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Kezza2

Is this the end ??

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Kezza2

Well gentlemen,

This could be it.  After 9 ndoses of docetaxel only brought my PSA down to 16, two weeks later it was back to 22, and after four weeks it was 36.  I then began to get bouts of dissyness followed by nausea, so med onc sent me for an MRI.  I must add a huge complement to QScan, firstly for getting me an appointment when waiting lists are up to six weeks, and secondly for the treatment of the radiographers and doctor at Carindale.

The result is I have a number of Mets in my brain, including one at 44 mm across.  This is on top of the other bone mets scattered about my body. 

 

Unfortunate timing as I had just been signed up for the TheraP trial, but have had to withdraw from that so no Lutetium for me for now.

Off to see the Rad Onc tomorrow to see what can be done about the brain mets, and will keep doing updates while able for those who are interested.  Just having a bit of trouble typing at present - one of the symptoms, along with numbness on left side of my face.  Hopefully Dex will reduce the symptoms over time.

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Kevin Martin

Hang in there Kezza2, I hope that after the required treatment that the god's are on your side and you come out of it OK.

All the best for which must be a traumatic time for you and your family.

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Patrick Turner

Hi Kezza2,

I'm sorry to read the bad news, I guess your doctor is doing what he can for you.

I'd say you need to take it easy, and no matter what happens I hope the doctors at least keep you pain free.

I had 4 chemos. Psa went from 12 to 50, then arranged Lu177. While waiting the month I had a 5th chemo that confirmed it was not doing enough. But then Psa went down to 25 before any Lu177, and after 3 shots it was 5. Then docs started me on enzalutamide because it is thought that makes Pca express more PsMa so more Lu177 is attracted to Pca sites, mainly only in bones now. I have no idea if that will make the 4th Lu177 work better, in 10 day's time. I have no idea how long Lu177 will work well for me but so far is seems I am getting a response that chemo could not achieve.  

I hope you have ppl close to you for support.

Patrick Turner. 

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Colin Glover

Kerry I'm sorry there have been so many twists and turns for little reward. Thanks for talking this morning I hope your radiation gives some hope.

 

Cheers

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deanbatt

So sorry for your condition.  I am going through treatment now. Mine seems like nothing compared to yours 

God bless you, stay strong. 

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Nev Black

Hi Kerry

I was shocked to read of your plight this morning. 

This insidious cancer can strike hard at any time, it seems, on any of us guys with Advanced Prostate Cancer. 

Your strength at this difficult time, in even making a posting, is inspirational.  

Please keep us posted if you are able to.

We are definitely thinking of you and your family through this.

Good luck and best wishes 

Nev

 

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Kezza2
3 hours ago, Patrick Turner said:

Hi Kezza2,

I'm sorry to read the bad news, I guess your doctor is doing what he can for you.

I'd say you need to take it easy, and no matter what happens I hope the doctors at least keep you pain free.

I had 4 chemos. Psa went from 12 to 50, then arranged Lu177. While waiting the month I had a 5th chemo that confirmed it was not doing enough. But then Psa went down to 25 before any Lu177, and after 3 shots it was 5. Then docs started me on enzalutamide because it is thought that makes Pca express more PsMa so more Lu177 is attracted to Pca sites, mainly only in bones now. I have no idea if that will make the 4th Lu177 work better, in 10 day's time. I have no idea how long Lu177 will work well for me but so far is seems I am getting a response that chemo could not achieve.  

I hope you have ppl close to you for support.

Patrick Turner. 

Thanks for the reply Patrick,  was wondering how the Lu 177 was going.  If we can get this brain thing sorted, I stiil have to attend to the other bone mets, so to hear your results are promising gives me hope

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alanbarlee

A gutsy post, Kezza.

One thought which might be worth following up with a good radonc - what about hitting the brain met(s) with stereotactic radiation (e.g. Cyberknife or Linac)? This high dose 'spot welding' is a commonly used treatment for brain mets, although the number of mets maybe limited to 5. At least the large one might be worth nailing. In some circumstances radiation can also help chemo to do its job better (the 'abscopal effect').

On the basis of an unhappy family experience, you might want to carefully check out the option (if it's offered to you) of whole brain radiation before you sign up for it. This has a significant cognitive downside, which is claimed to take 12 months to appear, but which in fact can (and does) kick in much sooner, and causing quite major deficits.

