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pauldhodson

Lutetium177 Clinical Trial

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pauldhodson

Hi Guys,

 

As many of you may be aware, there is a clinical trial underway for Lutetium177/Lu177 (see; https://www.anzup.org.au/content.aspx?page=lutetiumprostatecancertrial). I saw my medical oncologist recently and asked about it as my hospital (Sir Charles Gairdner in Perth) is listed as participating in the trial. The MO dismissed my query very abruptly saying it would be unethical for me to be put forward as I've recently started taking Xtandi and it appears to be working (my PSA has dropped from 3.6 to 2.3 over 6 weeks). While I'm, happy the Xtandi is doing it's job I am concerned that I will only get the average benefit (8 months) and then on to Zytiga (also 8 months on average). I haven't yet turned 51 and I have multiple bone mets (4 in my spine causing issues) and I would rather give something experimental a go, than go for the standard of care which is unlikely to see me reach my 53rd birthday.

 

Does anyone know more about the trial and other avenues to tap into it and why the heck it could be considered unethical to reach for something that's been described as a 'potential game changer'?

 

My MO is very conservative and seems uninterested in anything that isn't supported by a phase III clinical trial.

 

Thanks for your input.

 

Paul (in Perth).

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whatmeworry1941

I can't remember the protocols but you might not be eligible for the trial.

 

I believe Lutetium177 is available privately in Perth. IIRC about 10k per cycle and you might require 4-6 cycles.

 

I talked to my father's oncologist about Lu177 trial results and he said their had been problems with toxicity and some patients didn't have as great results as some.

 

Have you asked your oncologist about Radium 223 and whether you will eligible for that in the meanwhile?

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pauldhodson

Thanks @whatmeworry1941, I haven't asked about Ra223 as yet. I read here somewhere that you either get access to Ra223 or Xtandi but not both on the PBS and I've recently started Xtandi.

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stevecavill

Hi Paul,

I think the key word is "potential".  It might be a game changer, it might not.  I'm a bit on the side of  your MO - it might not help you at all.    But be aware that as a randomized trial you might not even get Lutetium, you might get Cabazitaxel.

Under a clinical trial, you get very intensive care.  Outside a trial the level of supervision is a lot less.  Personally I wouldn't try Lutetium outside a trial.  Can you get a referral from your GP to the trial?


I assume you have already had docetaxel.  Have you also had Stereotactic radiation to the spine mets?  Docetaxel and SBRT have worked well for me so far.  But then again Zoladex still works for me too, as I'm not castrate resistant (yet).

 

All the best, Steve (diagnosed with metastatic at 50, now 55)

 

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Bruce

I don't know any more than you about the trials, but I have just started Lutetium177  treatment after conventional radiotherapy failed to stop cancer spreading in my lymph system. My treatment is being managed by Dr Nat Lenzo at Antony Street Specialist Centre, Palmyra, WA. Perhaps it might be worthwhile you giving him a call.

Bruce (NSW) 

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Brian Lawrenson

I have been a patient of Dr Nat Lenzo who has a clinic in Perth. I had been on Xtandi for 8 months or so but my PSA started rising. A PET Scan showed that the cancer had spread through my body. I had two Lu177 treatments in Sydney and the PET Scan after 6 months showed that the protate cancer had disaappeared apart from a small area in one rib. Dr Lenzo was very pleased with the result. So was I. I feel that now at 77 I have a new lease on life. My tiredness disappeared. I'm on NO medication and I'm feeling well. I've decided that I don't need my oncologist nor my urologist as they both are more interested in "proven" medical procedures and were opposed to me having the treatment. Had I taken their advice who knows where I'd be now.  I seriously suggest that you follow this up with Dr Lenzo. His success rate is pretty impressive as is the success in German clinics that pioneered this treatment. The two treatments cost me $19,200 but may be cheaper now. Best wishes.

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pauldhodson
31 minutes ago, stevecavill said:

Hi Paul,

I think the key word is "potential".  It might be a game changer, it might not.  I'm a bit on the side of  your MO - it might not help you at all.    But be aware that as a randomized trial you might not even get Lutetium, you might get Cabazitaxel.

