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PSA Rising - Next Steps?

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User
Posted 21 Jul 2022 at 12:14

Hi, I am writing in regard to my father.

He was diagnosed with Prostate cancer T4 N1 5+4 in late 2016 and underwent a radical prostatectomy. Unfortunately, the cancer had spread outside of his Prostate and his PSA increased slowly throughout 2017 from 0.45 in February to 6.1 by November 2017. A PET-PSMA scan in October 2017 noted a few different sites where the prostate cancer had spread to:

- Posterior to the right side of the bladder, just medial to the right VUJ
- Two tiny 3mm nodes between the right ureter and right common iliac vessels
- A small left common iliac node
- A tiny para-aortic node at the level L3 vertebral body

At this point, following numerous consultations, dad decided not to have any further treatment but underwent an intensive lifestyle change including cutting out sugar from his diet, regular exercise, vegetable smoothies, turmeric, flaxseed and so on. By June 2018 his PSA dropped to 2.7 then gradually increased back to 6.6 in June 2019. We are still not sure if it was just a coincidence that his PSA stopped increasing rapidly and dropped / remained steady for nearly 2 years or whether it was linked to the change in lifestyle. Over the last 6 months of 2019 his PSA began to rise again, more and more rapidly.

By February 2020, dad’s PSA had increased to around 60. At this point he began the standard hormone treatment. His PSA dropped back to 0.1 and remained low for around 18 months before starting to climb again. Six months ago it was 2, three months ago it was 4 and the most recent PSA test a few weeks ago showed that it had climbed back up to just over 10. A further test last week came back at 15 so it is starting to climb quite rapidly again now.

At the same time as the PSA rising, dad has started to have a few issues going to the toilet. He has been seeing a urologist - initially the issue was thought to be caused by narrowing of the urethra following the prostate removal but an endoscope examination a couple of weeks ago revealed some cancerous growths in the urethra which are obviously causing the issues. Apparently nothing was seen around the sphincter or the bladder itself, just in the urethra in the area where the prostate had been. He is also complaining of general aches and pains and also suffers from Rheumatoid Arthritis so is on methotrexate, sulfasalazine and prednisolone as well as a fair amount of paracetamol and ibuprofen to manage this.

We had an appointment a couple of days ago with dad’s oncologist and he will be starting on Abiraterone in the next couple of weeks. She explained that standard care is to move to one of these additional hormone treatments next and once they stop working she will refer him to the Royal Marsden for further treatment.

He hasn’t had any chemotherapy or radiotherapy to date.

We have been researching the various novel / experimental treatments - BAT, PSMA Lu, SBRT, IMRT, immunotherapy, microbiome yoghurts, PARP inhibitors, Provenge, olaparib, checkpoint inhibitors etc.

I feel that it would be worth speaking to some specialists now regarding further treatment - the hope is that the Abiraterone will reduce the growth in his urethra and relieve his symptoms but I'm thinking that a fresh PSMA-PET scan might be a good idea to identify any other mets that are showing up and look at some kind of radiotherapy to directly remove the growth in his urethra. Also, the Abiraterone will obviously stop working at some point so I think it would be worth looking ahead to other treatments now rather than waiting until you are out of other options.

I read about BAT a few years ago - jumping between high and low testosterone states to shock the cancer. Does anybody have direct experience with this - sounds like a good idea in theory but does it actually work in practice?

https://onlinelibrary.wiley.com/doi/10.1002/pros.24328

Same with PSMA Lu - seems like a groundbreaking treatment and I there are apparently cases where cancers have completely cleared up but does anybody have any direct experience?

https://www.royalmarsden.nhs.uk/royal-marsden-start-offering-lutetium-psma-therapy-treat-advanced-prostate-cancer

 

User
Posted 22 Jul 2022 at 15:16

https://www.nbcnews.com/health/mens-health/new-radiation-therapy-prostate-cancer-reduces-deaths-study-shows-n1269566

In fact, some of the patients who received their last dose in February 2020 still haven’t seen their cancer worsen, said the study’s lead author, Dr. Michael Morris, an oncologist and a prostate cancer section head at Sloan Kettering.

The medication, LU-PSMA-617, works by targeting a protein, prostate-specific membrane antigen (PSMA) that is found on most prostate cancer cells, no matter where they occur, Morris explained.

“Those cancer cells could be in the bones, the lymph nodes or the soft tissues, and the drug seeks them out and docks to protein. It drags a payload with it so when it hooks up to PSMA it is delivering a radioactive source that it brings inside the prostate cancer cell and kills it and neighboring cancer cells as well.”