Another long shot might be darolutamide, a new and effective prostate cancer drug which penetrates the blood-brain barrier, and which might help. You might be eligible for a clinical trial, or your medonc might be able to negotiate special access from the manufacturer. (I'm not sure whether darolutamide has got past the TGA yet).

There are also new immunotherapy possibilities like a pembrolizumab / ipilimumab cocktail, that seem to work best when there's a heavy mutation load  - although the side effects of this treatment may not be trivial. If you do go down that track, you would need to keep a close watch on your bloods - especially platelets. 

All of these are simply possibilities that might be worth raising with your medical team. As you know, I'm not qualified to recommend any of them.  

 

On the strictly pragmatic side, if you haven't done it yet (and everyone of driving age should have done so), now might be a good time to set up your advance care plan and medical power of attorney. You might also want to explore your options for palliative care - which as you know isn't a death sentence, but which does give you access to specialist care in helping you and your family to manage the side effects of your condition and treatment into the indefinite future. These simple acts will relieve you of a lot of anxiety and guilt, and let you get on with your life - especially your bucket list and your relationships.

Kezza - I hope these comments are at least vaguely relevant and helpful as you deal with your evolving reality.

Cheers,

Alan    

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Patrick Turner

Great advice Alan. There's stereotactic RT at Epworth in Melbourne who might do "pencil beam" IMRT.

But our brain is Our Real Self, and to radiate any part of it could cause profound changes. I just hope Kezza can access ppl who will make his difficult situation less painful or stressful. 

I wish him all the best,

Patrick Turner.

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Kezza2

Thanks Alan (and Patrick) for the great advice.  That is the imense value of these forums.  I believe the PA hospital Brisbane) has cyberknife and the latest in stereotactic equipment, and the SMO radonc Margo Lehmann is highly regarded in both the public and private sectors, so I am in good hands.  My other two medoncs are hovering around like mother hens, so if it is fixable they will fix it.  and if not I have had a great life with very few regrets.

I will continue to post updates while I am able, and keep fiting the good fight

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DavidAbrahams

Kezza, Shocked and saddened to read your latest post this evening. There is not much else I can say without repeating what has already been said. You are undoubtedly an inspiration to all members of this very exclusive "MEN ONLY CLUB". Keep up the good fight and endeavor to continue to enjoy the things in life that brings a smile or laugh. Have you heard of PAL Assist sponsored/ supported by CCQ & PCFA. It is a Palliative Care help program  for individuals and family members. 1800 772 273 . 7am - 7pm You can off course  give me a bell if you want a chat.                                                                                                                                                                                          Good luck and All the Very Best to you and yours.                                                                                                          David 

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alanbarlee

Correction: Please ignore my reference to darolutamide in my earlier post. This novel anti-androgen is claimed to NOT penetrate the blood/brain barrier (making it LESS likely to cause some of the CNS side effects that  can be encountered with enzalutamide).

Sorry,

Alan

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Patrick Turner
On 4/16/2019 at 8:15 PM, Kezza2 said:

I believe the PA hospital Brisbane) has cyberknife and the latest in stereotactic equipment,

I was at follow-up meeting with my local radiation doc and he is leaving Canberra Public to work at Albert in Vic, and so it was shake hand event as I have known him since 2010. Anyway, I mentioned I kept in involved with this group and the HealthUnlocked group to share experiences with many other men and I mentioned to this doc here that one man in a group had a brain met nearly as big as a golf ball, 44mm, and this doc suggested stereotactic RT. But 44mm is a frightening size, are you sure that was the size and not 4.4mm ?

I would imagine having enough IMRT to a 44mm sized tumour will affect your personality and general level of coping physically. In other words, there would be side effects that may be permanent. I've had 70Grey to PG for initial treatment then another added 31Grey 6 years later which had only mild effect if any, because I was put on Cosadex at beginning of the IMRT and Psa went from 5.6 to nadir of 0.4 then up again in 6 months, so I can't say the IMRT worked because  if it did, maybe its effect was masked by Cosadex. 

The 2nd PsMa scan I had in 2017 showed plenty Pca in PG, but that's reduced with Lu177. 

I do not know if Lu177 is able to go to brain or not. 

