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Rozi

Hi Barree... I have had, for some time, a newspaper clipping of you after your Lutetium treatment. I notice it mentions 30 participants and that some halved their PSA and some were undetectable. Do you have any figures on recent stats for these participants?If not, do you know how I could find them? If you can't help, I'll try and chase up Prof Michael Hoffman, who led the trial. He's also involved in the 200 strong trial that is currently running. My husband is waiting to see if he's accepted to that trial buteven if he is, he might get the chemo and not the Lutetium. There are so many things to think about and research has become my middle name. Thanks for inviting me to join the telephone hook up the other day. It was interesting. Cheers.. Ros 

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flyingphil

Hi Rozi,

 

I was one of the Peter MAC trial participants for whom Lutetium provided little respite (after 3 cycles) and I am now on my seventh cycle of Cabazitaxel. 

 

If I can answer any of your questions I am happy to do so.

 

Best wishes,

 

Flyingphil

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Patrick Turner
1 hour ago, Rozi said:

30 participants and that some halved their PSA and some were undetectable.

The trial was a phase II at Peter Mac in Melbourne from about August 2016 onwards, and I was not part of it.

About a year later I emailed Professor Hoffman and inquired how the 30 men fared, because I thought I might need to get Lu177 for my Pca.

Well, I was especially polite to the dear Professor but he was more or less totally diplomatic in not being able to say how each man fared, or why some had no response to the treatment. More time passed and the official trial results were published, and there was a video made about the treatment which showed how one man was riddled with Pca mets in nearly every bone, and how all his mets nearly disappeared after the 4 doses. So this fellow was able to get out of bed and he had no pain. I don't know how well that man is now. But, Lu177 treatment was devised in Germany so they would know far more about who is likely or not to benefit. The ligand chemical which binds the Lu177 in the form of lutetium chloride to PsMa expressing cells of Pca is patented, and owned by a Big Pharma company Novatis so when you pay aud $10,000 for a shot of Lu177, some very big wealthy companies do very well from your cancerous situation. Many of the top line treatments for various diseases may never be paid for by Medicare, and never appear in public hospitals because our Govt always wants to pay the lowest subsidy, and Oz is a small market so those who want Lu177 must pay for all of it and I have not heard of anyone having its cost paid for by private insurance.

The official results from the Hoffman trial give a fairly good picture of whether anyone should try it. No one man needs to know the case histories of the 30, or those of maybe many more in Germany. The Germans said that the mean extension to life with Lu177 was 14 months, so some got years, and some got nothing.

From what little I do know, to qualify getting Lu177, you should have failed with chemo, and I sure did, so I was referred to Thranostics Australia run by a Dr Lenzo, and after spending about aud$40,000, My Psa went from 25 to 3.7 last week after 4 infusions in Sydney, not a bad result. But Nobody could assume the same would happen to them even if their PsMa Ga68 scans show they ought to benefit. This is why nobody can assume anything about Pca, we are all going to have different outcomes. Dr Lenzo has done maybe 700 Pca patients since he began in Oz about 3 years ago. He said there's a 70% chance of "success" which if you read his website carefully may be defined a little more than I have time for here. I am glad to have tried Lu177, and it gives me time to look around for the next treatment because Lu177 is not a cure. With all Pca treatments, each one kills only most Pca cells at best, leaving the treatment resistant cells to grow to kill you unless something else of found to be worth trying. So I may end up trying other things after DNA analysis and they may succeed or fail, and be darn expensive, and then when all is tried and nothing will work, then I need to die happily dreaming cheerfully about the nurses who cared for me along the way. At least Pca often gives a man time to try things, and go from one thing to another, and all men need to be on guard and ready to get something else. I might get Ra225 when Lu177 is found to be unable to kill all my bone mets.

I heard that Peter Mac is to trial Lu177 with men newly diagnosed so its now considered OK for primary treatment where an RP could be impossible like if was for me because Pca was out of capsule so docs could not see what they were cutting into, with my Gleason 9, and if there was already a lot of mets at diagnosis. This makes sense to me, but in 2009 it was not available here and was considered end stage treatment, and perhaps the mean life extension might be a lot longer for patients who get Lu177 as primary treatment.