It’s a remarkable achievement. Very few drugs have been able to show improvement for that level of prostate cancer.

Unfortunately, because the medication doesn’t find all the prostate cancer cells, it isn’t a cure in these late stage patients, Morris said. It’s possible, however, that if the drug is given to patients at an earlier stage of the disease, it might result in a cure, he said.

Another benefit to the new treatment is that very few patients had severe side effects compared to chemotherapy. Some experienced dry mouth, nausea and vomiting, which was serious in only 1 to 2 percent of patients. About one-fourth developed anemia and low platelet counts.

“I think this is a landmark study,” said Dr. Amar Kishan, an assistant professor and chief of genitourinary oncology service at the University of California, Los Angeles, who has no connection to the trial. “It’s a remarkable achievement. Very few drugs have been able to show improvement for that level of prostate cancer.”

This treatment is “like sending a tactical nuclear warhead” into the cancer cells, " Kishan said. “It actually releases radiation over short distances and will nuke anything in its path,” she said.

The next step, Kishan said, would be to look at whether the drug might be even more effective in patients with earlier stage cancers. “But that should be done in a clinical trial,” he added.

This new treatment “has opened up a totally different mindset,” said Dr. Ash Tewari, a professor at the Icahn School of Medicine at Mount Sinai and system chair of the Milton and Carroll Petrie Department of Urology at Mount Sinai, who is not associated with the study. “The beauty of this treatment is it is a molecule that attaches to PSMA and releases a radiation bomb, all without damaging normal cells.”

User
Posted 21 Jul 2022 at 12:14

Hi, I am writing in regard to my father.

He was diagnosed with Prostate cancer T4 N1 5+4 in late 2016 and underwent a radical prostatectomy. Unfortunately, the cancer had spread outside of his Prostate and his PSA increased slowly throughout 2017 from 0.45 in February to 6.1 by November 2017. A PET-PSMA scan in October 2017 noted a few different sites where the prostate cancer had spread to:

- Posterior to the right side of the bladder, just medial to the right VUJ
- Two tiny 3mm nodes between the right ureter and right common iliac vessels
- A small left common iliac node
- A tiny para-aortic node at the level L3 vertebral body

At this point, following numerous consultations, dad decided not to have any further treatment but underwent an intensive lifestyle change including cutting out sugar from his diet, regular exercise, vegetable smoothies, turmeric, flaxseed and so on. By June 2018 his PSA dropped to 2.7 then gradually increased back to 6.6 in June 2019. We are still not sure if it was just a coincidence that his PSA stopped increasing rapidly and dropped / remained steady for nearly 2 years or whether it was linked to the change in lifestyle. Over the last 6 months of 2019 his PSA began to rise again, more and more rapidly.

By February 2020, dad’s PSA had increased to around 60. At this point he began the standard hormone treatment. His PSA dropped back to 0.1 and remained low for around 18 months before starting to climb again. Six months ago it was 2, three months ago it was 4 and the most recent PSA test a few weeks ago showed that it had climbed back up to just over 10. A further test last week came back at 15 so it is starting to climb quite rapidly again now.

At the same time as the PSA rising, dad has started to have a few issues going to the toilet. He has been seeing a urologist - initially the issue was thought to be caused by narrowing of the urethra following the prostate removal but an endoscope examination a couple of weeks ago revealed some cancerous growths in the urethra which are obviously causing the issues. Apparently nothing was seen around the sphincter or the bladder itself, just in the urethra in the area where the prostate had been. He is also complaining of general aches and pains and also suffers from Rheumatoid Arthritis so is on methotrexate, sulfasalazine and prednisolone as well as a fair amount of paracetamol and ibuprofen to manage this.

We had an appointment a couple of days ago with dad’s oncologist and he will be starting on Abiraterone in the next couple of weeks. She explained that standard care is to move to one of these additional hormone treatments next and once they stop working she will refer him to the Royal Marsden for further treatment.

He hasn’t had any chemotherapy or radiotherapy to date.

We have been researching the various novel / experimental treatments - BAT, PSMA Lu, SBRT, IMRT, immunotherapy, microbiome yoghurts, PARP inhibitors, Provenge, olaparib, checkpoint inhibitors etc.

I feel that it would be worth speaking to some specialists now regarding further treatment - the hope is that the Abiraterone will reduce the growth in his urethra and relieve his symptoms but I'm thinking that a fresh PSMA-PET scan might be a good idea to identify any other mets that are showing up and look at some kind of radiotherapy to directly remove the growth in his urethra. Also, the Abiraterone will obviously stop working at some point so I think it would be worth looking ahead to other treatments now rather than waiting until you are out of other options.

