NEXT STEP AFTER ZOLADEX

[timbaker]

HI ALL,

After a couple of rises in PSA is appears the old Zoladex/Casodex combo has started to become ineffective  and if the trend continues I'm likely to move on to the next treatment option shortly.  I've been interested in the discussion around Radium 223a coming under the PBS and the various conditions in which it will be made available. As far as I am aware the next step for me would be Enzalutamide (Xtandi) but I wonder if there is an argument in going straight to Radium 223a if I met the requirements. 

A quick bit of background. I was diagnosed in July 2015 with a PSA of 120, Gleason score 9 with mets in my right femur and a left rib bone. Chemo and ADT reduced the cancer considerably and dropped PSA to a low of 0.3. Over the next year it slowly rose to 3.2  on Zoladex alone, at which point my oncologist recommended adding Casodex, which worked well, PSA dropping to 0.8. I'd been complaining about the effects of Zoladex - mood swings, depression, lethargy - and he agreed to me taking a break from it. I ended up having six months off Zoladex (which was amazing), on Casodex alone, but when PSA eventually rose back up to 8 we agreed to go back on the Zoladex in October 2017.

I had a PSMA PET scan soon after which showed, despite the rising PSA and six months off Zoladex, the lesion had completely gone from my right femur, and prostate and lymph nodes were also clear, with only one small spot on the rib, which hadn't progressed since diagnosis. I've been going pretty hard on a plant-based diet, meditation, exercise, various herbs and supplements, two trips to the Gawler Foundation, and at this point was beginning to believe that I might be winning, despite all medical advice that this was unlikely. Since then, PSA has risen back up to 7 and the assumption is that the cancer is now castrate resistant.

I'm interested in other men's experiences at this stage of treatment. It seems to me the effective life you get out of that first form of hormone therapy is a big determinant of overall survival time. I've heard 18 month average for CR M PCa, though I have never felt bound by statistical averages. At age 53, with two kids, 16 and 12, and currently in good health in every other way, exercising regularly, surfing, yoga, pilates, gym, and committed to a healthy diet and lifestyle, I'm determined to hang around as long as possible. But it's tough sometimes to remain disciplined when the message you get from mainstream medicine is that all your efforts will likely make little difference. 

In short, after zoladex am I likely to be able to access radium 223a under the PBS or is that jumping the gun? With one small met, I am hoping it might be more targeted and effective and less debilitating than Xtandi. I've also been told stereotactic radiation might be effective if next scans show a similar clinical picture, with just the one met.

Any advice gratefully received. 

cheers, 

Tim

 

 

[Kezza2]

Mate with only one small met I don't think you have a lot to worry about, unless you are looking for a complete cure because there aint no such thing, there's only remission.  If your next PET still shows no lymph involvement and only one bone met I would be talking to a radiation onc about stereotactic radiation to knock it off and keep the Zytiga, Xtandi, and Radium 223 up your sleeve for when you really need them, but I'm not a doctor so seek additional professional advice. 

[Patrick Turner]

1 hour ago, timbaker said:

HI ALL,

After a couple of rises in PSA is appears the old Zoladex/Casodex combo has started to become ineffective  and if the trend continues I'm likely to move on to the next treatment option shortly.

I was diagnosed 2009 with Gleason 9 although Psa had only just gone over 5.5. Docs opened me up, found too much cancer, took out two lower lymph nodes and other tissue samples and found no spread. I was in the 1% of patients who could not have an RP - so the doc told me - but that could have been a lie, maybe more like me. I should had biopsy at Psa 3 when I bet they would have found a Gleason 5 or 6 in 2005.

Well, I had standard 70Gy EBRT to PG, and I'm still on Lucrin, ie, ADT injected monthly, and that alone worked until 2016, then it failed, and I went to Melbourne for stereotactic with Calypso at Epworth for an additional 30Gy to PG but two upper lymph nodes were found in preceding PsMa scan. The scan can only see down to tumor sizes of 2mm, so I figured I could have thousands of tiny mets. The two mets found were given 45Gy each. I also started Cosadex at time of 2016 IMRT and the effects lasted only 7 months, and Psa went to 0.4 then again went over 5. The 2017 scan 9 months ago showed many mets, maybe 20, so that there definitely may be thousands. I was put on Zytiga, abiraterone, and its now just beginning to fade after getting Psa 7 last July to 2.0 in Dec, but was 2.3 last time, expecting 3 in a month and so I just get 8mths from that. I may be given Xtandi, enzalutamide, to see if that works for awhile before Docetaxel, ie, chemo. 