Under a clinical trial, you get very intensive care.  Outside a trial the level of supervision is a lot less.  Personally I wouldn't try Lutetium outside a trial.  Can you get a referral from your GP to the trial?


I assume you have already had docetaxel.  Have you also had Stereotactic radiation to the spine mets?  Docetaxel and SBRT have worked well for me so far.  But then again Zoladex still works for me too, as I'm not castrate resistant (yet).

 

All the best, Steve (diagnosed with metastatic at 50, now 55)

 

Hi Steve, Thanks for your message. Yes, I had Docetaxel from March to June last year. My PSA went down a bit (from 1.0 to 0.69) and soon started rising to 3.2 recently. Yes, I've recently had radiation to T5 and L4. I am just concerned that the standard of care won't give me more than a year or two from here. All of the new developing treatments are very unlikely to be offered to me at my current hospital, so I feel I need to look further afield. Cheers Paul.

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pauldhodson
33 minutes ago, Bruce said:

I don't know any more than you about the trials, but I have just started Lutetium177  treatment after conventional radiotherapy failed to stop cancer spreading in my lymph system. My treatment is being managed by Dr Nat Lenzo at Antony Street Specialist Centre, Palmyra, WA. Perhaps it might be worthwhile you giving him a call.

Bruce (NSW) 

Thanks Bruce, yes, speak to Dr Lenzo is my next cab off the rank. Have you responded to the Lu177?

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pauldhodson
8 minutes ago, Brian Lawrenson said:

I have been a patient of Dr Nat Lenzo who has a clinic in Perth. I had been on Xtandi for 8 months or so but my PSA started rising. A PET Scan showed that the cancer had spread through my body. I had two Lu177 treatments in Sydney and the PET Scan after 6 months showed that the protate cancer had disaappeared apart from a small area in one rib. Dr Lenzo was very pleased with the result. So was I. I feel that now at 77 I have a new lease on life. My tiredness disappeared. I'm on NO medication and I'm feeling well. I've decided that I don't need my oncologist nor my urologist as they both are more interested in "proven" medical procedures and were opposed to me having the treatment. Had I taken their advice who knows where I'd be now.  I seriously suggest that you follow this up with Dr Lenzo. His success rate is pretty impressive as is the success in German clinics that pioneered this treatment. The two treatments cost me $19,200 but may be cheaper now. Best wishes.

Hi Brian, Thanks for your message. Very impressive result. I have heard of others doing well, but I also understand that some don't respond. I once has a PSMA/PET scan, which 'lit up like a Christmas tree' which I believe indicates that I may be a suitable candidate. Can I ask, when you had the treatment? If I had your result, I would be over the moon. I am very worried my 10 and 11 year old kids will grow up without a Dad and if I can do anything to prevent that I will. Cheers Paul.

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timbaker

Hi Paul, 

This isn't a cure and not sure if you are limited in the exercise you can undertake with the mets in your spine but there is a lot of compelling evidence about the benefits of high intensity exercise for advanced prostate cancer and a large trial underway currently to examine its effects. I have signed up to take part and am excited by the potential as exercise has been a big part of my own self-care from day one. 

http://www.australianprostatecentre.org/grants/global-action-plan-4

I'm 53 and was diagnosed in July 2015 at the age of 50 with a PSA of 120 and mets in my right femur and left rib. I've gone pretty hard on diet, meditation, the Gawler approach, alongside conventional treatments. After chemo and ADT PSA dropped to 0.3 but has gradually risen since, currently 7, though a PSMA/PET scan in December showed the femur, prostate, and lymph nodes were all clear with just one small spot on a rib. i'm also interested in the potential of stereotactic radiation on the rib.

I do think what I have been doing for myself is making a difference. But the rising PSA suggests the zoladex/casodex combo is becoming ineffective and I will have to make some decisions on next treatment option soon - xtandi or zytiga or to try and get on to Radium 223a or something like the trial you mentioned. Would welcome other's advice. I share your frustration with the trials - I understand the medical science but I do question the whole ethics of control groups. Even with the exercise trial I risk being lumped in the control group and denied the training. 