Doctors are eager to keep you alive, but always expect that there may be complications so you'd ideally want to have someone caring about you at this time. We like to be independent for as long as possible, but none of us can be that forever. I don't have any partner or kids, and have gotten used to just sucking up all the bothers in life when they happened without any support from anyone, so when I am forced to admit defeat and surrender, I'll just hold one hand with the other, and hope the public care system gives me enough pain relief. I don't fear being alone, because I've been alone most of my life, and am used to it. I know I am not going to have a huge long future where I don't have to worry about anything like we did at 30, or even 50.  

Its beautiful day here, 26C predicted, and I'll get out for a short cycle ride, and have a swim later, lunch at a café,  then tinker in shed, and I don't need companions for any of this, I'll be quite serene and peaceful. Companions would be nice, but the ones of the past left town after some years wheras I stayed put, quite happy to not have to travel anywhere; I seem to cope OK. But we are all different, and some of us feel dreadful during the challenge Pca brings. I've shared house with a number of ppl and none were worry-free, and not all coped well, even without any cancer, but at least a daily or weekly chat was good between the 2 of us, but the reality is that we must cope alone, and afaiac, just accept help when its offered with as positive attitude as possible, so the helpers feel better.

I'm darned if I can let myself be a grumpy old man. 

Patrick Turner. 

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Kezza2

Thanks Patrick for the post.  The latest prognosis is that the tumors (5 total) are only in the dura, the lining of the brain just under the skull.  the big one is 44 mmm across but only fairly thin, but the growth is pushing on the brain causing the swelling that gives me the symptoms, eg difficulty typing, talking sometimes, etc, and numbness on the left side of my face.

I start radiation on 7th May - 10 doses, and my med onc is chasing up the availability of some new immunotherapy drugs that do cross the brain-blood barrier (thanks Alan).

After treatment, they still want me to continue with the Thera-P trial, so I might get the Lu177 yet.

It hasn't got me yet - keep on fighting  ☺️

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alanbarlee

Seems like you're in really good hands, Kezza. 'Shallow' radiation and immunotherapy both sound like really good options.

 

There's such rapid progress happening with breakthrough treatment. Docetaxel - the first effective chemotherapy for prostate cancer - only hit the scene in 2004, and now look at all the new drugs, radiation techniques, imaging methods and genetic tests that our docs have available to them to precisely hit the various subsets of our disease. If you had to cop PCa, you certainly chose a good decade. With a bit of luck you'll buy the time you need to at least push the disease down into remission.

The doughnut may not come with icing, but it's much more sustaining than the hole! 

Best wishes,

Alan      

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Kezza2

Thanks for that Alan, I love a bit of humour.  What do you know about "small cell"  ??  My rad onc suspects it may have mutated to small cell, given its unusual position in the dura, the first membane between the skull and brain.  If she is right that might open up a new drug approach, as you mentioned previously.

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alanbarlee

Kezza - there's been some good and recent discussion on small cell / neuroendocrine cancers on the Forum. Check out the 'Paul Hodson' (WA member) 2/11/18 post.

Aggressive treatment of NETs is usually recommended, possibly including a cocktail of immunotherapy drugs and maybe platin-based chemotherapy. 177Lutetium-PSMA617 may also be relevant, but NETs may not be PSMA-avid - another question to ask your radonc.

You might also ask what are the biopsy possibilities, and whether circulating tumour cell testing would add anything, to get a good handle on the NET theory.

Stay in touch.

Alan   

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Nev Black

Good afternoon Kerry

Around this time last year David Abrahams and myself were in Melbourne at the PCFA's Community Conversations at the Peter Mac Hospital.

We were fortunate enough to get a partial tour of their research centre where they were actually starting research on small cell carcinoma.

I am sorry I cannot shed any light on the progress of the research over the last 12 months and unfortunately progress can be very slow. 

I don't believe they would have reached a clinical trial stage to date, but it may be worth checking.

Great to hear you are going forward with a positive attitude. 

Nev 

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Patrick Turner
On 4/19/2019 at 6:58 PM, Kezza2 said:

The latest prognosis is that the tumors (5 total) are only in the dura, the lining of the brain just under the skull.  the big one is 44 mmm across but only fairly thin,

Well, that's a different thing to having big spheres in brain up to 44mm dia. My bone mets are so far spherical, and up to about 10mm dia, and apparently not a threat to bone strength. 