So chemo is unavoidable, and maybe I "qualify" to get both Lu117 and maybe Ra223 but the cancer is likely to mutate its way around whatever obstacles the doctors put in its way, and treats will be in private hospitals so huge expense is needed.

 

I'm 70, and today I cycled 76km around Canberra. My diet is 95% vegetarian and I presently fast 2 days a week when I don't cycle, but I am doing an average of 250km a week, at 22kph around town, 25kph on country roads, so I'll stop living this rotten anti social life of exercise and antisocial diet when the cancer symptoms actually begin, and when treatment side effects combine to shove me off the bike, and if I end up in serous pain, I hope the morphine works, and I may beg for an overdose. I just don't know when it will be, but I read where 95% die within 5 years after discovery of bone mets based on CT scans finding large lesions in bones. PsMa is detecting the same lesions when they are smaller, so maybe I live 7 years from 2017. Its extremely optimistic to say that, maybe I am dead in 3 years.

Lu117 has been said to extend life by median amount of 13 months, and I don't know what Ra223 gives, but it seems NONE of these applied remedies lead to remission except in a tiny number of cases.

 

Some men want Lu117 as soon as they are diagnosed. Docs don't agree. You might get a good result initially, but there are going to be survivor cells after RT so the cancer is seldom ever totally killed off by any known treatment, and survivors are known to be more untreatable, so thus a protocol of successive treatments are given to maximize QOL.  

 

A healthy active lifestyle is a nice thing to enjoy, even when it is masochistic, ie, I'll cycle up hills in serious pain, gasping for breath, heart barely able to stay in my chest, and I hear the stupid voice saying "oh what fun" and a sillier voice saying "this'll make the cancer quit" but cancer doesn't quit, or take any notice of our humble human activities and it makes ppl do all sorts of things because they realise they just ain't got time to dither about, so enjoy it while you can. There are a large number of ppl who get depressed about Nature taking its unwelcome course in our bodies. My guess is they never write to groups like us; they just see gloom, and can't handle the idea that "the game's up pal".

 

I'll accept what the docs have for me. There are not many new treats coming soon enough to be useful to cure  my Pca. We were all given a certain DNA and Nature just could not arrange perfect DNA for any of us so none of us get to live forever. I saw my father, sister die of cancer at 60, and I saw so many other folks go down, and despite their own efforts to counter it. So from age 50 I began to think I'd be lucky to see 60, and I asked myself "when's my turn for cancer?" and I didn't have to wait long, and the medical system failed me badly even with yearly Psa tests from 50 onwards. Prevention systems fail, shite happens, and Pca kills 30% of all men diagnosed.

 

Even if they docs had treated my PG better in 2009, they didn't know if I had Pca spread or not, but NEVER assume you have no spread until you have had successful PG treatment, then found no Psa 5 YEARS later.

 

I never seemed to feel depressed after the treatments of RT and ADT completely exterminated all ability to have and enjoy sex, and maybe many men find it gob-smacking to be neutered, especially when young enough to make themselves and a wife happy. After a brief marriage of 18 months after 1976, I figured I'd survive OK if I had not one single female ever touch me again. Well, after my wife of 22 fled for no reason, I wasn't the victim of the bottle or despair but I wanted them to commit to us, or to something, but none would, or could, and I found I could be a nice man but utterly non valued as anyone could be, but so what, life could be just fine without the liabilities of having a family. I've shared house with ppl who have been so depressed that they could not get out of the house some days, and one lady said one day "I hate love" and I thought, Hmm, OK, nothin I could do to change that, and I thought how lucky I was to handle a complete absence of love in life without ever thinking or feeling that love is to be hated, but I do know that finding a lady now is less likely now than being eaten by a shark in the main street of Canberra, the town where I live.

