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timbaker

Theranostics

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timbaker

Hi All,

Met a guy recently who had been to this clinic in Germany for what they call PSMA therapy or theranostics, - http://psmainfo.org/ - which seems to me similar to if not the same as the Lu-177 treatment although I am not entirely clear on the details.  It was expensive but he had great results which has allowed him to avoid hormone therapy for now. As I am finding hormone therapy increasingly debilitating and suffering badly from the side effects I am very keen to explore alternatives. My understanding is Lu-177 trials here are only open to those for whom other treatments have failed but wondered if anyone had travelled to Germany or elsewhere for this or similar treatment, costs involved and results achieved. Many thanks. I am prepared to find the funds for alternatives to ongoing hormone therapy if the results are worth it. Hope you are all doing well. 

cheers

tim

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pauldhodson

Hi Tim, you can get the treatment here in Sydney and Perth, via Thernostics (http://theranostics.com.au/). The treatment is approx. $10,000 per infusion and usually between 2-6 infusions in a course. I was assessed using 3 PET scans, but deemed unlikely to respond. Best way is obviously via clinical trials, where you get free treatment. I was not eligible for any of these, but I believe they are the LuPin Trial (for castrate resistant guys) and the TheraP trial (comparing Lu177 to Cabazitaxel).

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timbaker

Thanks Paul, how you doing? Any idea what determines if you are likely or unlikely to respond. I'm still getting effect from ADT but side effects really knocking me around. Hope you're doing well. How was the Bali trip and the big bike ride?

 

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Bruce

I have had one session of the Theranostics treatment with an encouraging result so far. From what I have read it seems to me my cancer was not as advanced as the criteria being applied to the trials. When I first met with Nat Lenzo of Theranostics he told me his treatment  was the same as currently  provided in Germany.  

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pauldhodson
1 hour ago, timbaker said:

Thanks Paul, how you doing? Any idea what determines if you are likely or unlikely to respond. I'm still getting effect from ADT but side effects really knocking me around. Hope you're doing well. How was the Bali trip and the big bike ride?

 

 

Hi Tim, it all comes down to your 'PSMA Uptake' mine was low to moderate and in the important areas (lungs and liver) it was low, so they advised against it. This uptake can only be assessed with PET scans (I had 3, a PSMA Gallium 68, a PET Octreotate and an FDG Pet scan). Bali was great and the ride to conquer cancer, last October was very successful, my team of 12 riders raised $46,000. I wish I could say I was doing well, but my cancer has progressed a lot since last November. Nodules in my lungs have increased in size and I now have two small liver mets, which I'm not thrilled about. My Oncologist will be moving me to immunotherapy soon. Cheers Paul.

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DaveK1200

Hi Tim,

 

I see that you wrote  ....  "As I am finding hormone therapy increasingly debilitating and suffering badly from the side effects I am very keen to explore alternatives".

 

Perhaps you might be interested in trying what I've been taking for over 2 years now as I'm very happy with the results.

 

I was originally taking them alongside ADT, but decided to stop ADT almost 2 years ago because of its bad side effects.

 

I know what I am taking is scientifically unproven, and that it might not help everyone.

But it certainly seems to be helping me and you never know until you try.

It's relatively inexpensive costing me about $1200 per year.

 

If you'd like more info please send message or have a read of thread in the "My Story" section.

 

Good luck to everyone.

 

Cheers 

 

Dave.

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Patrick Turner
On 3/1/2019 at 3:12 PM, timbaker said:

My understanding is Lu-177 trials here are only open to those for whom other treatments have failed

Many who have now tried Lu177 were forced to spend the money because all other things including chemo failed to work. 

I had my No 3 Lu177 infusion on 28 Feb 2019 at Waratah Private Hospital in Hurstville, 500M away from the railway station, so easy to get to with public transport.