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Patrick Turner
1 hour ago, pauldhodson said:

 Thanks Bruce, yes, speak to Dr Lenzo is my next cab off the rank.

You presently have a low Psa which means low cancer volume, but as we all know, from little things, big things grow, and with Pca, we all hate high Psa numbers. By all means, speak to Dr Lenzo. You might need a referral, and skype consultation is not cheap, and I'd have to arrange my PC to do skype. I heard this clinic offered Lu117 for $10,000 for each infusion with maximum of about 4 possible infusions. And it was available in Perth and Sydney. I have no idea what conditions are needed before the clinic lets you have Lu117. You are young, so you will cope better than guys 20 years older like myself. My Zytiga is on the wane, I heard median time was 10 mths, and onco said some men get 2 years. He also said that officially, I could not change to Xtandi enzalutamide unless forced by side effects, but with twinkle in the eye he said that when I wanna change I will give a list of side effects, and I'll get the Xtandi. I didn't qualify for Lu117 trial, but probably it will be standard treatment after present trial so I'll have to pay for it as treatment, maybe, and also for Ra223.

I read a German study which said median extension of life with Lu117 was 13 months. This a horrid short time, but maybe most men who have had Lu117 have been end stage with high cancer volume and fairly old. 

This morning I rode 58km and went up a couple of unknown streets I hadn't been before and I can certify that my ring was hangin' out 'cos the streets had slopes > 10% and when ya 70, cycling 10% hills cause HR to hit max level, there is no easy way, but despite all the hard exercise of cycling 125,000 km since 2006, cancer progresses, so I reckon no matter how hard I cycle, the Pca is right on my wheel and I can't leave it behind, so I don't think exercise can beat cancer. Maybe in other men. Not me. 

Patrick Turner. 

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Sisira

Hi Brian,

Could you please let me know the name and address of the hospital in Sydney where you received Lu177 treatment privately. Do they have the Gallium 68 PSMA PET/CT Scanning facility or else what is their most sensitive scanning available to detect the PCa mets?

I believe Dr.Nat Lenzo must be a MO specializing in treating PCa. Appreciate if you could give me also the name and address of his clinic in Perth. 

Thanks.

Sisira

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Chalkie

I have been on Xtandi five months now after chemo had dropped PSA from 50 and plateaued at 18.   Two months after stopping PSA was up over 50 again.  I decided to go take Xtandi for two reasons:

1.I had had a bad experience with nulutamide (?) I think this was a hormone blocking drug like Zytiga whereas Xtandi worked on stopping the PCA from finding testosterone

2. For me taking 4 pills at a set time on the day regardless of food intake made it easier to manage than the more complex regeme recommended for the admin of Zytiga. plus Ztiga required a secondary steroid - which I wanted to steer away from.

 

So far so good - no fatigue but some forgetfulness (could be normal for my 71 year old head) and PSA down to 9 and seems to be dropping 50% a month

 

I am very disappointed in the restrictions place on Radium 223.  but hope that when the time comes Lutetium 177 will be available for me. I understand that there may be other options coming on board too.

 

Who knows if Health Funds will cover the cost of Radium 223 or lutetium 177 if not available via PBS.

 

 

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Chalkie
7 hours ago, Brian Lawrenson said:

I have been a patient of Dr Nat Lenzo who has a clinic in Perth. I had been on Xtandi for 8 months or so but my PSA started rising. A PET Scan showed that the cancer had spread through my body. I had two Lu177 treatments in Sydney and the PET Scan after 6 months showed that the protate cancer had disaappeared apart from a small area in one rib. Dr Lenzo was very pleased with the result. So was I. I feel that now at 77 I have a new lease on life. My tiredness disappeared. I'm on NO medication and I'm feeling well. I've decided that I don't need my oncologist nor my urologist as they both are more interested in "proven" medical procedures and were opposed to me having the treatment. Had I taken their advice who knows where I'd be now.  I seriously suggest that you follow this up with Dr Lenzo. His success rate is pretty impressive as is the success in German clinics that pioneered this treatment. The two treatments cost me $19,200 but may be cheaper now. Best wishes.

 

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Chalkie

Hi Allan did health funds refund any of your chemist bills for the Lu177?