I read about BAT a few years ago - jumping between high and low testosterone states to shock the cancer. Does anybody have direct experience with this - sounds like a good idea in theory but does it actually work in practice?

https://onlinelibrary.wiley.com/doi/10.1002/pros.24328

Same with PSMA Lu - seems like a groundbreaking treatment and I there are apparently cases where cancers have completely cleared up but does anybody have any direct experience?

https://www.royalmarsden.nhs.uk/royal-marsden-start-offering-lutetium-psma-therapy-treat-advanced-prostate-cancer

 

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User
Posted 21 Jul 2022 at 16:23

I don't think you will find too many people on this forum as well read up as you are. Though I can think of one or two who may be able to add something.

It is unusual that they did a prostatectomy if he was T4. I can only guess that they didn't know it was T4 until after the operation.

The change in lifestyle, and consequent improvement in PSA amazes me. I usually consider such behaviour as equivalent to wearing a hair shirt as penance for sins, and hoping for divine intervention. However it may actually have worked for a while.

I think any attempt at RT would now be pointless he seems to have bits of cancer all over the place, so they would be blasting everywhere. I did just see a YouTube video of a doctor in the USA who claims success with this approach, but it wasn't a randomised controlled trial, so I take it with a pinch of salt.

As for all the other treatments. I don't know what has been approved by NICE. More advanced HT and chemo are probably on the cards, and better scans. Some of the other treatments, I think you would have to find a trial, but remember a trial is about testing things which are not proven to work, so don't hope for too much.

Dave

User
Posted 21 Jul 2022 at 17:28

I agree with Dave.

Radiotherapy might be used for palliative purposes if a tumour is risking some other major structure such as significant nerves. There are probably too many tumours for radiotherapy to clear them - you'll be in a game of whack-a-mole. I think the limit for this is 3 tumours outside the prostate.

You might want to ask about a referral to somewhere like Royal Marsden now, as that might get you earlier access to trials or new treatments. You might be able to do this by asking them for a second opinion (I'm not sure exactly how this works - the specialist nurses might be able to advise on this).

We did have a member who tried BAT, but it didn't go well. He might have been too near the end to benefit, supposing there's any benefit to be had.

The PSMA Lu177 trials have all been done near end-of-life, where they've added around 4 months to life expectancy. The hope is that with moving the treatment further up-front, the benefit might be substantially better, but I don't know if any trials on that have happened yet. That's the sort of thing the clinicians at Royal Marsden will be up-to-date on.

User
Posted 22 Jul 2022 at 15:12

Dave - yes I think they discovered it was T4 after the prostatectomy.

It's hard to say whether his PSA remaining steady for 2 years was a direct result of his extreme change in lifestyle or just a coincidence. He also came off all of his Rheumatoid medication at the time without symptoms and commented that he felt 10 years younger so maybe there was something that worked for him. Unfortunately it was hard to keep up and he did gradually slip back into normal habits but again it is hard to say whether this is why his PSA began to climb again or if it was all just a coincidence.

Yes I believe that he is probably past a point where radiotherapy would be helpful, it has to be a whole-body type approach now really I guess.

Andy - yes I think we need to have a chat with the Royal Marsden sooner rather than later and at least explore options. The two that stand out are BAT and PSMA Lu177 as mentioned and both seem to suggest that they could be more effective if moved earlier in the treatment but I guess this is difficult if they are not approved for that here in the UK.

With the PSMA Lu177 - from our initial enquiries this treatment costs around £10k per round of treatment and you need 4-6 rounds over 6 months so I presume it won't be offered outside of trials? I read the study that showed promise that it extends life expectancy for around 4 months on average across the trial but then I also read articles like this which claim in some cases the patient can end up disease free. I know everybody responds differently to different treatment but I guess this has to give some hope and be worth further investigation.

https://www.mskcc.org/news/fda-approves-promising-therapy-advanced-prostate

 

Edited by member 22 Jul 2022 at 15:17  | Reason: Not specified

User
Posted 22 Jul 2022 at 15:16

https://www.nbcnews.com/health/mens-health/new-radiation-therapy-prostate-cancer-reduces-deaths-study-shows-n1269566

In fact, some of the patients who received their last dose in February 2020 still haven’t seen their cancer worsen, said the study’s lead author, Dr. Michael Morris, an oncologist and a prostate cancer section head at Sloan Kettering.

The medication, LU-PSMA-617, works by targeting a protein, prostate-specific membrane antigen (PSMA) that is found on most prostate cancer cells, no matter where they occur, Morris explained.