Psa was 25 before I began treatment last year and each infusion is 8 weeks apart. Psa at 2 weeks before No 3 earlier this week last week was 17, so hardly any Psa change has occurred.

But the latest PsMa scans showed all the many soft tissue mets are gone and most of the many bone mets have reduced in size but my right hip has become sore and I have been forced to quit cycling. I can walk 2km, although slowly, and do all housework and a lot of house renovations to prepare for my end time days.

So while soft tissue mets are free of Pca which produces PsMa, there may be Pca that does not make PsMa and it seems that is minimal at the moment.

 

I had Dr Lenzo look after me for No 1 infusion, then a Dr Macfarlane for No 2, and now at Waratah I had a Dr Louise Emmett, who has a very illustrious academic record and was involved in research on Pca at St Vincents. At Waratah, the whole 6th floor seems entirely new, and is fitted out with many chairs for chemo and nuclear medicine or many types, and it is administered by Genesis Care and you can google all this to know more.

Dr Emmett said that Psa reduction has not been stunning in my case. But it does seem that overall I am doing fairly well, but my sore hip could be due to Pca which is still growing and possibly is now producing the majority of my Psa of 17, and easy to think possible because compared to many men getting Lu177, my Psa of 17 is very low, with men having Psa of maybe 200. Unfortunately, my Psa was very low at 6.3 when diagnosed in 2009 with a Gleason 9 inoperable PG tumour. So my Psa of 17 might be equal to another man's 100.

Dr Emmett said that its highly likely my hip met is mutated Pca and may not be responding to Lu177.

If not stopped, this can kill me; mets in the top of a femur ball joint and pelvis are not uncommon. 

So she suggested I re-start Zytiga asap, which tends to make tumours make more PsMa thus make more Lu177 hook onto tumour. This should more than double the Pca killing effects of Lu177. But I may need to have DNA analysed and she said its likely I have Brca2 mutation and she said something about PARP inhibitors and so there seems to be a good few possibilities for the time after I complete 4 x Lu177 infusions. While getting my infusions, the only other patient in this brand new hospital ward was a man from NZ having No 5 Lu177, and he said it was the last throw of the dice. 

In Today's Australian, there were two big articles about the latest tailored cancer therapy which does DNA analysis of both normal healthy DNA and the cancer DNA, and then DNA specialists can see what chemo might work, and these newspaper stories were based on two women who had rare cancers. Nothing was said about Pca. But in some cases where a drug to prevent organ rejection after a transplant might be found to cure a cancer patient. The trouble is that only transplant patients get the drug for $6:30 and any one else with a different ailment such as cancer has to pay full price, could be hundreds of thousands of $$$. The PBS scheme does not cover all ppl using a particular drug, and it is a grossly unfair situation. This tailored medicine is done to make the immune system see the cancer to kill it, or find what chemo might work; but read today's March 2 Australian, its probably online, and there is some of the future for cancer treatments, but now, only very few have access to anything like this. 

Costs of DNA analysis are eye watering, as are the costs of private doctors.

Anyway, there is at least a chance to get Lu177 to work better on me that it has already, and to attack what is left because is does seem to me that because I have now had Pca since maybe 2005, it almost certainly has mutated.

I have arranged to get an MRI of my right hip, and that may tell me, Dr Emmett and two docs at Canberra Hospital about just what damage has occurred in hip. I probably would not be allowed to have a replacement hip joint. 

If MRI does not show all, an FDG Pet scan may show more. Dr Emmett said she wanted me back on my bicycle asap, and she was well aware of many successes where men got many years more instead of maybe only a year or less. Well, Dr Emmett is seriously optimistic, while I think I might be crippled soon, even if the cancer is stopped. Cycling again is a kind of dreamy possibility. 

It is good to get a positive doctor attitude rather than the subdued enthusiasm of some docs who seem to think a patient like me is basically stuffed, but they don't have the courage to say so.