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Charles (Chuck) Maack

Hello, Paul,

 

Sorry you were unable to get in on the Lutetium-177 trial.  I note in my files regarding this product that you became aware of it from an article to which you responded on The “New” Prostate Cancer InfoLink two years ago.

 

In the meantime, you remarked that you have four metastases spots on your spine causing you issues.  I cannot recall if Xofigo/Alpharadin/Radium 223 is also in trials or more recently approved or almost approved by your government health insurance.  This medication was designed both for bone issues as well as bone pain.  If you are experiencing bone pain from that metastases you may want to look further as to either trials or availability of Xofigo in Australia.

 

The following, also from The “New” Prostate Cancer InfoLink provides a bit more information regarding both Lutetium-177 and Xofigo:

 

A first-in-human trial of actinium-225-PSMA-617

 

And this info also important to be aware regarding Xofigo:

 

Noted is a very comprehensive explanation of effects that can be caused in the administration of Xofigo/Alpharadin/Radium 223 as established by Bayer:

 

http://www.bayer.us/en/article.php?id=123160

 

We so look forward to new medications to care for our prostate cancer issues, but find that in their availability there can be so many road-blocks.

Charles (Chuck) Maack - Prostate Cancer Patient/Activist/Mentor

(A mentor should be someone who offers courtesy, professionalism, respect, wisdom, knowledge, and support to help you achieve your goals; would that I succeed)

 

Always as close as the other end of your computer to help address any prostate cancer concerns.

 

"What you leave behind is not what is engraved in stone monuments, but what is woven into the lives of others."

 

“A good character is the best tombstone. Those who loved you will remember. Carve your name on hearts, not on marble.”

 

   “Sepius Exertus, Semper Paratus, Semper Fortis, Semper Fidelis, Fraters Infinitas”

“Often tested, Always Prepared, Always Courageous, Always Faithful, Brothers Forever"

 

 

Recipient 2008 Us TOO Intl., Inc., Prostate Education & Support Network 1st “Edward C. Kaps Hope Award”

Recipient 2012 Prostate Cancer Research Institute (PCRI) “Harry Pinchot Award”

Recipient 2016 Us TOO Intl., Inc. Certificate for 20 Years Dedication/Inspiration

 

 Published papers:

“A Wake Up Call To Men & The Women Who Care For Them” JCPCR-06-00189 Volume 6 issue 1 - 2016: http://tinyurl.com/3djfgve

“A Prostate Cancer Patient’s 24-Year (1992-2016) Continuing Journey from Diagnosis to Treatment to Recurrence to Mentoring” JCPCR-04—201604 Volume 4 issue 4 – 2016:  http://tinyurl.com/hcxuxv9

“Newly Diagnosed with Prostate Cancer? - A Mentor/Patient Discussion” May 23, 2017 Biomedical Journal of Scientific & Technical Research (BJSTR) http://biomedres.us/pdfs/BJSTR.MS.ID.000110.pdf

“Prostate Cancer Advocacy and Mentoring Support” – published November 22, 2017 in the journalHolistic Approaches in Oncotherapy” HAOT-17-OPN-0004 1.1 (2017): 14-15;  https://scientiaricerca.com/srhaot/pdf/SRHAOT-01-00003.pdf

“Medical Advice” or “Opinion” – The Important Difference -  Acta Scientific Medical Sciences Volume 2 Issue 1 January 2018:

https://www.actascientific.com/ASMS/pdf/ASMS-02-0019.pdf

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PeterH

Hi Paul,

Fortunately, I've not needed to learn about the various chemo/adt therapies, but there's a rapidly growing body of evidence showing that supporting them with diet can be very beneficial. Even Mark Moyad, in his last talk to our group, said he was "excited" by the potential of a ketogenic diet. If you're not familiar with this, a great talk explaining it is by Colin Champ, a radiation oncologist and A. Prof at Pitsburg Hospital.

image.png.08e3f26639a72e6ceb8ee2a6463614a8.png

 

