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Aussieflicker

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Aussieflicker

Hi all

I'm 59, and was diagnosed in Nov 2015, PSA 10.2, Gleason 4+3. Had robotic in Jan 2016, had gotten into lymph nodes but PSA dropped to .068 

Scans have shown a microtumour in spine. Specialist said too small to deal with.

PSA has been doubling every 3 months, but stayed the same on last 2 tests (1.04), hopefully next test will be similar. No symptoms, am continent and sex ok - so pretty lucky.

Question is, if it does continue to rise, when should I consider the next stage of treatment and should it be ADT or ADT+Chemo? There does not seem to be much concurrence out there.

any thoughts would be welcome.

 

Jeremy

 

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What a bummer.  But all is not lost - good that all you plumbing is in order.  My experience was similar in that after gleason 7 and a radical PSA was 4.  (it was 5.6 - two months prior to surgery) A PET scan showed tumors in lymph nodes well away from the prostate bed.   That was 13 years ago when I was 58).  I am still asymptomatic (and scans show lots of mets in my spine) but have had chemo recently and pca is probably in the 40s and I am starting one of the new drugs in a week or so.   The thinking then (2005) was wait and see as quality of life is important.  Since then times have changed and some men now go straight to chemo.  In my case PSA took 5 years to get to 22 when I was put onto ADT.   

I suggest you get involved with the biggest cancer specialist hospital available  eg in Melbourne it is the Peter MacCallum CC.  The experts are there and you won't be overcharged.  The oncologists in these places would see many men like you and would have a fair idea of what to do next.  Because there are so many new treatment options available now - sequencing is a quandary but go where there experts are and you won't be ripped off.  Getting a referral may take time - but you have plenty of time to decide what to do next.

Keep fit - join a gym and go two or three times a week - exercise is medicine!!  I also make up a juice with fruit and veggies every second day and drink half on the day and the rest the next day - not sure if it keeping things at bay but it gives me confidence in that I am doing something for my health 

 

Cheers Chalkie

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Aussieflicker

Tha ks, Chalkie.

Doing a bit of cycling in and walking, diet good.

I' m with the APCR Prostate Cancer Centre , allied with Peter Mac

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Yesterday ..... per the most recent studies like Latitude, Stampede , Prospect, CHAARTED etc. The earlier you start chemo &/or second line anti-androgens the better.

 

Check the post Jim M made re. Alicia Morgans' article and her discussion with Chuck Ryan from Uro Today. You should listen to that ... and probably need to get your med onc to listen to it too!

https://www.urotoday.com/video-lectures/mcrpc-treatment/video/mediaitem/784-embedded-media2017-06-21-00-48-43.html

https://www.urotoday.com/center-of-excellence/advanced-prostate-cancer/from-the-editor/97457-crashing-into-progress-new-findings-meet-old-habits.html?utm_source=newsletter_4746&utm_medium=email&utm_campaign=new-ideas-and-direction-in-gu-oncology

And if you don't have a med onc and are still seeing your urologist, then you need to make a change the day before yesterday!

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Aussieflicker,

 

Presume your prostate removed in robotic and is there any cancer left in the lymph nodes?

Is the microtumour in the spine the only detectable cancer?

If so another possible treatment may be Radium 223 (Xofigo) if we can get it on PBS soon.

Hopefully that may be early 2018 but nothing is certain.

Xofigo specially designed for cancer in the bones.

I currently have lymph node tumour that Enzalutamide from clinical trial is controlling very well.

The timing, sequencing  and combining of chemo/abi/enza is not fully resolved I gather although some indications from trials are there.

Side effects are part of the equation as are the wide range of responses by patients to these various treatment options.

Agree you should have medical oncologist if not already.

 

Regards        Tony Max

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stevecavill

Hi Jeremy,

if there is literally one visible bone met, that is referred to as oligometastatic disease.  there is good evidence that SBRT (stereotactic body radiation therapy)  can treat that.  I would speak to a radiation oncologist. Saying "too small to deal with" makes no sense to me again all.

Good luck, Steve

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Xofigo is usually appropriate for more advanced disease.

