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pauldhodson

Lutetium177 Clinical Trial

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Chalkie

Thanks Chuck

 

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timbaker
17 hours ago, pauldhodson said:

Thanks Tim. I agree with everything you've said. I find meditation very useful, but working full time and exercising and having a young family, it;s hard to fit it all in right. I'd love to chat more about what you are doing, perhaps off the forum. Can I send you an email or text you? I'm not sure if this forum allows for private messages. Of all the guys I've come across, you're probably closest to me in terms of status of disease (i.e. rising PSA/castration resistance) age, family situation, working arrangements. We need to stick together! Cheers Paul.

Hey Paul, for sure. You can email me tim@bytimbaker.com - I actually feel strongly that there needs to be a new protocol developed for younger patients taking into account their circumstances. Everything modern medicine has to offer me is bad for my overall health and the message I've been given is that there's nothing meaningful I can do for my self so if you want to research diet, exercise, meditation, herbs and supplements the oncologists scoff dismissively and you are on your own trying to sort out whats credible and what's snake oil. I try and keep it simple - my mantra is N.E.A.R - which stands for nutrition, exercise, attitude, rest. I try and tick each of those boxes each day and that helps me feel like I'm on track. Who knows if it helps my prognosis but as we know from the placebo effect even the belief that it is helping is likely to be beneficial. Good luck and please do keep in touch. I've signed up for a University of Qld study here using high intensity training and what they call 'psycho-social' support which appears to consist of nothing more than a monthly newsletter so there's a long way to go to achieve some sort of holistic approach to this. cheers,

Tim 

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pauldhodson

For sure @timbaker. I will send you a test email shortly, to make first contact. Cheers Paul.

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Patrick Turner

About ketogenic diet.

I had a long series of emails with someone  months ago who begged me to try ketogenic, and he supplied a pile of bullshit arguments supporting the ketogenic diet which essentially is a  non-balanced starvation diet where you have no carbohydrate input to reduce blood glucose levels to "very low" and because of this constant reduced glucose level, the cancer is slowed, and may even die off. The proponent of ketogenic said Pca like many cancers needs lots of glucose to grow, but this is just no so; Pca grows just fine with very low blood glucose, because it is generally a very slow growing cancer. So a man will die trying to diet the cancer away. I begged the guy promoting ketogenic for incontrovertible proof that ketogenic works, but he could NOT give me any, and the only info was anecdotal remarks plus referral to Grandiose Bullshitters on a few fancy glossy websites with pictures of mistaken young men holding forth in the language of Jargonese.  

What I thought I needed to realise was to think every idea about curing PCa was bullshit, ie, fake information - until proven otherwise.

I read good things about enzalutamide, it is a possible next drug for me before chemo, systemic Lu117, and I still won't get a cure, just a bit more time.

Yesterday, I spent 3 hours mowing grass and tidying up to make the house look like Sum Bahstude lives here, and still another 2 hours to do tomorra. Today I cycled 64Km, in fabulous weather. But up one hill some guy about 45 overtook me so fast I could not ask him "what took ya so long ? "

It is amazin what a castrated old bloke riddled with cancer can do.

I've had a fairly good life, and I never think about God, mainly because, IMHO, God is not there to be thought about, and instead of having any thoughts about God, its much better to make others around you happy, which is difficult, because I've found a number of ppl who have gone so far to say they hate love. I am slowly accepting the idea of dying, and completely ceasing to exist, and meaning nothing more to any one than the full stop after what I type. 

Patrick Turner. 

 

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Chalkie

I am on your team Patrick - Getting the dreaded big C has changed my life.   And like you I am a non believer.  What it has done for me has make me go to the gym 3 times a week and as a result the only time that I was as fit as I am now was at the end of recruit training at Puckka in 1968.   I am enjoying life - Zolodex has removed one complication from my life but knocked 40 m off my drives on the golf course.  I was fatigued today playing golf in the heat of the mid afternoon sun - I said to myself while Xtandi can cause fatigue so does old age.  A few hot flushes on a hot afternoon is a bummer but when the slightest of breezes blows its cooling impact is somewhat invigorating and certainly welcomed.   In 2005 I was given 2-5 years so I am well and truly on profit.   When people as me how are you?  I say "Wonderful!"  and then I add, "Before I had my Prostate out I used to say 'Dangerous'!"   