 

One guy I do know has gone from diagnosis, RP, IMRT, ADT and now chemo all within 2.5 years, and he's under 60, has wife and kids, and its a terrible hit for them all, but for a huge number of ppl, this is their life, and I for one have had to accept that my life will end, and those few friends I have will live on without much trouble like millions of others must every day. As a species we are adaptable.

I know others who have Pca, alive at 25 years after diagnosis. So treatment that works for some men does not work for others. 

I am writing a website on electronics, I watch the best TV shows on SBS, I am cycling quite well, and I have friends online all around the world, I cannot rely on Facebook, do not own an i-phone and am symptom free, resting HR 50, BMI 24, looking 55, doctors like me arriving to see them in lycra while everyone else around them is in far worse condition, physically, and mentally.

 

8 months ago my onco doc said "Patrick, this is a HORRIBLE scan". I didn't bother looking, I just read the report, which said basically, "riddled with cancer". OK, there's nothing anyone could do to stop my DNA doing its version of life. So the doc was more upset than I was. I have continued on, unable to avoid whatever happens when it does. 

Words are somewhat inadequate to describe the emotional depths we descend into when our cherished life is threatened.

Doctors seem able to only extend life, which gets more precious as time passes, and with little future I have confirmed in my mind that no amount of world cruises or new cars or houses would make my last days happier, I want no thing. I find I cannot believe in any spiritual afterlife. It seems natural for me to come to a complete stop, but while alive I am glad I made others happy with my hard work, and I don't much care that they didn't love me. IMHO, cancer is not a challenge sent by some God, but it is one sent by Nature who does not have human characteristics, Nature just is, and the ultimate meaning of Existence is that it has no meaning, it just is until it is not, and at that moment all your pain will cease. My mother at 55 lost her husband at 60, and I was 25; I cried for an hour at the hospital, then did the rest of my life OK after getting over it. My mother survived the loss of her husband, and lived the next 43 years without a man touching her, and  she had some sad times. But if I had a dollar for the number of gatherings of friendly ppl at lunches and dinners at her place I'd be quite wealthy. She outlived most of them. You'll live on in the minds of those who love you, if you love them, but I know all this seems easier said than done. 

Patrick Turner. 

 

 

 

[tonymax]

Tim,

See my history including last 3-4 years on Enza in the my story section of forums.

There are often huge differences person to person of course.

My most recent PSA (today) is 1.07

We are all trying to digest the potential complex approval conditions for Xofigo and work out how they can be widened.

My next options when Enza fails is to try Abiraterone (available in another part of the clinical trial I am on) then surgery or some type of radiation on my lymph node.

Hope this helps a bit and happy to talk further

 

Regards          Tony Maxwell

 

[Charles (Chuck) Maack]

Where to go following Zoladex/Casodex failure plus metastasized lesion on one rib

 

This explanation of Xofigo/Alpharadin/Radium 223 from the U.S. National Cancer Institute:

https://www.cancer.gov/types/prostate/research/radium-223-improves-survival 

 

It would appear, however, that since you are not experiencing pain from the rib lesion, the consensus of the medical community may be that stereotactic body radiotherapy (SBRT) targeted directly to that lesion would be the preferred – and much less costly – preference for treatment. 

 

I would hope, too, with metastasis being present, that you have been prescribed and are being intravenously administered either a bisphosphonate (Zometa/zoledronic acid) every 12 weeks or so, or the more recent preference, denosumab in the form of Xgeva as a subcutaneous injection every 28 days.