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Charles (Chuck) Maack

As noted by stevecavill, radiation should be looked into, but possibly targeted radiation specifically to the location of the tumor may be most appropriate since even SBRT is for the prostatic bed and periphery, not to other locations.  As to Xofigo, even if available is designed both to hopefully eradicate migrated cancer cells and relieve pain being experienced because of more developed metastatic disease.  Should PSA not drop back down following targeted radiation, then there may be other similar cancer cell presence not yet developing to tumor size in other locations not yet visible to most imaging forms.  That would be when ADT w/early chemo should be considered. 

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Aussieflicker
14 hours ago, tonymax said:

Aussieflicker,

 

Presume your prostate removed in robotic and is there any cancer left in the lymph nodes?

Is the microtumour in the spine the only detectable cancer?

If so another possible treatment may be Radium 223 (Xofigo) if we can get it on PBS soon.

Hopefully that may be early 2018 but nothing is certain.

Xofigo specially designed for cancer in the bones.

I currently have lymph node tumour that Enzalutamide from clinical trial is controlling very well.

The timing, sequencing  and combining of chemo/abi/enza is not fully resolved I gather although some indications from trials are there.

Side effects are part of the equation as are the wide range of responses by patients to these various treatment options.

Agree you should have medical oncologist if not already.

 

Regards        Tony Max

Thanks, Tony - yes only spine - detected using PSMA scan.

Medical oncologist reviewing case.

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alanbarlee

(I like the hat!)

What was your post-op Gleason score? If confirmed 4+3 or higher, that would be a signal that more aggressive treatment to hit a rising PSA with nodal mets might be a good topic to discuss with your medonc. 

 

Based on some great trial results over a year ago, there seems to be rapidly widening use of 6 rounds of docetaxel at the start of ADT in the context of metastatic cancer. You might also discuss the benefit of adding an anti-androgen  (e.g. Cosudex) to single agent ADT (and also discuss the pros and cons of an GNRH antagonist like Ananandron with an GHRH agonist like Zoladex during the discussion). An added possibility to raise is inclusion of Avodart - an inhibitor of serum testerosterone reduction to DHT - a more potent PCa fuel than T. 

 

 My personal belief is that there's value in hitting multiple disease growth pathways early with combination therapy before difficult-to-treat mutations get a chance to kick in.

 

Keep us posted - and best wishes,

 

Alan

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Aussieflicker

Hi Alan - tks for getting back. Do't think I had a score post-op, only before from biopsy. Surgeon performed an LND at same time as prostectomy. Will check up.

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Patrick Turner

Jeremy asked  "Question is, if it does continue to rise, when should I consider the next stage of treatment and should it be ADT or ADT+Chemo? There does not seem to be much concurrence out there.

any thoughts would be welcome."

 

If your next Psa shows a rise, I'd ask for ADT if your doctor does not want to give it. ADT is chemical castration that is painless, but side effects are occasional hot flushes like menopausal women, and mild loss of libido; you begin thinking about sex every 5 minutes instead of every 1 minute. For maybe 4 years, you might still work OK, but orgasms become less intense, and harder to achieve, and then Roger fills up with fibroids maybe it point to ground like a brass garden tap. Its length halves, and if women see you like this they think youse ain't the man you was, and unless you have a marriage where sexual failing is tolerated and accepted, the marriage could fail, but fact is that nearly all women go cold and pause from men when their hormones cease, so these horrible life events and body changes cannot be avoided and doctors just never ever tell you the worst that is going to happen with ADT. I had ADT for 6 months to reduce PG to smaller target size for 70 Greys of EBRT which wasn't enough to kill Pca in PG. But RT or surgery affects nerves for sex functions, and so does a long period of ADT. I had a pause in 2012 after 2 years, testosterone shot back to 20 in normal range 8 to 38, and sex became really good again and bike speed increased again. But Psa went from 0.08 to 8.0 in 6 months, so I went straight back to ADT. I had another ADT pause in 2015, and testosterone went up, but not as fast or as far as before, so balls had become a bit wrecked. Psa went from low to 6.0 in a few months so no more pauses in ADT seem sensible. It would have been much cheaper for Guv to have by balls cut out, but drug companies insist the drugs work better than surgery. They would say that, now would they not? 

 

With rising Psa after RP, and with mets like you say you have, from little things, big things grow, and If I were you, I would assume Pca is going to kill me unless proven otherwise. I had a Gleason 9+9, a truly bad score "high risk" PG tumour which docs tried to cut out but once they had me open they said to each other "we can't proceed with this man because we'd make a real big mess of him". My Psa had only just gone over 5 so I had big amount of Pca which produced a low Psa. I should have been operated when Psa was less than 3.0 in say 2004, when I bet a biopsy would have found a low Gleason score tumor. But this would not have meant it had not already spread.