 

The biggest bulldust story I heard was that the way to cure cancer is to mix bi-carbsoda with Canadian maplesyrup as cancer will source the sugar in the maple syrup and deliver acid to the cancer and bingo the cancer is knocked off!   

 

There is alway some encouraging news in the paper such as what was in the press yesterday are always encouraging:  

 A VACCINE could one day protect men from developing prostate cancer, thanks to a breakthrough by British scientists.

Experts have designed a vaccine that boosts the immune system’s ability to track down and kill the cancer cells as soon as they start to appear.

The research is at an early stage, but scientists from Queen’s University Belfast believe their findings could be used to vaccinate young men against prostate cancer.

It could also enable the body to kill off tumours in men who already have the cancer.  (Sun Herald Wed Mar 7)

 

 

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DavidW

I have posted my general story elsewhere here. 2017 was my Cabazitaxel year and 12 months on I have debilitating neuropathy in hands and feet. Typing this is a struggle.  I am reduced to a wheelchair for longer trips and wheel a cart around the house. Oncologists don't tell you it can happen and certainly no one has a cure answer. Some of you correspondents did considerable exercise post treatment which seems to have helped. I exercise by physio routine and struggled walking. But the chemo is fading in its effect. PSA from <1 now to 8. So I now have started Lutetium at my own cost. Two doses have reduced the PSA to 2 and two more to go at around 6 weeks gap. I had two (free) doses at St Vincents in Sydney 2016 as part of a trial but when I returned the trial had "stopped"  so two expected doses were not available. Hence the commencement on Cabazitaxel. We're all wise after the event and now I know the virulence of Cabazitaxel. I should have paid $20,000 for two more Lutetium. I have no side effect from Lutetium - maybe a little dry throat and I am not strong and lack endurance but I blame Cabazitaxel for that. My spirits are good and I have minimal pain except for neuropathy stabbing. It doesn't last.

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Chalkie

Scary - I am being considered for the TheraP trial starting in Nov.   My psa is on the rise 75 to 125 in the last month and I am hoping that I draw the long straw when the trial for me starts.    When I was on chemo last year steroids kept me going but there was a lot of peripheral neuropathy which is still lingering. But lifestyle was not too debilitating and I am told that most tolerate cabazataxel better that taxatere or detoxatel or what ever it is called.

 

Watch this space in November

 

 

 

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Patrick Turner

Hi David W.

I have to raise a salute to your courageous efforts to type your continuing story of your fight with Pca.

I am had 5th Docetaxel last Thursday, and before that was done I had meeting with onco who told me Psa had declined from 45 to 36 in just a week, which equals a 3 week halving rate, so my faith in chemo has not fully evaporated. Meanwhile, my referral to Dr Lenzo given in previous week went through and I have a Skype talk tomorrow, Sunday at 2pm here, 11am in Perth. I have filled in 14 pages of questioinaires about history and a consent form. Theranostics has become a part of genesiscare.com.au, I guess because its better for Dr Lenzo not to have to run an admin office, allowing him to spend more time doctoring with rising demands in Oz where public hospitals are still in trial modes. 

 

I don't know if you had Docetaxel, but I get neuropathy and legs feel a bit slowed, and its like skin of feet is glued to plastic sheeting, but I walk fine and cycle even better, and my hands also suffer but get better in last week of 3 for ech chemo cycle. I think having Lu177 soon is critical to me preventing damage to bone structures which begin in the inner parts of bone with blood supply. Once the lesion formed reached through the hard outer shell of each bone you can get lumps of cancer pressing on nerves and cartlidge tissue causing pain and damage to any joint, while making the bone less strong, so the sooner anyone hits the bone cancer mets the better, and its a tradgedy to let Psa go high and have Pca break through into the outer surfaces of bone.

Bones of the skull are prone to Pca mets, and a break through to brain through the thin bone means real trouble. So I'll go with Lenzo if he thinks it'll do me good, and because my bone mets are PsMa avid, I should be within 80% of men who get at least 50% reduction of Psa. 