Even though the diet is NOT recommended as a stand-alone treatment, there really are a lot of good reasons (i.e. science) why it can help. A Dr Abdul Slocum in Turkey uses a keto diet as Step 1 in a 6-pronged attack that, although not prostate specific, has achieved some truly amazing results. The plan is to first stress the tumours as much as possible, first by diet and then by lowering blood glucose to a slightly hypoglycaemic level, then administer chemo, then, in the days following, apply hyperthermia and hyperbaric O2. You can see an interview where he explains the process and gives examples of cases here:

image.png.eda21eee561b24f790daa6bf131aabb8.pnghttps://www.youtube.com/watch?v=tL8rQ3aNvhs

You'd likely have trouble getting anyone to supply hyperebaric O2 treatment (although they're happy to prescribe it for radiation burns) but the rest of it might be possible if you shop around a little to find an oncologist prepared to look at the evidence. In my own case, with an almost-positive margin, my PSA started rising soon after surgery. It fell to 0.03 after EBRT, but then immediately started rising again. This inspired me to try a keto diet, even though it was the opposite of what I'd always believed to be healthy. My PSA started dropping again after just 2 months on the diet, and my last detectable PSA was in Feb 2016.

 

If anyone would like to follow up on this, don't hesitate to get in touch.

 

Best wishes

 

Peter

 

 

 

 

 

 

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pauldhodson
21 hours ago, timbaker said:

Hi Paul, 

This isn't a cure and not sure if you are limited in the exercise you can undertake with the mets in your spine but there is a lot of compelling evidence about the benefits of high intensity exercise for advanced prostate cancer and a large trial underway currently to examine its effects. I have signed up to take part and am excited by the potential as exercise has been a big part of my own self-care from day one. 

http://www.australianprostatecentre.org/grants/global-action-plan-4

I'm 53 and was diagnosed in July 2015 at the age of 50 with a PSA of 120 and mets in my right femur and left rib. I've gone pretty hard on diet, meditation, the Gawler approach, alongside conventional treatments. After chemo and ADT PSA dropped to 0.3 but has gradually risen since, currently 7, though a PSMA/PET scan in December showed the femur, prostate, and lymph nodes were all clear with just one small spot on a rib. i'm also interested in the potential of stereotactic radiation on the rib.

I do think what I have been doing for myself is making a difference. But the rising PSA suggests the zoladex/casodex combo is becoming ineffective and I will have to make some decisions on next treatment option soon - xtandi or zytiga or to try and get on to Radium 223a or something like the trial you mentioned. Would welcome other's advice. I share your frustration with the trials - I understand the medical science but I do question the whole ethics of control groups. Even with the exercise trial I risk being lumped in the control group and denied the training. 

 

Hi Tim, Thanks for your comments. I understand it is not a cure, but if I got a response like Brian, I would be over the moon. I feel as though time is running out and I need something to give me some time for new therapies to come along. I participated in an exercise clinical trial through Edith Cowan University over her in Perth. The lead researched Dr Nicholas Hart is examining the benefits of exercise (especially strength training) on guys with spinal mets. I was put in the control group, which meant do minimal exercise for 12 weeks, but then, at the end, I was given access to the training facility and I worked with a team of exercise physiologists at the university to develop a tailored program for me. This lasted for 12 weeks towards the end of last year. It was great, but I had to pull out early due to pain in my lower back, which turned out to be the tumour in L4 growing significantly during the period I was on the program. I also look after my diet (plant based, minimal sugar, low fat) and I was doing regular meditation (Gawler approach) as well as many supplements which are known to kill cancer, or strengthen bones, but all the while I was doing this, my tumour were growing. I finished chemo in June last year and my PSA got down to 0.69 and then soon afterwards started to rise. They have moved me on to Xtandi and fatigue has been the biggest issue. I take it at night and sleep pretty well and my PSA has come down and I generally feel better. Cheers Paul

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pauldhodson
19 hours ago, Patrick Turner said:

You presently have a low Psa which means low cancer volume, but as we all know, from little things, big things grow, and with Pca, we all hate high Psa numbers. By all means, speak to Dr Lenzo. You might need a referral, and skype consultation is not cheap, and I'd have to arrange my PC to do skype. I heard this clinic offered Lu117 for $10,000 for each infusion with maximum of about 4 possible infusions. And it was available in Perth and Sydney. I have no idea what conditions are needed before the clinic lets you have Lu117. You are young, so you will cope better than guys 20 years older like myself. My Zytiga is on the wane, I heard median time was 10 mths, and onco said some men get 2 years. He also said that officially, I could not change to Xtandi enzalutamide unless forced by side effects, but with twinkle in the eye he said that when I wanna change I will give a list of side effects, and I'll get the Xtandi. I didn't qualify for Lu117 trial, but probably it will be standard treatment after present trial so I'll have to pay for it as treatment, maybe, and also for Ra223.

