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Results after four Lu177 infusions.


Patrick Turner
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Hi all.

I have just had PsMa Ga68 PET CT scan and blood tests to show what has happened to my Pca at 5 weeks after the 4th shot of Lu177.

The Psa has reduced from 26 before I had first Lu177 shot to 1.6 now. All my other blood test numbers are fairly normal.

The SUV or Specific Uptake Value for how much Lu177 was taken up after 4th Lu177 in 8 areas of my body compared to after 2nd Lu177 had average value of 0.45, but ranged from 0.126 to 0.9. My doctor laughed at me because I added up the 8 SUV and divided by 8 to get an average.

Where there was a low SUV change of 0.9 in PG, the uptake was low after No2  Lu177, and did not change much by No 4. This indicated that if an additional shot of Lu177 would not do much. But basically it could be years before Pca in my PG to becomes a threat.

But uptake changes in bones showed much bigger reduction factors, so where the change was 0.126 in a rib it meant that Pca in that rib has dramatically been reduced by Lu177. So my averaging the figures does not give any single meaningful figure to explain the Pca reduction that has occurred. I get on well with my doc who is looking after me at Theranostics Australia and overall, we have agreed about all things, and one thing is now clear, I have had an overall response that was pretty good, and probably worth every cent of the $40,000 it cost me.

The scan report goes on to say all mets in lymph nodes are gone, and a long paragraph tells me where there is no Pca, and no signs of abnormality where it would be expected to be if Pca was active, and concludes "there is a marked improvement with normalisation and reduction in areas of previously demonstrated intense activity in the skeleton" 

OK. I don't mind reading this sort of message from a radiologist!

 

At my last Skype appointment with the doc yesterday, he suggested there was no need to have another 5th Lu177 shot unless the Psa rapidly rose again. But if Psa did rise, maybe I'd have to have another PsMa scan and then a decision would be made or maybe a shot of Ac225 which TA can do if needed. It seems the doc thought just the one would be needed, to do the small amount of work that perhaps the Lu177has not achieved. But its early days so far, and Psa is trending down. I was put onto Xtandi ( enzalutamide ) after my 3rd Lu177, when Psa was 5, and maybe it will continue to help the effect of Lu177. There's a trial of Lu177 + enzalutamide going on at St Vincents in Sydney, so it will be interesting to see results because I've effectively had a bit of that trial idea applied to me. Often trials are done to verify what some doctors have found that patients on enzalutamide or arbiraterone get more benefit with Lu177 than having Lu177 without anything else. Now drugs such as abiraterone or enzalutamide have effects on Pca synthesis until the Pca works out a way to get past these hurdles. But its not entirely known yet if these drugs have a Pca cell killing effect at time goes by after the Lu177 has damaged the Pca cells. 

 

There is a chance that I have some mutated Pca that may "take off" in soft tissues or bones which does not show PsMa avidity. But none has been seen so far in scans, but if that happens my doc would steer me to have biopsy of such bone or other mets and then have DNA analysed which is a new idea and then I'd be given the drug most likely to hold that cancer down. This will not be cheap, and certainly not available in any public hospital.

There has been talk about use of Lu177 in Canberra where I live and where population is now 440,000, and with many men my age who are getting Pca. But from what little heard from radiologist operating the machine for me he said that maybe Pbs would have to cover the cost before demand increased enough to make Lu177 available here.

 

I did not discuss Ra223 with my doc, maybe it could be a good idea, but I guess that where there was enough lowish PsMa avidity that Ac225 might be more effective. 

I am continuing enzalutamide for at least another 3 months. I began taking the 4 pills after dinner to see if sleeping was easier than if I took the pills in the morning. I have pain problems with a right hip that are continuing and I am not cycling very far these days, and walking leads to night pain and my doc says that the original 2010 EBRT to PG may have hastened the degeneration of cartilage in hips hence part of cartilage is worn out. Well, I could cycle 200km a week with worn out cartilages in my knees right up the date when I hade both knee joints replaced. Walking was a pain.

