).

Thanks Chris

User

Posted 16 Feb 2023 at 23:46

Originally Posted by: Online Community Member

I suppose it is the electrician in me wanting to understand the mechanics of what is happening.

Thanks Chris

Ditto Chris….the support I’ve had from you and the other guys and gals on here has just been unbelievable and something I won’t ever forget…especially your support and advice last Christmas…I would have been in a state without your response I’m sure.

I always feel the same that I want to know exactly what is going on 🤦🏻‍♀️ I’m starting to realise it doesn’t always work like that but will keep trying anyway.

Really best of luck for your next appointment and I will keep a look out for your updates x

User

Posted 17 Feb 2023 at 10:36

As you know you are PSMA positive are there any "early lutetium" trials about? Might offer a bearable Side effect profile and targeted radiation??

User

Posted 17 Feb 2023 at 10:39

As you know you are PSMA positive are there any "early lutetium" trials about? Might offer a bearable Side effect profile and targeted radiation??

User

Posted 21 Mar 2023 at 10:24

PSA now up to 4.6, having telephone call with oncologist this afternoon. From 1.8 to 4.6 in six months.

Following telephone conversation, I am seeing the oncologist privately, another PSMA scan on the cards , the problem is sooner or later ? Do it now and then something shows up later or do it later and risk further spread. Then told we may never get rid of it

Thanks Chris

Edited by member 21 Mar 2023 at 18:33 | Reason: Not specified

User

Posted 21 Mar 2023 at 19:26

Hi Chris, Sorry to read that. If it was me I'd have the scan now and decide what's best.

Does hormone or chemo do any good with SABR. Could it set back any others you worry about. All the best Peter

User

Posted 21 Mar 2023 at 20:23

Ahh Chris, Im deflated just reading that post so can only begin to imagine how low your shoulders have dropped.My fingers and toes are all well and truly crossed for you.

Youve got this.

Fist pumping my chest at you mate.

Love and warmth.

Jamie.

User

Posted 21 Mar 2023 at 20:33

Hi Chris.

I'm very sorry to hear that.

Are you concerned that if you have the scan too early that it may show nothing, and then you won't be offered another one later, when you might need it more? Sorry if I've misunderstood your dilemma.

Take good care of yourself.

JedSee.

User

Posted 21 Mar 2023 at 21:36

Gutted for you CC - I think I would be going PSMA now but if it doesn't show anything, I would also possibly ask for more traditional scans just in case you are simply PSMA-

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

User

Posted 21 Mar 2023 at 22:25

All , thanks for the replies, bit of history,I had a PSMA scan at 1.4 in July 2023, that picked up a pelvic lymph tumor and I had 5 SABR sessions in August 2023. I am fairly confident another scan will pick up something. The rise in PSA was described as a small rise.

A PSMA scan on the NHS will be around 3 months, so I asked about going private and then got mixed messages. You can have a PSMA scan in two weeks, treat the tumors (if possible) and then if the PSA rises later we may find something else. Or you could wait 3 months and see what develops, I asked is that risking further spread , answer, now you are asking questions I can't answer. Followed by, I can't discuss private treatments in a NHS environment.

My frustration is not understanding if or why the SABR treatment didn't seem to work. I even asked if they could have missed the tumor, which didn't go down well

In 2010 my GP missed a PSA of 6.9 three years later my PSA was 7.7, that was a rise of 0.8 in three years. I have just had a rise of 1.0 in 34 days.

Still optimistic, and would prefer to go down the possible cure or at least delay route rather than the HT control route.

Franci,177 is not an option as it has to preceded by treatments I haven't had.

Lyn ,sorry didn't quite understand about being PSMA.

Thanks Chris

User

Posted 21 Mar 2023 at 22:45

I think by PSMA-, Lyn means PSMA negative. i.e. your cancer does not have the PSMA protein, so will not show on a PSMA scan.

However as you did have a PSMA scan which did show the cancer in July 2023¿ your cancer is almost certainly PSMA+ (positive).

If you were psma negative, the cancer would still show up on the older scans

I guess it is possible you could have two varieties of prostate cancer, though I'm told that is incredibly unlikely.