I read a German study which said median extension of life with Lu117 was 13 months. This a horrid short time, but maybe most men who have had Lu117 have been end stage with high cancer volume and fairly old. 

This morning I rode 58km and went up a couple of unknown streets I hadn't been before and I can certify that my ring was hangin' out 'cos the streets had slopes > 10% and when ya 70, cycling 10% hills cause HR to hit max level, there is no easy way, but despite all the hard exercise of cycling 125,000 km since 2006, cancer progresses, so I reckon no matter how hard I cycle, the Pca is right on my wheel and I can't leave it behind, so I don't think exercise can beat cancer. Maybe in other men. Not me. 

Patrick Turner. 

 

Thanks Patrick. My Radiation Oncologist, who is a world expert and published I the Lancet, said that PSA may not be very instructive in my case. Further to that I have cancer at T5/T6/T7 and L4 which have progressed. The big worry is that I will end up with a spinal e, which could lead to paralysis, which could be life threatening due to the location. I have had spot radiation to T5 and L4 and I'm on Xgeva and calcium/D3 so hopefully that will buy me some time. I also like to cycle, but I still have a prostate which gets quite painful with too much cycling. Cheers Paul,

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pauldhodson
15 hours ago, Chalkie said:

I have been on Xtandi five months now after chemo had dropped PSA from 50 and plateaued at 18.   Two months after stopping PSA was up over 50 again.  I decided to go take Xtandi for two reasons:

1.I had had a bad experience with nulutamide (?) I think this was a hormone blocking drug like Zytiga whereas Xtandi worked on stopping the PCA from finding testosterone

2. For me taking 4 pills at a set time on the day regardless of food intake made it easier to manage than the more complex regeme recommended for the admin of Zytiga. plus Ztiga required a secondary steroid - which I wanted to steer away from.

 

So far so good - no fatigue but some forgetfulness (could be normal for my 71 year old head) and PSA down to 9 and seems to be dropping 50% a month

 

I am very disappointed in the restrictions place on Radium 223.  but hope that when the time comes Lutetium 177 will be available for me. I understand that there may be other options coming on board too.

 

Who knows if Health Funds will cover the cost of Radium 223 or lutetium 177 if not available via PBS.

 

 

 

Hi Chalkie, I seem to be responding well to Xtandi. I hope I get a good run out of it. I get the fatigue, not sure about forgetfulness, I don't think it's been an issue for me. I doubt if my health fund (HBF) will cover any medicines not on the PBS.

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pauldhodson
10 hours ago, Charles (Chuck) Maack said:

Hello, Paul,

 

Sorry you were unable to get in on the Lutetium-177 trial.  I note in my files regarding this product that you became aware of it from an article to which you responded on The “New” Prostate Cancer InfoLink two years ago.

 

In the meantime, you remarked that you have four metastases spots on your spine causing you issues.  I cannot recall if Xofigo/Alpharadin/Radium 223 is also in trials or more recently approved or almost approved by your government health insurance.  This medication was designed both for bone issues as well as bone pain.  If you are experiencing bone pain from that metastases you may want to look further as to either trials or availability of Xofigo in Australia.

 

The following, also from The “New” Prostate Cancer InfoLink provides a bit more information regarding both Lutetium-177 and Xofigo:

 

A first-in-human trial of actinium-225-PSMA-617

 

And this info also important to be aware regarding Xofigo:

 

Noted is a very comprehensive explanation of effects that can be caused in the administration of Xofigo/Alpharadin/Radium 223 as established by Bayer:

 

http://www.bayer.us/en/article.php?id=123160

 

We so look forward to new medications to care for our prostate cancer issues, but find that in their availability there can be so many road-blocks.