“Those cancer cells could be in the bones, the lymph nodes or the soft tissues, and the drug seeks them out and docks to protein. It drags a payload with it so when it hooks up to PSMA it is delivering a radioactive source that it brings inside the prostate cancer cell and kills it and neighboring cancer cells as well.”

It’s a remarkable achievement. Very few drugs have been able to show improvement for that level of prostate cancer.

Unfortunately, because the medication doesn’t find all the prostate cancer cells, it isn’t a cure in these late stage patients, Morris said. It’s possible, however, that if the drug is given to patients at an earlier stage of the disease, it might result in a cure, he said.

Another benefit to the new treatment is that very few patients had severe side effects compared to chemotherapy. Some experienced dry mouth, nausea and vomiting, which was serious in only 1 to 2 percent of patients. About one-fourth developed anemia and low platelet counts.

“I think this is a landmark study,” said Dr. Amar Kishan, an assistant professor and chief of genitourinary oncology service at the University of California, Los Angeles, who has no connection to the trial. “It’s a remarkable achievement. Very few drugs have been able to show improvement for that level of prostate cancer.”

This treatment is “like sending a tactical nuclear warhead” into the cancer cells, " Kishan said. “It actually releases radiation over short distances and will nuke anything in its path,” she said.

The next step, Kishan said, would be to look at whether the drug might be even more effective in patients with earlier stage cancers. “But that should be done in a clinical trial,” he added.

This new treatment “has opened up a totally different mindset,” said Dr. Ash Tewari, a professor at the Icahn School of Medicine at Mount Sinai and system chair of the Milton and Carroll Petrie Department of Urology at Mount Sinai, who is not associated with the study. “The beauty of this treatment is it is a molecule that attaches to PSMA and releases a radiation bomb, all without damaging normal cells.”

User
Posted 22 Jul 2022 at 16:06
Lu177 isn't currently available to anyone in the UK - there is some kind of supply problem. When that is sorted out, it will be available to people who can pay for it - there is only one hospital involved in a trial at the moment. Lu177 only works for men who are PSMA+ so the first step is a PSMA scan to see whether there is any take-up - if not, no point paying. We have had some members here who have had Lu177 but not very successfully so far.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 22 Jul 2022 at 20:34

Hi Broshnat

NHS Southampton provide Lutetium 177 free to patients referred by their clinical team. I'm not sure how to upload their nhs patient leaflet but if you Google you will find it easily.

I also contacted NICE who told me that lutetium-177 is due to be licenced in the UK this November.

 

We are interested in pursuing this because if it works you can have more than one cycle.

Best wishes to your dad. X

Edited by member 22 Jul 2022 at 20:35  | Reason: Not specified

User
Posted 24 Jul 2022 at 10:13

Thanks for the responses - I will look into the Lutetium 177 treatment and contact NHS Southampton.

 

On a slightly different note, we have been looking into the various options with hormone therapies and trying to understand the best path and combination moving forward.

Dad was put on Prostrap in Feb 2020 which, as I say, was effective for around 18 months but his PSA has slowly increased back up to around 15 currently. The plan is to start him on Abiraterone next week.

Reading some of the threads here I came across bicalutamide / Casodex with some people talking about a further 12 months or more on this until PSA starts to progress again.

I understand that each person reacts differently to treatments and their cancer will progress differently but I wonder if many studies have been done or if there is much personal experience in different routes and combinations of therapies.

Using a hypothetical example, if the average person has say 2 years on ADT before their PSA starts to rise then 12 months on Casodex then 12 months on Abiraterone then theoretically that would give them 4 years using this progression of treatments until PSA would start to increase again.

If they were put on ADT plus Casodex plus Abiraterone right from the start would they expect to have the same 4 years before the PSA starts to increase or is there some benefit or penalty for staging the treatments in an order, one after the other once the previous one no longer works?

Another thing I have been reading about is anti androgen withdrawal response (AAWR) - the phenomenon that in some cases coming off the hormone therapy and the androgen levels returning to normal actually overwhelms any cancer cells that have adapted to survive in a low androgen level environment. Again, people have apparently seen PSA levels drop after coming off hormone therapy and remain low, sometimes for years.

This makes some sense and we have also read about bipolar androgen therapy (BAT) as mentioned which is an extreme version of this - cycling the body between high and low androgen environments to alternately overwhelm and starve the cancer and theoretically stop it from getting to a stage where it has adapted enough to no longer be controlled by hormone therapy. This video is quite technical but interesting, the issue with BAT seems to be that it only helps in around 40% of cases.

https://www.urotoday.com/video-lectures/asco-gu-2022/video/2563-the-state-of-bipolar-androgen-therapy-in-prostate-cancer-emmanuel-antonarakis.html

I guess the hope is that if you can put off Abiraterone for as long as possible and keep the PSA at bay for longer using other options then it buys you more time - not sure if that is a sensible way to look at things or not and whether the survival data supports this though or whether you are better going on Abiraterone as soon as possible?