But you will not read the stories of blokes who have an RP, Psa goes down, ands stays down. I found such men don't like talking about it because it takes them back to a painful worrying time they need to forget.

 

My Canberra docs and scanners found Pca mets in bones this year and more lymph nodes, and these will kill me unless some treatment is invented which has a lasting fix effect with few side effects. 

I have had ADT with Eligard and then Lucrin since 2010, and Roger officially died about 3 years ago. I could not jerk off, and if I tried a nice slow but gentle jerk off the skin of the head pulled away from the shaft, because absence of testosterone just makes Roger decide to atrophy, and to become fragile. But I am continent. I have uncomfortable short useless erections each morning. All nerves for pleasure are dead, and Roger is much more fragile than any doctors like to talk about. After age 22, and despite numerous attempts to marry, and operating as an Expert of Pharking, and giving them just what they wanted, even with the most difficult to please women, I never found one who would or could stay with any man, and I have no family and no partner, and, un-strangely, no female friends except an older sister who narrowly dodged breast cancer. The other sister died of ovarian. So all the changes to my body did not make any partner angry or depressed, or hateful.

I will be on ADT for the rest of my life. But it begins to fail to work after a few years, and in my case in 2016. I had Cosadex as well as ADT but that only worked for 6 months, and relentlessly, Psa began to rise again. I am now taking Zytiga, ie abiraterone, a much stronger anti hormone drug, costs Unkel Guv $43,000 a year, and Lucrin monthy costs about $4,800.

I was diagnosed at 62, 2009, and in 2008, one dopey GP said "Your'e too healthy to have cancer" but my Psa was over 4, and I was just waiting for cancer to attack, and it did.

During this long time living with this disease, I have cycled about 130,000km, and continue is, and last week I did 270km, and yesterday and sunday I did 80km each day, and I feel real well, but I know Puff the Magic Prostate Grenade is very slowly exploding.

 

Your doctors might insist you have ADT, because they know how chemo does not work, and how bad the side effects are. They know without doing anything, you'd be dead in 5 years, with the last 2 years of pain and agony on morphine. ppl have told me heroin is better, may as well go out a drug addict cos there SFA else that will help. But one friend's father of 86 drowned to death from fluid generation in his lungs because Pca invaded. Once it gets everywhere, its time to say good bye.

So doctors try ADT, and when that fails, stronger and more expensive ADT, and when that fails its docataxel ie, chemo, which then makes you entitled to try the latest targeted systemic radiation with Lutetium177 and maybe radium223.  These two late stage treatments are considered to have too many side effects for those in early stage disease, and probably will not be ever given to anyone who has not even begun ADT, let alone chemo.

Docs do not know yet the full story about Pca progression after Lu177 or Radium223. Lu177 is quite effective reducing soft tissue pca tumours, but less so with bone tumors. Radium223 seems to work better on bones but I read in last few days that average extension to time alive was only 5 months, with higher side effects.

 

Most men have mets which produce Psa like the original tumor, so the mets show up in PsMa scans which have made detection of mets much better because it shows the mets years before most previous CT or Xrays showed. Up to 2 years ago, many blokes did not think they had any mets  after having PG removed; Psa went below 0.01, then started rising, and anything above 0.2 is a worry, because "just where is the SOB". Now the new PsMa scans are just giving the grim reality of spread some years earlier than was the case before 2016. There are unlucky men whose mets do not generate psa so their mets remain unseen until they form large lesions in bones etc, seen in Xrays, CTs, and the older type scans which showed such lesions when it was far too late to save a bloke. The targeted RT with Lu177 cannot be targeted to mets which don't make psa, so it does not work at all without psa. Nobody can assume all mets always have psa, and some mets produce mets and as the mutation process continues, the cancer becomes very different to the original tumor, and I assume there is a time when no matter what I know or what doctors do the cancer is just gonna win. Just why do 30% of those diagnosed die? They all tried "fighting" and all lost. The figures for 5 year survival are good, but 10 year figures much worse, and probably twice as bad as stated because death certificates have "lung cancer" or "cardiac failure" or "liver cancer" when it was Pca which had spread, causing so much damage somewhere that life could not continue.