Charles (Chuck) Maack - Prostate Cancer Patient/Activist/Mentor

(A mentor should be someone who offers courtesy, professionalism, respect, wisdom, knowledge, and support to help you achieve your goals; would that I succeed)

 

Always as close as the other end of your computer to help address any prostate cancer concerns.

 

"What you leave behind is not what is engraved in stone monuments, but what is woven into the lives of others."

 

“A good character is the best tombstone. Those who loved you will remember. Carve your name on hearts, not on marble.”

 

   “Sepius Exertus, Semper Paratus, Semper Fortis, Semper Fidelis, Fraters Infinitas”

“Often tested, Always Prepared, Always Courageous, Always Faithful, Brothers Forever"

 

 

Recipient 2008 Us TOO Intl., Inc., Prostate Education & Support Network 1st “Edward C. Kaps Hope Award”

Recipient 2012 Prostate Cancer Research Institute (PCRI) “Harry Pinchot Award”

Recipient 2016 Us TOO Intl., Inc. Certificate for 20 Years Dedication/Inspiration

 

 Published papers:

“A Wake Up Call To Men & The Women Who Care For Them” JCPCR-06-00189 Volume 6 issue 1 - 2016: http://tinyurl.com/3djfgve

“A Prostate Cancer Patient’s 24-Year (1992-2016) Continuing Journey from Diagnosis to Treatment to Recurrence to Mentoring” JCPCR-04—201604 Volume 4 issue 4 – 2016:  http://tinyurl.com/hcxuxv9

“Newly Diagnosed with Prostate Cancer? - A Mentor/Patient Discussion” May 23, 2017 Biomedical Journal of Scientific & Technical Research (BJSTR) http://biomedres.us/pdfs/BJSTR.MS.ID.000110.pdf

“Prostate Cancer Advocacy and Mentoring Support” – published November 22, 2017 in the journalHolistic Approaches in Oncotherapy” HAOT-17-OPN-0004 1.1 (2017): 14-15;  https://scientiaricerca.com/srhaot/pdf/SRHAOT-01-00003.pdf

“Medical Advice” or “Opinion” – The Important Difference -  Acta Scientific Medical Sciences Volume 2 Issue 1 January 2018:

https://www.actascientific.com/ASMS/pdf/ASMS-02-0019.pdf

 

Thanks Chuck, Much appreciated - as always.

 

Pain is not my main issue, though I do get pain. As mentioned to Patrick above, my big concern is a spinal fracture/collapse. This happened to my mother 7 years ago at the age of 63 when she had lung cancer. She had reconstructive surgery but never walked again and died only 5 weeks after that. I want to stick around, I'm only 50!

Cheers Paul.

P.s. I will have a good read of your links when I get a chance.

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pauldhodson
5 hours ago, PeterH said:

Hi Paul,

Fortunately, I've not needed to learn about the various chemo/adt therapies, but there's a rapidly growing body of evidence showing that supporting them with diet can be very beneficial. Even Mark Moyad, in his last talk to our group, said he was "excited" by the potential of a ketogenic diet. If you're not familiar with this, a great talk explaining it is by Colin Champ, a radiation oncologist and A. Prof at Pitsburg Hospital.

image.png.08e3f26639a72e6ceb8ee2a6463614a8.png

 

Even though the diet is NOT recommended as a stand-alone treatment, there really are a lot of good reasons (i.e. science) why it can help. A Dr Abdul Slocum in Turkey uses a keto diet as Step 1 in a 6-pronged attack that, although not prostate specific, has achieved some truly amazing results. The plan is to first stress the tumours as much as possible, first by diet and then by lowering blood glucose to a slightly hypoglycaemic level, then administer chemo, then, in the days following, apply hyperthermia and hyperbaric O2. You can see an interview where he explains the process and gives examples of cases here:

image.png.eda21eee561b24f790daa6bf131aabb8.pnghttps://www.youtube.com/watch?v=tL8rQ3aNvhs

You'd likely have trouble getting anyone to supply hyperebaric O2 treatment (although they're happy to prescribe it for radiation burns) but the rest of it might be possible if you shop around a little to find an oncologist prepared to look at the evidence. In my own case, with an almost-positive margin, my PSA started rising soon after surgery. It fell to 0.03 after EBRT, but then immediately started rising again. This inspired me to try a keto diet, even though it was the opposite of what I'd always believed to be healthy. My PSA started dropping again after just 2 months on the diet, and my last detectable PSA was in Feb 2016.