 

As to the next step with failing Zoladex and Casodex.  A possible consideration to discuss with your treating Medical Oncologist would be Zytiga/abiraterone to shut down the three sources of testosterone production (testicular, adrenal glands, and that testosterone that cancer cells can produce within themselves), and the antiandrogen nilutamide/Nilandron whose action on cancer cell androgen receptors is somewhat different than bicalutamide/Casodex and flutamide/Eulexin and appears more effective.  Explained further here with more explanations available on the internet:

http://www.medicalook.com/reviews/Nilutamide.html

 

[alanbarlee]

G'day Tim,

On Ra223 (Xofigo), the present PBS position is a PBAC recommendation to the Minister that it be approved for use IF the patient has had no prior cabazitaxel (Taxotere chemo), enzalutamide (Xtandi) or abiraterone (Zytiga). However, it is possible that these constraints may be grandfathered (waived) for patients who have had one or more of these treatments prior to either the date of the PBAC recommendation or the date that RA223 becomes eligible for PBS / Medicare subsidy.

You've had early chemo in conjunction with your ADT (Zoladex+Cosudex) which was appropriately aggressive for your high Gleason score and PSA, and indicates that your oncologist is on the ball and looking at recent clinical trial outcomes.  

The gallium 68-PSMA  / PET scan and PSA is the best way of tracking progressive disease - which you're doing. Like you, I think statistical averages are useless predictors for individuals - especially in the absence of 95% confidence limits, which medicos sadly seldom communicate to their patients. 

An increase of PSA from 0.8 to 8 and a single remaining lesion is worth following up - perhaps with SABR (stereotactic radiation), as you are contemplating. Although the spot-welding concept is persuasive, the evidence of efficacy for high Gleason patients (yours was 9) is still thin on the ground. You might therefore want to discuss parallel systemic treatment with your oncologist, since micrometastasis may not yet be visible on your scans.

Keep up your positive lifestyle, relationships and attitude - they all help a lot!

Cheers,

Alan      

[spook1958]

G'day Tim,

 

I am in a similar situation.  I was diagnosed almost 11 years ago at age 51, Gleason 9.  Had RP, Chemo, Radiation, Zolodex intermittent for 9 years.  I have responded well to all those treatments, changed diet, excercise etc to assist the treatments.

 

Now Zolodex is not holding back all the PC and PSA is climbing again.  I have no bone mets all mine are soft tissue but there is 6 or 7 of them.  I am being told Zytiga is probably next.  My specialist would like me to pay for Lutetium as he thinks it would assist me due to not being in the bones.  I am only half convinced.

 

I am told my next step is a PSMA scan (my 3rd) to locate the cancer within reach of a needle so they can biopsy it and identify the DNA and find a treatment best suited.  Apparently my original RP Biopsy was too early and they didn't DNA the cancer in those days.

 

I am active, I still want to continue traveling and am concerned that Zytiga with Steroid backup will interfere.  On Steroids for Chemo my face and body blew up.

 

So I am looking for advice on the next step as well.  If I have to pay for Lutetium, then less travel which I don't mind if it is successful with Soft Tissue, or maybe I can keep that one up my sleeve at the moment.  Very unsure.

 

Ian

[Patrick Turner]

After chemo failed, I bought 4 shots Lu177 from Theranostics Australia who have a clinic run by Genesis care at Waratah hospital at Hurstville NSW. I had to travel 300km 4 times from Canberra where I live, and Psa before was 25, and 13 moths later is about 0.32. Cost was about aud $40,000 for 4 infusions and 3 PsMa Ga68 PET/CT scans. the scans are essential because they show if you would benefit with Lu177. Not all men do get a benefit if they have a mix of Pca types where some has high PsMa expression and some does not. 

I'd be in palliative care now if I didn't have Lu177. Instead, I feel very well, I cycled 50km this am, good average speed at age 72. I've lasted more than 10 years after diagnosis that was about 4 years too late because my Pca generated low Psa of 6.0 when the PG had become inoperable, Gleason 9. I don't seem to have much mutant Pca so it seems from what docs have / have not told me. 

Patrick Turner. 

[alanbarlee]

Hi Ian,

 

I've had a partly similar history to you - but Gleason '7.5', (50% Gleason 4), nodes only by FDG PT/CT, and no chemo or radiation (yet).

 

I've had great success with Zytiga (2 x 500 mg) plus dexamethasone (0.5 mg) - which has been going now for 6 years (I'm now 78). This has been accompanied by continued Zoladex plus Avodart (0.5 mg on alternate days). My PSA dropped rapidly from its previously androgen-resistant level of 7, and has been below 0.1 (minimum 0.01) for the past 2 ½ years. 