Just where your mets are depends how easy it would be to give them IMRT and then you need the mets to respond to the IMRT by dying promptly, leaving your healthy tissues more or less un-harmed but of just what might happen is not at all within my knowledge but what happens if dura ends up with holes in it after treatment ?

By all means chase the other treatments that may be possible. There are some who say there's no such thing as fighting cancer, but you and I both have to consult doctors, get scans and pay, pay, pay, and we all would just prefer to un-age, and enjoy out last years.

So, it may not be the end. When I was diagnosed in 2009, Gleason 9 with 9 positive biopsy samples, I always thought I might un-live within two years, or maybe 20 years, nobody knew how I would react to treatments. 

Then the doc opened me up, took a look around, took more biopsy samples, but could not remove PG.

So then I thought I probably was doomed. 

Last week, Psa was 4.5, trend is for Psa to nose dive now, but I for one know how fast it can spring back up.

Lu177 is maybe next Thursday, but on Friday I got email from Genesis Care who administer Dr Lenzo's team and they wanted me to contact them asap, but it was too late and I can't talk to them until Tuesday and maybe they change the date, if they could not get the Lu177 prepared at Lucas Heights reactor because Easter break interfered, but maybe some other bother has cropped up. A week's delay would be fine, and not make the outcome any worse. 

Always look on the bright side.

Someone said they love Easter Bunnies, and dared to mention the Playboy variety, but from what little I do know these creatures are not always angelic, and they can be far more expensive than any cancer treatment. I am quite happy with a Lindt 70% cocoa dark chocolate, and all this Easter - Christmas -Valentine-Mothers-Day emphasis on buying stuff as presents which ppl have not asked you to buy is all something I have no need to care about. 

But have a nice day tomorrow, and years' full of nice days after.

Patrick Turner.

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Kerrie McMahon

Hi Kezza this is another Kezza lol. I had to write and give you some hope to keep on fighting. Its definately not over. I am sorry I cant give you all the specific details of the size of Dads tumours (mets)and all the medical terminology that others can but my 87 year old Dad has been fighting this monster for almost four years now and is still doing ok. Dad had a very small seizure and tests were ordered. Brain mets three small in back of brain near top of neck and one large tumour right side of brain. Dad had the large one removed (craniotomy) and the three small ones were radiated. (This is the way we found out he had PC. Big shock had no idea.) Must have been steriotactic because he had a mask made and it was a large dose to the mets or could have been two doses. He then had doxitaxel for I think it was 6 or 8 sessions. Then Zoledex injections every three months. He was given a few other meds...Casodex and others but PSA started doubling. Originally PSA was 20. Chemo got it down to almost undetectable. All along his journey he kept having MRI's so far the Brain Mets havent returned. As per his CT scans he doesnt have any bone mets that can be detected but unfortunately he has a 2.5cm tumour on his adrenal gland. Dad is now taking Zytiga and prednisone and he has been the best he has been for along time. His only symptoms are the fatigue and hotflashes. His PSA spiked while taking Zytiga to 5.5 after two months is now .65. The MO is hoping that his adrenal tumour will shrink but can't operate or radiat as it is too dangerous at his age. We are presently waiting on the BRACA Bravo test results to see if he is positive. He still mows his lawns and does the family shopping every Friday. We live in Melbourne. Trying to look after Dad the best way I can and these support groups are a blessing as so much knowledge can be shared.  I wish you all the best for your treatment. Kind regards Kerrie 

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Patrick Turner
33 minutes ago, Kerrie McMahon said:

my 87 year old Dad has been fighting this monster for almost four years now and is still doing ok.

What a story. The amazing thing seems to be that most doctors like to see how long they can maintain quality of life, although they do needed to be prodded along with that idea. I recall a GP said to me in 2008, "you're too healthy to have any cancer" and I could not help thinking he was No 1 type of Richard Cranium. I felt I had Pca, and Psa was 4+, and next year an Gleason 9 was found after 9 live biopsy samples. They tried an open RP in 2010 when Psa was 8, but found Pca had surrounded the outside of capsule so they could not see what they were doing to remove PG, so they left it there. But there was no local spread, and if there was any spread, it was so small that nothing appeared in scans. But in those days, MRI were not very good and there was no PsMa scan available. When that scan arrived in Melbourne in 2015, it could see small mets 2 years before any CT scan could, so this shocked many men who thought they had no mets. Anyway, I had first tiny mets show up in 2016.