There is trial at St Vincents for men to get Lu177 + enzalutamide because a Professor Louise Emmett thinks that the enzalutamide makes Pca mets express more PsMa so this than makes more Lu177 cuddle up to the Pca cells and shoot the crap out of Pca with the beta particles, in other words Professor Emmet likes to supercharge the effects of Lu177, and yea, I'm all for that, and I was put on enzalutamide ( paid by Medicare ) after Lu177 No 3, and so I expect a very low Psa in a few weeks time when we might know how well I am going. My 4th Lu177 was only 10days ago. The mets I have in my bones were not big enough to cause microfractures which cause terrible pain, and an MRI and CT scan showed them up as pea sized in pelvis and a femur, in the inner bone matrix, away from the fibrous dense outer bone layers. But even these small mets were enough to cause some pain, but now that has all gone. It is coincidental that my right hip joint has become allergic to cycling but docs at Canberra Hospital calmy suggested that if the Pca goes down so far to "well under control" that they'll give me a new hip joint. At 72, I would be to old to ever live long enough to wear the joint out, especially since I have retired from building work long ago. During a previous Psa nadir of 0.5 with Cosadex added to ADT at Feb 2017, I had both knee joints replaced because although I could cycle anywhere I wanted, I could hardly walk. I was re-born, and 6 months later was cycling as fast and as far as I had some 5 years ago which amazed a few blokes I used to cycle with at that time. How magical is this? Wonderful stuff.

For all the readers of this site, I suggest there may be a decent way to get a reprieve from your otherwise soon to be expiry date. Always look on the bright side. I have found doctors really do like keeping ppl alive as long as possible. But just make sure you don't expect miracles. You must pay a lot for what the docs have got, but hey, you can't take the dough with you when you begin to un-live. 

All the best to all, good luck,

Patrick Turner. 

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Rozi

hello again...... thanks for replying... I'm just trying to get a handle on how good Lut-177 really is...... naughty of me to want to know before the trials have been done but I've never been a patient person...... once again, thanks for replying :) 

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Barree

Hello Rozi,

The following is a link to the original Lancet Oncology article of Professor Hofmans.https://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(18)30198-0/fulltext.

Patrick's Turner's detailed response is an excellent summary of the Pro & Cons of Lutetium177  treatment from a patient point of view.

Results for current trials will not be collated and published until the trials are completed. 

Cheers,

Barree

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Chalkie

Hi All

I was involved in the recent Lute177 trial at PeterM in Melbourne.   Unfortunately for me my PSA continued to rise and at last reading it was getting close to 2000!!!  up from 125 when the trial started in December.

Side effects of the infusions were minimal - pain (intermittent) and not too debilitating were the only issues.  Pain killers provided plenty of relief.

While on the trial I continued normal daily activities and won a board event at my local Golf Club.  

More recently fatigue has been an issue - probably due to some colateral damage caused by the Lute. 

Scans during the trial indicated the tumors had a good uptake of the Lute but the issue seems to be that new mets were developing and these may not have responded to the Lute.   As a result, I assume that my low platelet count is due to the damage that was caused to the mechanisms that develop red blood cells etc..

 

I have since had two infusions of the chemo cabazetaxel (which is the other arm of the trial)  Fatigue has been an issue for me - but during the last week my energy levels have improved and I  I am able to manage 30 mins on the exercise bike at the gym and no longer have to ease off the resistance.  

 

Significantly the pain that was bugging me a during the Lute trial is no longer an issue.  And side effects from the chemo are not evident - fatigue may be an issue but I am putting this down the earlier damage from the Lute infusions.

 

More will be revealed next week.  I am having lots of scans etc on Friday and I see the oncologist on the following Tuesday when I am due for the 3rd Chemo infusion.   

 

They are keen to see what has happened over the past 6 months - the possibility of old mets being shrunk is what they will be interested in - and given the pain tweeks that I notice are gone,  some may have vanished.   They also say that some men have had "spectacular" responses to the Cabazetaxel.   Again my reading of the pre-trial docs indicated that it, like the Lute177,  not all men respond and they are unable to identify who will and who won't 

 

Chalkie

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Charles (Chuck) Maack

I appreciate the explanations provided by both Patrick Turner and Chalkie.  Provides two sides to the effectiveness, though I certainly wish Chalkie's would have been positive.  For certain I will be looking forward to further posts by the both of you as the journey continues.  I am taking the liberty of copying the posts of both of you to share with other PCa patients whom I know are anxious to learn more regarding this treatment in trials but appearing for most as showing effective results.  By Chalkie providing his negative experience, we are aware that much must depend on the status of the individual.  I will be looking forward to Chalkie's experience with Cabazitaxel/Jevtana, since here, too, is a medication we are still learning about with similar pros and cons.

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