I believe it is not possible to name specific consultants here but I would like to find an oncologist who could give a second opinion and come up with a tailored treatment plan for dad.

Edited by member 24 Jul 2022 at 10:32  | Reason: Not specified

User
Posted 24 Jul 2022 at 11:59

You are confusing two things, I think. Traditionally, when HT starts to fail bicalutimide can be added and this sometimes gives the HT a bit of a temporary boost (usually 6 to 12 months at most). Then the bical would be stopped resulting in AAWR for some men, which could help for a few months.

The addition and then withdrawal of bical could potentially delay the need for chemo by 12 to 18 months but this was in the days when chemo was an end of life option and abi, enza and apa were still a dream.

You don't get an AAWR by stopping Prostap, Zoladex, abiraterone, etc. Adding bical may be another option after your dad's abiraterone fails.

Re delaying abiraterone until later because it has a finite effectiveness- the trials have shown the opposite to be true - that's why so many have been campaigning for the right to have abi/enza/apa from diagnosis.
If you want to be sure you are getting the best for your dad, perhaps ask why they have selected abiraterone rather than enza or apalutimide which most accept are more effective than abiraterone

Edited by member 24 Jul 2022 at 22:02  | Reason: Not specified

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

User
Posted 24 Jul 2022 at 12:16

Ok so bicalutamide is really another (less preferred) option alongside abiraterone / enzalutamide / apalutamide rather than something that might sit in between.

To be honest, I am not sure that much thought has been put in to using abiraterone vs the others. We were told that they are all much of a muchness.

From what I have read they act in quite different ways - abi basically lowers testosterone production in adrenal glands and other areas that the basic ADT doesn't whilst the other treatments act to block the testosterone from binding to the cell receptors.

With this in mind, I would imagine that the treatments would differ based on what seems to be happening. For example, if testosterone levels remain low (less than 50 ng/DL) but the cancer is progressing then this would suggest that the cells are able to exist in lower testosterone levels by increasing receptors so something like enzalutamide would be more effective. If testosterone levels have started to climb then abiraterone might be more effective initially as it reduces testosterone production outside of the testes and would presumably bring overall testosterone levels back down to a point to be effective. This is all just theorising though based on what I've read - there doesn't appear to be any real logic or preference being applied to the choice, in our case anyway?

I have read studies that compare having abiraterone first followed by enzalutamide vs the other way round and seemed to slightly favour abi followed by enza but dad's oncologist said that isn't an option in the UK anyway - it's one or the other? As they act in different ways there would presumably be some benefit to being on both although I guess that increases the risk of side effects and so on.

User
Posted 24 Jul 2022 at 14:23

Originally Posted by: Online Community Member
if testosterone levels remain low (less than 50 ng/DL)

Converting to SI units used outside the US, that's 1.7nmol/L (the top end of what's considered castrate level).

Although Abiraterone works differently from the *utamides, Abiraterone seems to be similarly effective as the newer *utamides, although we have more data on Abiraterone usage due to it being around for longer. Abirterone is also an androgen reception blocker like the *utamides, although that's not its main effect.

In the UK, you can only have one of the novel hormone therapy drugs on the NHS during your treatment (with the exception that you can switch in the first 3 months if side effects are unacceptable, and there have been trials which have used more than one of these drugs). This is primarily a cost issue, so it might change when Abiraterone comes off patent in the UK shortly. However, serial use of the drugs in other countries has only shown about 20% of men benefit, because for most patients, when one stops working, they all stop working.

Edited by member 24 Jul 2022 at 14:26  | Reason: Not specified

User
Posted 26 Jul 2022 at 10:38

Hi,

Not aware L177 has been claimed to cure advanced prostate cancer.It can delay progression and give you extended time of good quality of life.

Norm

User
Posted 19 Oct 2022 at 12:59

Currently bring treated with Olaparib, 18 months - 0.1 PSA. No chemo - prostate intact.

Thinking of luPSMA later - or even ac225 combo. Have to wait, Petscan hardly detects anything below 0.2.

BAT is very interesting, but you must have AR copy gain. 

I have regularily rtPCR for my PTEN mutation, currently no signals. This is another way to track the the progression.

 

 

 

 
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