 

One friend in Melbourne friend had RP at 53, Psa went low, bounced back up, so he had full IMRT to the operation site at Epworth, Psa went down, bounced back up, and now he's on ADT, psa is down and probably more local RT to PG is too unlikely to succeed, and maybe there are mets which are still too small for even PsMa to detect.

So far, "immune therapy" seems a waste of time, but one Dr Yiu in ACT has successfully doing something like it to a few ppl with rare cancers which affect 30% of all cancer patients. Most just die. When I heard what Yiu could do, I phoned his office to see if there was any possibility of being a patient and I was told I had to be privately insured. I said I had more than enough in bank to spend, and thus function as having my own insurance company to look after myself, but they didn't want to talk, so they distrust anyone who phones because maybe they know ppl promise money, but lie about it, so they'll only deal if you are insured and know the insurance company will pay because ordinary ppl might die, or just not pay for 101 reasons. I could pay in advance, but they still insisted on me having insurance.

They need to be sure they get paid, no ifs or buts. I doubt I could get private insurance now. So for the best private hospital treatments you have to pay up big time. I concluded Yiu seemed to be taking cancer cell samples out, and having a team in a lab analyse cells to work out what chemo drug works best, and then he was getting chemo to be 10 times more effective and more likely to work, and actually get remission in patients. There was a smiling 47yo in newspaper after he'd battled gall bladder cancer and won over a 5 year period. He had a family to support. His costs were quoted at $230 a day, but for how long was not stated, a typical journalist shortcoming. Real immune therapy involves removing samples of cancer cells, and a team in labs analyses DNA makes changes to DNA and then re-injects altered cells which then get your body's immune system to recognise the cancer as the enemy, not friend, as it does now with cancer cells. If our immune systems worked better, cancer would soon be stopped, but some cancers overwhelm the immune system; it all to complex to explain here, and I ain't a qualified bio-chemist. 

As soon as a team of people have to work in a lab to just fix you, then the expense for such high paid ppl and gear goes skyward, hundreds of $$ per DAY. 

So immune therapy for all at a public hospital is not going to happen soon.

If anyone knew they could buy a cancer cure for $200,000, they'd line up in their hundreds. Those who could not find $200,000 would just die, and be unable to pay off a loan for $200,000. Life is cruel, there is no doubt, and I was initially excited about Lu177, but the full story about patients in last year's trial at Peter mac is inconclusive because the trial finished only 10 months ago, and we need to know what happens 2, 4, 8 years later. Big Medicine likes to present the latest hope, and people like to pay for extended time but whether its worth it is a good question. People like to think there will be a magical break through discovery that stops Pca in its tracks without side effects, but its still sensible to plan for your death, and then later you'll have the pleasure of un-planning that if magic happens.

 

Some say Big Medicine would be very troubled in a cancer cure was found because so many doctors and drug companies would be made redundant. So hence the conspiracy theory that Big M knows what cures, but won't give it to us because it would put too many rich ppl out in the street.

When I found out last July I had a pile of mets, it was what I expected, and was not upset as much as my oncologist who said "this is a horrible scan" and he is powerless to do much about it. He has a horrible job dealing each day with ppl he knows will die soon, and he is a life extender, not a curer, so what effect it has on him is anyone's guess.

Despite my cancer, I had a time where psa dipped below 0.5 for a few months at end of 2016, and I had both knees replaced due to bad knee genes allowing then to wear out prematurely, forcing me from building work in 1993. The op last February was successful, cycling speeds have risen, and both doc and I got a win, and so while my Psa slowly works to kill me I will have better mobility and can walk without pain, and ride further, like it was 4 years ago before knees became chronic.

So always look on the bright side of life and learn to accept that life is merely temporary, and consider the thousands or millions who have a far worse life than us.

Patrick Turner.

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Aussieflicker

Wow, Patrick - thanks for your considered reply. Food for thought and good luck with all this - at least the knees are better!

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Patrick Turner

 Alan said,  My personal belief is that there's value in hitting multiple disease growth pathways early with combination therapy before difficult-to-treat mutations get a chance to kick in.