Many more followed years later, and they'd all probably started years before I got diagnosed. 

The attitude was more lackadaisical in 2008 than it seems to be now. After all my treatments I had complete extermination of all sexual ability and sensation, and was addressed with the comment "You're not going to start a family are ya ?" and at 62, no, I sure was not, but I have known a few guys whose wives fled as soon as a guy got diagnosed with PG, or soon after. Complex business, personal life, can't really rely on anyone else I found.

Just good luck if ppl stay together. 

But during my time getting the 5 weeks of EBRT in late 2010 to PG there were up to 20 patients waiting and I'd be all cheery with a "hi everyone", and for first 2 weeks I turned up in lycra after cycling 20km to hospital across town. People were sullen, barely able to speak to anyone or me, some were seriously depressed and withdrawn. But one guy did, and he'd worked at a palliative care place, so he an I chatted quite well. I would dare to suggest that our group here is the tip of the iceberg who are able to talk about their ills, and what to do about it, but maybe most are unable to talk to anyone, its the old grin and bear it attitude. Even the doctors could get all dulled down by dealing with sad ppl who seemed stuck with their negativity, and I always tried to think of a way to have them smile, especially if they'd done something that lowered my Psa. My oncologist was a particularly dour bloke, and one day I offered to cycle a few km for him, because he had no time or desire to cycle, or stay fit, and I said, "Now  Doctor, this therapy I am offering does have a side effect, and you may feel you're heart going a little faster, and with a feeling of wellness, and that occurs when I am cycling up a hill, going hard, just for you, and for free"

 

After seeing me regularly for the last 8.5 years, he's generally been happier. Let's face it, it could never be a great job being a busy oncologist in a public hospital with so little time for patients who are so often just doomed.

But the man is bright enough and stoic like me, and really, I can't complain about any of the docs or the prostate cancer nurse who came to have a permanent position during the years I've been treated. She's even got used to me not having a mobile phone, and using emails, and enjoys my updates with results of getting Lu177. There are not many getting this treatment yet because you have to pay for it all from your own pocket, there is no Medicare rebate, and none for the many PsMa scans I've had. I have never paid insurance because I was too healthy for most of my life and the insurers exclude so much that it seems I'm just as well off to get what I can in the public system and pay directly from my own resources for what the public hospital does not have. A man may often have to pay to stay alive, Lu177 is about $40,000, for 4 injections, and a few talks to docs. But at least I am getting a good result now, Psa is 4.5, I feel better, and despite a slightly painy right hip these last 3 months, I was able to cycle 22km on last two days and so things are on the mend. I have no idea for how long. It is likely some Pca cells in the countless mets I have might be resistant to Lu177, but there is now time to get DNA tested and further action taken to extend my life and there are some eager-beaver docs out there doing such interesting work to deal with patients like me with latest theoretical treatments. I'll buy it. I don't wanna die just yet.

I have a nice un-complicated frugal life full of enjoyable simplicities, it'll do, and for as long I can arrange.

So, always look on the bright side,

Patrick Turner. 

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Kerrie McMahon

Patrick I feel so humbled by your reply. Thank you. You certainly have an amazingly positive attitude. I am aware of Lu 177 and the cost in Australia.  If Dad becomes resistant to Zytiga and his PSA rises Chemo is the next course of action. Think he may be too fragile for this though. Just hoping that Lu 177 may be available on PBS when this happens. Dreaming I guess but still hopeful. Also his BRACA 1& 2 Genetic testing might come back positive... if so he will qualify for a PARP inhibitor trial here in Melbourne. But at Dads age we have to accept that it's  also about his QOL. I am incredibly grateful that we still have him with us as many men suffering with this disease including yourself have been fighting for many years more and much younger..although we do not know just how long the cancer was festering inside before diagnosis. Dad has a family history of PC with his father and brother being taken and his sister has breast cancer. I am so happy for you that you are getting such great results with Lu 177 and all the best for continuing success. Keep on cycling and we will take your advice and look on the bright side of life. Best wishes   Kerrie.

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Patrick Turner

Hi Kerry, 

21 hours ago, Kerrie McMahon said:

I am aware of Lu 177 and the cost in Australia.  If Dad becomes resistant to Zytiga and his PSA rises Chemo is the next course of action.