 

Side effects of the combo have been minimal - mild neuropathy in the feet, and not much else. We still travel occasionally (Patagonia and Antarctica next week), backed up with walking and gym. Balance,  flexibility and leg strength have diminished (other than loss of muscle mass, most of these are probably age-related), but not much else has been going on. Happily, bone density, lipids, glucose,  BMI and cognition are all OK, even after 17 years of minimal testosterone.

 

Take from that what you will - but keep in mind that Zytiga is an established PBS treatment, whereas lutetium, although very promising for specific metastatic disease, is not yet through its Phase 3 trialing stage. (You maybe eligible for one of the lutetium combo trials, however, if you happen to not respond - or stop responding - to Zytiga).  

 

Best wishes,

 

Alan

[DesG]

Thanks for sharing Alan - you will love Antarctica - will you be crossing the Drake Passage? if so - hope it is reasonable

[spook1958]

G'day Patrick, I guess the DNA testing of the PC will tell if I am a candidate for Lutetium or not.  I may be lucky and they will do a study for guys in my position without Bone Mets.  I am glad it worked well for you, it gives us all a bit more hope.

 

Ian

[spook1958]

G'day Alan, I already have the Neuropathy in my feet after Chemo 10 years ago.  I normally walk 10ks a day and I attend a Zolodex funded gym session with other PC guys, each week.  I am getting balance and muscle back, which takes a weight off the mind.  Bone Density in September, was horrendous with high likelihood of fracture for my neck, spin and hips.  Nine years on Zolodex and nobody throught to check earlier.  Still, An infusion and then taking up the walking, has hopefully sorted that out.

 

Cognitive, not so good.  Had to give up work last year because I was unable to to cope with the tasks I had to do on a daily basis.  I only lasted as long as I did because I was the boss.  I should have stopped a year earlier.  But I am coping better now with the pressure off.  Still poor short term memory, but long term is okay.  Practically given up driving.

 

A friend of mine enjoyed the Patagonia across to Antarctica trip a couple of years ago, sounded like fun.  No issue taking your pills with you?  I hope to fit the West Coast of Canada, then Alaska and Yukon in this year, followed by the East coast ASAP after, maybe also this year.  My Wife is on a live injection weekly, for A.S. and because it has to stay refrigerated she shouldn't go without it for the 2 months it would take to do both sides of Canada in the one trip.

 

I appreciate you blokes responding.

 

Ian

 

 

[alanbarlee]

Hi again Ian,

 

On lutetium, you might check that an FDG PET/CT is done by the provider, alongside the 68Ga-PSMA11 PET/CT scan. As well as showing that your mets are PSMA-avid (needed for the Lu to work), an FDG scan should ideally match the PSMA scan. If there are mets that show up on FDG but not PSMA, then lutetium will only deal with  those that do show up on PSMA, but not the others.

 

When I last enquired (at the PCRI patient conference), Theranostics Australia weren't doing the FDG scan, which means that even with a positive PSMA scan you may not get the result you would be hoping for after having spent a lot of money. (On the other hand, lutetium trials will usually use both scans). If this is still the situation, an alternative systemic treatment, ideally guided by gene analysis, would be good to pursue: there are a number of possibilities there. (Zytiga still seems like a good option, and wouldn't need the gene analysis).

 

Cheers,

 

Alan 

[Patrick Turner]

Hi Alan,

FDG PET/CT scans were never mentioned when I dealt with Theranostics Australia. But then the FDG assessment is a *new thing* and as time goes by TA probably will want men who want Lu177 to get these FDG scans as well as PsMa scans to assess earlier instead of later whether or not additional treatment with DNA analysis and parp inhibitors - whatever- to try to stop Puff the Magic Prostate Grenade from fully exploding to kill a man too early.

I see my onco for another follow-up later this month so I shall ask him about FDG.

I am not in remission; it may be said my Pca is under control, but I have no idea for how long.  

Meanwhile, I have to say I feel real well, and cycled 54km this am across town for a cup of coffee.

Patrick Turner.