I'm sure Lyn will correct anything I have misinterpreted, I just wanted to get a reply to you ASAP.

Dave

User

Posted 21 Mar 2023 at 22:48

Dave, thanks for that, it makes sense now.

Thanks Chris

User

Posted 21 Mar 2023 at 22:52

That's a bugger Chris.. Think Lyn has forgotten you have already had a PSMA + scan.

Think I would want another PSMA scan, it would certainly show if they hit the right lymph node with the SABR as that should be crispy after SABR.. May flag some other targets too.

Ask your ONCO about the bullseye trial for early use Lutetium he may have preliminary info on how successful it has been at avoiding HT.

https://clinicaltrials.gov/ct2/show/NCT04443062

User

Posted 21 Mar 2023 at 23:03

Sorry to read this Chris. Hope you can get the scans you need and find out what is going on x

User

Posted 21 Mar 2023 at 23:13

Franci, I will ask about the trial. I was discussing the 177 treatment with my insurance company and they also said they would not cover it because I had not had some treatments.

Elaine, getting the scans should not be an issue, it is just trying to get one at the optimum time, thanks for your reply.

Thanks Chris

User

Posted 22 Mar 2023 at 01:34

Hi Chris

Sorry to read your thread. You can get Lu-177 early privately in Finland, India and Germany if the trial isn’t an option

Good Luck

User

Posted 22 Mar 2023 at 02:00

No, I was thinking that perhaps the lymph node was PSMA+ but that other mets weren't picked up because they are PSMA- ... I didn't know that you couldn't have + and -

I think if there is a worldwide shortage of Lut177, you will need a plan B anyway so best to get the scan and understand whether the SABR worked, in which case you have other mets and should perhaps bite the bullet and go for systemic treatment

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

User

Posted 22 Mar 2023 at 05:58

I had a PSMA scan prior to surgery which was clear but 6 mths later after surgery two pelvic lymph nodes showed up together at 0.5cm. My onco explained that was about as small as they can see and there is a good chance it is also in other local nodes. As I understand it, that's why full pelvic radiation and a course of HT is often recommended in such cases as they also need to kill off the invisible stuff. Best wishes.

User

Posted 22 Mar 2023 at 08:24

Wishing you the best Chris x

User

Posted 22 Mar 2023 at 09:00

Sorry to hear this Chris.

Hubby had scans after SABR, 2 new lesions shown.

So seems SABR worked, but systemic treatment now needed as SABR not possible on new mets.

Best wishes xx

User

Posted 22 Mar 2023 at 09:54

Hi Chris sorry to hear things not going to plan. I just wanted to reassure you that systemic HT isn’t always as bad as you think. You know as well as anyone that I’m a huge advocate of QOL. I’ve been on Decapeptyl just over 2 yrs now. Zero weight gain , no moobs , hot flushes annoying but no big deal tbh , and my libido may be lower but still healthier than my wife’s. Tablets and pump still work just fine but orgasm can be elusive. Don’t hesitate if they tell you to start ( they told me I may only have a year to live ) , and ask for Decapeptyl maybe. It just seems to have less effects. Take care friend

User

Posted 22 Mar 2023 at 10:04

Originally Posted by: Online Community Member

Sorry to hear this Chris.
Hubby had scans after SABR, 2 new lesions shown.
So seems SABR worked, but systemic treatment now needed as SABR not possible on new mets.
Best wishes xx

Mrs Fish, I have just read your profile, some similarities there , especially the pattern of the PSA after scans and treatment. Useful to compare similar situations, but a little disappointing. I have been told further SABR treatment is possible but all depends on what and where.

Thanks Chris

User

Posted 22 Mar 2023 at 10:41

Sorry to hear this Chris, I hope you can find a resolution quickly

Best wishes, Arthur

User

Posted 22 Mar 2023 at 11:06

Claret, just looked at some Germany and India sites, I will have to look into what my health insurance covers. They all seem to have the requirement that you are castrate resistant and I don't know that. As Lynn mentioned there is a shortage of the 177 and I wonder what the travel insurance would work out at.

Lynn, thanks for the info , I didn't pick up on the - sign. An early scan makes sense to me, even if I delay treatment until after a further scan.It is the sudden rapid PSA rise that is confusing, unless it is death cry of the cells. I did notice the PSA of Mr fish had a rapid rise after treatment.