 

I could say that right after my diagnosis in Dec 2009, Gleason 9, 9 positive biop samples, when Psa was 6.3, docs could have started me on chemo and ADT straightaway. But it was April 4 when I had unsuccessful attempt at open RP. Then ADT was started. PG was 3 times normal size, just a big soft puffy ball, no hard lumps were detected in DRE. MRIs were not yet available. But seminal vesicles and lower lymph nodes were removed, and no spread outside PG was found in samples of what they removed, so maybe if there was, it was so small it could not be seen. The 4 month delay between diagnosis and surgery attempt probably did not cause a spread, and Psa only rose to 8.8, so doubling time was maybe 12 months. 

But the earlier someone starts chemo and whatever else, the sooner the cancer learns to outwit everything, and methinks the idea that drugs used should be spread out over time is maybe OK, and makes not much difference to an outcome, ie, Pca outwits therapy no matter what docs do. Chemo is the worst treatment for side effects, and a friend had some for a throat cancer in addition to RT before his Pca diagnosis. The chemo really knocked him around, and my sister who died in 2005 had 4 rounds of chemo for ovarian C, which extended her life about 8 months only. I had a customer who had 4 chemo treats for his pancreatic C, it almost did nothing, except make make him feel like poop. I met a customer who had 70Grey EBRT for a Gleason 6 some 10 years before he told me; it worked.

 

Unfortunately, in 2010, docs in ACT were unaware that St Vincents in Sydney had said the success rate for standard 70Grey of EBRT to Gleason9+ at PG has only 10% chance of killing all cancer cells. But they didn't say what the chance was if ADT was added, but ACT docs and others said the ADT makes EBRT more effective. I saw little evidence of that and PG condition was getting worse, although there was no spread to bladder, rectum etc. PG was swollen, I was waking 6 times a night. I was sent to Epworth to get another 31Grey to PG in July 2016, and scan in July 2017 suggests size of tumour at PG has reduced, and still no spread to local organs, so the total of 101Grey did seem ENOUGH and who know what is really enough medicine or RT levels? Brachytherapy would have been better, but in 2010, it wasn't done in ACT, or else I was never told it was, and I generally knew SFA about the whole damn Pca thing. Brachy therapy can deliver 155Grey, and it usually kills most  Pca cells, regardless of Gleason score. It is supposed to do less damage to nerves, and rectum which get fried to cause radiation colitis where you become a gas powered poop ejector for a month, and then a year later your rectum bleeds. Mine did, but that's all calmed down, but bowels ain't what they used to be so they don't do final processing as well, and I am now losing weight without trying to stop putting it on, something which ADT tends to make a man do. Brachy was being done in 2009, but was in expensive private hospitals it seems. But that word "kills most cells" is a dreadful term, because usually there are survivor cells and the same goes for survivors from chemo. Such cells are tickled pink by doctors efforts, and they are the ones to become dominant in their future progression, and may be impossible to treat with anything. 

Unfortunately, cancer treatment protocol and sequence of drugs etc has been determined well before anyone turns up with a pox in his PG. So when we do turn up, we are not fully informed by docs who have 20 patients to talk to before lunchtime. Reading matter given is somewhat unhelpful. 

So in hindsight, everyone thinks more could have been done. The reality is that we all end up to where we are NOW, and beliefs in so many medical things are irrelevant, so I just like to distract myself from what is an appalling list of things in life I seemed to have missed out on. But I could have had a very much worse life, oh, so easy, that one.

I'll ride about 60km tomorrow, then get back to re-editing my 60MB website. I enjoy the people I meet who are not dominated by their damn mobile phones, or by a whole pile of fake theories more numerous than fake news. I much like ABC classic FM and to hell with keeping connected to the world for 168 hours a week - its far too depressing.  

Keep well, but I know that's difficult,

Patrick Turner

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  • 1 year later...
Aussieflicker

Update - had radio in Jan 18 - with ADT  - next 9 months, PSA undetectable - WOOOHOOO!

Now that testosterone level is back to normal however - Feb 19 a low level of 0.114 :(

So see what next level is in May and decide what to to then, I guess.

Maintain the rage!!! :)

 

 

 

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  • 3 months later...
Aussieflicker

Had the May test and, of course, the level has doubled in the 3 months to .224.

So APCR suggest wait another 3 months, if doubled again, then have another PSMA PET to if there's anything visible.

If not - then back on the ADT, I suppose.

 

Would anyone who has a similar experience as me: Prostectomy -> Recurrence -> Radio + ADT -> 0 psa - > off ADT -> Recurrence like to comment?

 

Thanks in advance

 

J

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