 

Nevertheless, I know one man in this group has had 7 x Lu177 infusions. Dr Lenzo said a man in Germany where Lu177 treatment was first invented has had 10 infusions.

After No 2 infusion 8 weeks ago I had a week of dryish mouth, not total dryness, and I had some slight pain in 5 joints including hip. Those all mostly became painless after 2 weeks and complete saliva production re-started. It is too early to tell you what slight or heavy side effects are ahead of me, but there will be some if I resume taking Zytiga which made me very sensitive to hot day temperatures and upset my HR. I have zero idea what side effects I might have when I get No 4 Lu177 while taking Zytiga. I may find PBs will not fund a return to taking Zytiga. Maybe my oncologist might be able to write a letter to get around this rule, but when Zytiga ( abiraterone ) failed last year he could not change me to Xtandi, ( enzalutamide ) because a younger registra doc objected strongly because it risked them getting punished by those in charge of Pbs. I had enough side effects to justify a change. But I don't really know yet what is ahead of me. I do know a man who had PARP tests and who was put onto Xtandi after chemo and psa went from 40 to 400 real quickly, but his Pca took him to stage 4 with liver mets and needing Lu177 all in only 3 years. He is not well. 

So as usual, my uncertainty about life continues.

 

An old friend is selling ASEA products. So far there is not one single thing about ASEA products that indicates it is not exactly the same type of product as Snake Oil, an ineffective alternative to all Big Medicine treatments and far cheaper. My friend sent me many testimonials which cannot be legally published publically because they talk of remissions and cures of cancer, but before I believe a single word of any of these, they must be verified by a registered doctor, and that just will not happen. Quack remedies have only the placebo effect. But when claims are made in 2 screen fulls of text only, and no scans, and no 3rd party verification, it is virtually impossible to believe what is written. The world that is filling up fast with a pile of fake information provided by money hungry  marketeers. There are professional testimonial writers beavering away. All bullshit.

 

This is the latest news from me, and my theme is that men with Pca at stage 4 cannot be sure of anything at all.

But Lu177 is available in Sydney at Waratah Private Hospital at Hurstville, and it looks like it may continue for quite some time. Effective immune therapy or chemo therapy based on DNA analysis is a long way from being widely available for an affordable price. 

Patrick Turner. 

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Bruce

Thank you for your informative post. The best I have read on this topic.

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Patrick Turner
41 minutes ago, Bruce said:

Thank you for your informative post. The best I have read on this topic.

We all fear any voyage into an unknown, but if we see how others fear and manage we may be strengthened, so I believe. 

In Canberra Times today there was a big story about some young DIY types who were buying gene splicing kits online that allowed them to modify DNA. Immediately, at the speed of light, a "norty thort" came into my mind, "ah, just what I need to alter my immune system DNA". I'd be able to edit my DNA code for "dee-stroy-prostate-can-cer" and press "enter" then shove the changed body sample back in with a syringe and sit back and wait for the DIY cancer fix to give me a Psa of 0.1 in a month. But kids are able to use the kit to make insects that glow in the dark. Already there is high concern among oldies that the kids will quickly find ways of being evil and reckless with DNA changes.

But when I loose my glasses that have fallen somewhere on the floor at night, I don't need a light. I can just lower me strides and me PG is so radioactive after countless attempts to poke at with various radiations that there's a bright green - purple glow a comin from me pelvis, and yes, there are me glasses.

 

Big Medicine likes to charge huge prices for DNA analysis, because they know they are dealing with yet another  rich oldie who is desperate. But be prepared for much cheaper analysis in future. And maybe such analysis paves the way for more successful chemo or radiation, or immune therapy.

Some of us might live long enough to see these benefits arrive as routine therapy. In my time, I was in time to get Psma scans, and then get Lu177, in Australia, without the hassles of going to Germany or USA. 

We all know it is a terrible world we live in, but hey, there are some really good things about the world......

Patrick Turner. 

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