I had 6 years of ADT suppression with Eligard, then Lucrin, and am continuing monthly Lucrin. But after 2016, I needed the "blocker drugs" in addition to ADT, because I wanted Psa kept low as possible. Cosadex was added and it lasted 6 months, Zytiga lasted 8 months, then tried Chemo with Docetaxel which made Psa rise from 12 to 36 in a few weeks, then Psa went flat at about 25, then after 4 infusions it went to 50, and more bone mets were seen in scans and I was losing the battle, and my onco said he doubted chemo would ever work, although he'd had slightly better results with Cabazataxel. Next step might have been Carboplatin and there's another chemo that is even more difficult to take. Basically there are 4 chemo drug steps with side effects getting worse for each, and often all these drugs don't do very much for Pca bone mets. 

So after No 4, I asked my onco to refer me to Dr Lenzo and Theranostics Australia, now administered by Genesis Care, so you can buy the treatment and have it administered in Sydney, or Perth, and I am not sure if there is anywhere else, but I heard another supplier of NRT , ( nuclide radiation therapy ) in in Brisbane. 

Don't hold your breath for Lu177 to be funded by Govt. Labour has promised much extra cancer funding, but Libs might win and they want to slowly let Medicare die from a thousand small cuts to make us like the US. 

I could be wrong about this, but to find $40,000 when you have not got it means any property might have to be reverse mortgaged, not a cheap way to fund medical expenses but If a house is worth say only $500,000, then to spend $100,000 on treatments still leaves $400,000 equity, so you have to figure out what might be done. 

I'm paying from my savings, and I can't take it with me when I un-exist, so the costs are not a problem. 

 

I had the chemo when I was still quite fit at 71, but the immediate side effects were bad for 8days after having an infusion, but then I got better and for the 4 last 3 week cycles of chemo I was able to ride a bicycle every day with increasing distance from 5km per day for 8 days, then up to 100km + per week for last week before next infusion, and I cycled 20km to the hospital to get my shot, then cycled home 20km, and felt just fine. Then overnite the dulled down days began. Long term bother was neuropathy in legs, where although I could cycle, I lost some feeling yet found that putting the bins out in bare feet on gravel drive was a PIA. I just coped. I needed Neulasta shots day after chemo to stop white blood cells going so low that an infection could easily kill me. 

The long term side effects of the chemo are now gone, and the side effects of Lu177 are extremely mild compared to Docetaxel. 

Dr Lenzo told me that one man drove up from ACT to Sydney, had the infusion, then drove back, at age 90.

But just how robust ppl are when they go over 60 is very variable and what one man can tolerate might cause severe problems with another. I might get DNA tested for Brca1,2 and PARP et all, but I've seen men have not the slightest response to that  kind of treatment. Your docs should get your dad to have PsMa scan and if that shows many spots then the Lu177 will probably work but not if his cancer spots do not show in this scan. The PsMa scan isn't in PBS either, so $700 for one, but no side effects. You need to be decisive, I'm lucky to know what I want when I see a doctor, and usually they agree with me, because I've read so much about Pca and read so many stories in chat groups. 

All the best with whatever you decide. 

Patrick Turner. 

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Kezza2

Just a quick update from my hospital bed at P A hospital.  Last wednesday I was at PA  for a review of the effectiveness of the radiation I  had to my brain lining and had a "turn" in front of the med onc where my legs wouldn't work and my speach became slurred.  She immediately had me admitted and organised an MRI.  Results show the radiation on the original mets was somewhat effective, I now have a whole new batch of mets.  Seeing the rad onc in the morning to plan the next step.  I saw the post for the new trial for Lu, and will be discussing with my med onc tomorrow.

Does anybody have any indication on whether Lu177 penetrates the brain - blood barrier ???.   I am not sure whether to pursue access to Lu or persist with cabazitaxel and radiation

Any thoughts ???

 

 

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Colin Glover

So sorry to see that Kerry. I haven't anything to add as I'm not on any treatment. I will be starting further radiation on my pelvis in a week or so. Its like chasing a dog with a bone, just go round and round in circles. It sounds like its in the cerebellum. Thats where my wife's tumour was. I hope the news gets better.

Cheers Col

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