 

If anyone would like to follow up on this, don't hesitate to get in touch.

 

Best wishes

 

Peter

 

 

 

 

 

 

 

Thanks Peter, I have been (mostly) plant based since diagnosis. I lost 12KG, but I'm not sure if it's done me much good. Interesting you said that a keto diet 'shocks' the tumours, I was in touch with a guy on Facebook, who was convinced a virtual starvation diet would 'shock' the cancer. He fasted for 45 days, attempting 60 days, but he had to give up. He had scans soon after and his cancer had spread significantly. He reluctantly went onto chemo and his PSA went from 500 to 5 and all his pain went away. Is a ketogenic diet, low-carb? Is the idea to induce ketosis? Is it loaded with high protein foods like meat/eggs/cream? I wonder about the sense of this as Mark Moyad himself says that heart heath = prostate health. Cheers Paul.

 

p.s. I will watch the YouTube video when I get a chance.

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timbaker
1 hour ago, pauldhodson said:

 

Hi Tim, Thanks for your comments. I understand it is not a cure, but if I got a response like Brian, I would be over the moon. I feel as though time is running out and I need something to give me some time for new therapies to come along. I participated in an exercise clinical trial through Edith Cowan University over her in Perth. The lead researched Dr Nicholas Hart is examining the benefits of exercise (especially strength training) on guys with spinal mets. I was put in the control group, which meant do minimal exercise for 12 weeks, but then, at the end, I was given access to the training facility and I worked with a team of exercise physiologists at the university to develop a tailored program for me. This lasted for 12 weeks towards the end of last year. It was great, but I had to pull out early due to pain in my lower back, which turned out to be the tumour in L4 growing significantly during the period I was on the program. I also look after my diet (plant based, minimal sugar, low fat) and I was doing regular meditation (Gawler approach) as well as many supplements which are known to kill cancer, or strengthen bones, but all the while I was doing this, my tumour were growing. I finished chemo in June last year and my PSA got down to 0.69 and then soon afterwards started to rise. They have moved me on to Xtandi and fatigue has been the biggest issue. I take it at night and sleep pretty well and my PSA has come down and I generally feel better. Cheers Paul

Hey Paul, sorry I meant the exercise thing is not a cure, but i agree some of the new treatments sound promising and yeah I am in the same boat of trying to buy more time for better treatment options to become widely available. I can empathise too, I am 53 was 50 when diagnosed, and have two kids aged 12 and 15. I feel like the whole protocol for advanced prostate cancer was developed around a fairly elderly patient population and that the standard protocol is particularly hard on younger men who have families, are still trying to work and there's need to be a different protocol tailored for these men. I don't think there are magic cures but I do think a holistic approach of diet, exercise, meditation, alongside conventional medicines needs to be promoted. I wish you well and hope the new medication does the trick for you. The more I learn the more I realise how much modern medicine doesn't know. I've found meditation especially helpful even just from a mental health perspective. 

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pauldhodson

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.

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Charles (Chuck) Maack

I just wanted to remark on Chalkie's post to explain his reference to nilutamide and Zytiga.  Nilutamide/Nilandron is an antiandrogen similar to Casodex/bicalutamide.  Xtandi/enzalutamide could be considered a "super" antiandrogen with these drugs developed to hopefully block the multitude of androgen receptors on cancer cells from testosterone access, and Xtandi more effective in doing so.  Zytiga/abiraterone acetate, on the other hand, could be considered a super LHRH agonist or antagonist in shutting down the production locations of testosterone.  LHRH agonists and antiagonist only block such production by Leydig Cells in the Testicles, whereas Zytiga blocks such production similarly in Testicular production but that also produced in the adrenal glands and that which cancer cells can produce within themselves.  

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