Jellies, I don't think the full pelvic treatment was considered when I had salvage RT. In hindsight perhaps the addition of HT with SRT would have been beneficial.

JayneP, thanks.

Thanks Chris

User

Posted 22 Mar 2023 at 11:18

CJ ,if I could be sure that there would be no or very little side effects I would probably go for HT. I said no surgery and had it ,no RT and had it , twice. Definitely no HT, until I read your post 😃.

I think we would all like the chance to go down a cureable route. I will have to see what comes ot of the next meeting. As always, thanks for your inspiration,take care.

Arthur, thanks for your support.

Thanks Chris

Edited by member 22 Mar 2023 at 11:20 | Reason: Not specified

User

Posted 22 Mar 2023 at 11:45

Originally Posted by: Online Community Member

... I didn't know that you couldn't have + and -

I was wrong, you are correct Lyn one can have + and -

This paper gives figures 54% of tumours are completely positive. (I think 10%) are completely negative, with 36% being a mix of positive and negative.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7255040/

I think the paper then goes on to say the percent of PSMA positive metastasis follow the percentage of the primary tumour.

Chris, you should take the following figures with a big pinch of salt:

We know you are not in the 10% of totally PSMA negative, so there is a (54/90=) 60% that all your mets will be detected by PSMA and be susceptible to Lu177 delivered to PSMA. The other 40% is a sliding scale at one end 99% of your mets will be detectable (and if you only have 10 mets that probably means all of them) at the other end of the scale only 1% of your mets would be detectable.

Given all the above I would say you have about an 80% chance of PSMA being useful either for scanning or treatment delivery.

Of course as I like to point out I'm a random guy on the internet with a pocket calculator, not a medic. Discuss treatment with a professional.

Dave

User

Posted 22 Mar 2023 at 11:57

Hi Chris,

I have followed you from my early days on the site. I wish you well with your continuing fight good luck mate.

John,

User

Posted 22 Mar 2023 at 12:13

John , thanks for the reply.

Dave , thanks for the update. I just cannot read, digest and understand medical research as detailed in the link , I just skip to the conclusion and hope it makes sense. My hospital uses the F18 1007 tracer does that make any difference.

Is it a real pocket calculator or an app on a phone 😀.

Thanks Chris

User

Posted 22 Mar 2023 at 12:21

Originally Posted by: Online Community Member

Is it a real pocket calculator or an app on a phone 😀.

Actually I do it all in my head, which gives less reason to trust my opinions.

Dave

User

Posted 23 Mar 2023 at 19:00

Sorry to read this Chris, I feel gutted for you. I hope you find a way forward soon.

Ido4

User

Posted 23 Mar 2023 at 20:03

Ido , I had a very informative conversation with my oncology nurse yesterday. I know the nurses have alot more time than the consultants but without having to ask she ran through alot of information my consultant didn't want to answer.

I have a private sector meeting with my NHS consultant next week to discuss options that the NHS may not offer.

Thanks Chris

User

Posted 23 Mar 2023 at 22:31

Hi Chris

The Docrates Hospital in Helsinki do private Lu-177 even if hormone sensitive ( if they consider it appropriate) However I think it’s out of pocket expensed only

Good luck

Originally Posted by: Online Community Member

Jellies, I don't think the full pelvic treatment was considered when I had salvage RT. In hindsight perhaps the addition of HT with SRT would have been beneficial.

JayneP, thanks.

Thanks Chris

User

Posted 23 Mar 2023 at 23:03

I think the international supply issue will be affecting Helsinki - not sure how long it might take the company to build two new production centres? Also worrying that both production centres are to be built in the USA as apparently the Lutetium must reach the hospital or clinic within 5 days of being made.

It seems Lu177 is not a realistic option for men with PCa at the moment

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

User

Posted 25 Mar 2023 at 12:01

It’s always worth checking if they have supply as they may source from the Spanish production facility.

worth an email for any one considering it. Finland have allowed its use for the hormone sensitive for a few years now so have expertise in the logistics.

quote=LynEyre;279511]

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