The latest scans show Docetaxel has not been useless because there's no mentions in report of any visceral lymph node spread seen in earlier PsMa scans. I've had 4 so far.

All my organs are clear, but that just means whatever might be there is below detectable size. But PG which could not be removed with RP back in 2010 has moderate uptake of PsMa in its central portion where all the shit first happened, and of course the mets seen now could have mostly began when PG Gleason score moved from whatever it was, say when Gleason was 5 with pea size tumour and low Psa in 2005 to the monster inoperable gleason 9 in diagnosis 2009. Most of those mets were suppressed while ADT worked. But mets could have slowly dribbled out of PG after ADT began, and with whatever continuing mutations which now could be very numerous, and not eventually be able to be stopped by anything. So the Lu177 plus docetaxel will kill whatever they can while applied, and if there are mutation Pca cells near Pca cells that are PsMa avid, all these can be killed, maybe, and so I might get good result with lower Psa, but with underlying low levels of mutants than nothing could kill, unless perhaps Radium 223 is brought in to gate crash the cancer parties going on in my bones.

 

The radiation Registra doc has written to thr Thera-P trial P about Cabitaxel or Lu177. They are still accepting patients but are not filling numbers because there isn't any benefit seen by many thinking men who can't get what looks best, Lu177, and then lose lifetime when Cabitaxel does not work, leaving them having to fund Lu177 after Cabitaxel has left them with bigger bone mets. I could get Cabitaxel at Canberra Public Hospital if I wanted to, or could now have changed to it because Psa rise from 12 to 40 after 4 Doctet injects sum up to a failure, and its just luck the Psa then went to 45 and then is now going down, but nobody knows exactly why, but I think its because visceral soft tissue mets have reduced Psa output, and the bone mets have maybe slowly risen. They must have, looking at the CT scans I have had, but bone met size and Psa levels become a bit non linear toeach other so Psa is less important. Bone mets can reduce in size, and a CT scan still shows them without size loss because radioactive scan isotope goes where calcium activity is happening and there is some where bones have had Pca. Bones where lesions occur fill with soft chalk like muck, or hard junk and both make bones more brittle and less able to take compressive force, or tension force where bones bend, and ribs are very susceptible.

 

Maybe if your mets are avid for PsMa then more Lu177 may not do much harm although expect a drier mouth. I know a guy who has had a dry mouth for 10 years after IMRT to his throat area where he had a cancer hit him before he had Pca. He chews a special chewing gum and he copes, and is glad to be alive. His treating doc died of a similar neck cancer. 

I think Barry E has had 6 x Lu177, ask him how he fares with a dry mouth. 

 

Anyway, in my 4th Docet cycle I cycled each day except for 2 half way due to rain. My radiation doc said he's never seen anyone ride a bike right through the cycle. But it reduced all the side effects and nervous effects of restless legs and aches in muscles are less and I am doing stretch exercizes of leg muscles - big difference.

Now I am expected to take 4 Dexamethazone tablets during day before Docet, on day of Docet, and day after Docet, and that occurs when I have recovered from previous 3 week chemo cycle, and I found it easy to do the to-from trip to hospital on bike of 38km, and on way home I ovwer took 11 ppl riding home from their dreary office jobs, some only 30. Well usually day 2 after chemo the body and mind gets the whamo from chemo, and youse jus don't feel like yourself. But today I tried one Dexa pill at breakfast, and felt so good, and rode 18km like yesterday without ills of bad legs dragging. 

Maybe a little Extra Dexa won't hurt, and allow me to pump the chemo round and round faster and faster while I ride, and getting it to mets again and again, amplifying the effects of chemo at mets.

The same would happen with Lu177, round and round we go, and more Lu177 locates at mets than if I sit in a chair feeling morose. I am not a good walker, I have a bung ankle I broke at age 19, a bit lumpy, and I need to see a podiatrist about shoe mods, but manage without it. But I walk enough, and at hospital if I visit in car, I park far away in long stay zones and get a 2km walk rather than a short useless walk. So far, weight has not changed, resting HR is low, waist is < 100cm, BMI <25, and I am doing quite well to be able to continue most QOL stuff.

 

Barry E said he saw a fella get 40 chemo injects. Wow, that is  120 weeks or 2.3 years. He didn't tell me if the dose was same but some cancer cases can lead to repeated doses at lower "maintenance levels" so cancer remains, but does not increase, ie, is under control. There is more QOL time with less side effect damage.

but that's uncommon because cancer usually is not entirely indolent and either its all killed as I have seen or there's always some left after any treatment and that's what grows back again, maybe harder to treat especially if a man has got old and weaker from ageing, and unable to take side effects. 

 

Tomorrow wis a mystery day with unknown outcome when I talk to Dr Lenzo. I hope he can help me, and I'll just have to wait and see.

My doc said Ra223, aka Zofigo, made at Lucas Heigts reactor, was available here, but I googled it and found nothing, but I may need it for bones. Maybe better than Lu177 which can work on bones if possible to, depending on PsMa avidity and mutations. Bone cancer is like a rats eating the walls of your house, hard to kill with a club, but in the rooms of your visceral soft tissue you can swing a club easier. 

I hope you get some good future treatment results, don't give up HOPE until you are really forced to.

All the best mate, Patrick Turner. 

 

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Chalkie

Scary - I am being considered for the TheraP trial starting in Nov.   My psa is on the rise 75 to 125 in the last month and I am hoping that I draw the long straw when the trial for me starts.    When I was on chemo last year steroids kept me going but there was a lot of peripheral neuropathy which is still lingering. But lifestyle was not too debilitating and I am told that most tolerate cabazataxel better that taxatere or detoxatel or what ever it is called.

 

Watch this space in November

 

 

 

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Chalkie

I had 7 Docetaxel infusions from Feb to Aug last year - It brought my psa down from the 80s and stabilized at about 20.  I could have gone on but was keen to get on to the Xtandi - which I am still using but it is running its race.   

My fingernails became infected one by one - perhaps I should have scrubbed them every night and bathed them in salty water early on.  I gargled every night to keep my throat from getting infected and that worked.

I admire your effort in riding your pushie to the hospital for your infusions 18kms that's a long way.  I ride the bike at the gym for huff and puff and it certainly helps my cardio-etc and I continued through doing this when I was on the Chemo - it was harder but I pushed myself to do it as I hoped it would help with the effectiveness of the chemo.  I now wonder whether I should have continued for longer and I am not sure if I can have it again if all else fails. 

I am off O/S for two weeks and hope that I have no real issues as no travel insurance was available for my medical situation and the Drs at PMCC say go for it.     They gave me 5 years at best 14 years ago so I consider that I am on profit - and am making the most of it.  

So far my brain seems to be in tact and I am enjoying life - with lots of things happening around me.   I guess you oar on the Denosumab to protect your bones 

My onco told me that the Radium 223 was only made in a nuclear power station in Norway! but that was a few years ago when a trial was about to happen but one of the vials was found to have a  hair in it and the batch had to be destroyed Hearsay perhaps

 

Anyway we are in a lucky country where many meds are free and available and lots of stuff happening in the future.

Cheers

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Patrick Turner
9 hours ago, Chalkie said:

Anyway we are in a lucky country

Well I hope we do. Not all is free, but for me that's OK. I have not followed through about asking exactly where Ra223 is made, but Bayer sell it, not sure from where.

My finger / toe nails are fine so far, but could decide to leave me any time. Got to cycle a bit now, have lunch, then talk to Dr Lenzo at 2pm here, 11am in Perth, via Skype. 

Doc said I had 8 years at start of chemo, I said maybe 4, and when Psa went up so badly I thought maybe 2years or less. Once you get to bad bone pain, you are basically stuffed, life over, can't do much, and it only takes one or two bad bone lesions to cause enough pain. Bones are the castles of our bodies and if they are rotted out from within you have huge bothers. At another group HealthUnlocked, there are daughters posting about how their dad is getting along, and he isn't well enough to type anything. 

Keep well as you can mate, Patrick Turner. 

 

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