Now I also had salvation radiation to PG with IMRT by Calypso at Epworth in 2016. It was 31Grey added to original 70Grey in 2010. 

Now this was applied with X-ray beams through the PG but used 4 different beam directions to original EBRT so no additional damage occurred to hip joints. But the total RT to the plane in which TR was applied was increased and nobody really knows what long term effects could have been to other soft tissues, ie, muscles and ligaments in beam entry-exit pathways. I could understand the reluctance of any doc to operate to fix something because of haemorrhage risk from radiation affected tissue. I hope you all can see the risks of long term side effects from beam radiation.

The PsMa scans showed that the results of salvation IMRT were minimal, and the Psa went lower mainly because I was started on Cosadex in addition to ADT just before the IMRT began. I was told the gel pad to protect my rectum from the IMRT would prevent rectum dysfunction but I still had 2 months of bad radiation colitis after that IMRT. At least I didn't get a fistula, which can occur where too much EBRT is used.

 

Last week I conferred with the hip&knee doc who did my knees in early 2017, and he really had trouble reading scans and X-rays, and I learned he's to retire in 6 months, and he really didn't want me on a waiting list for a hip. So I'll get a second opinion from a doc who tells me all about each sentence on the MR1 and X-ray report. My problem may not be from arthritis inside the hip joint. If you were getting a house built, would you not need a builder who could read a plan?

So, it ain't over yet. But things are looking up as they say.

I wish you all a very happy winter and don't let the cold temperatures get you down,

Patrick Turner. 

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Great to hear your good news.  Seems as though you might have it on the ropes for now, with good prospect of an almost complete cure.  Your description is excellent, and has given me hope for the future.  

I am currently weaning myself off dexamathazone post radiation on my head.  I have started to recover from the radiation and dex, but it is going to be a slow process. Now I have to rebuild my leg muscle strength before the next step, which is looking like Lu177 towards the end of July.

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Hi Patrick..... thanks for your informative, great news. I am a member of a Facebook group of Aussie partners of men with PC. Two member's partners are on Lutetium-177 trials. One of the guys is my hubby, who has his first infusion last Tuesday. The other guy had his 2nd infusion last Wednesday. I'm so pleased that you've had such a great result. If everyone did, it would be amazing. Would you be OK with me sharing the details you have mentioned? Obviously there's be no name or pointers as to who you are. I also understand if you'd rather I didn't. Cheers...... Roz Brown

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Hi Patrick,

 

Very happy to read of your successes and thank you for sharing the information.  I’m currently 1 round into Provenge treatment and haven’t started Enzalutamide or Abiraterone yet.  Lots of things to consider as the optimum sequencing path is very hard to determine.

Cam

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Great report, Patrick - full of good news, optimism and helpful detail.

 

The ENZA-P (Lu + enza) Phase 3 trial at St Vincents in Sydney will be very interesting: it's based on some good science, so your parallel experience might well be heading in the right direction.

 

Best wishes,

 

Alan   

 

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  • 2 weeks later...

Hi to all,

I have just up-loaded the updated story I have about Lu177 to my website at

http://www.turneraudio.com.au/Patrick-other-concerns.html

This includes my Psa graph and effect of Lu177.

So far, so good with my Pca, but a right hip is giving more trouble, so now taking 1 x Voltaren 50 and a Panadol Extra with small amount of codeine for pain relief, and now am getting second opinion about having hip joint replaced, or having less invasive arthroscopy.

The first orthopedic doc did both my knees in Feb 2017, and that allowed pain free walking, and slightly faster speed on bike at 6 months later, which surprised a few of the group I used to ride with 5 years before.

Anyway, this doc offered only hip joint, and didn't answer all questions, and seemed to have trouble reading the scans on the PC screen. I'd used crutches to prevent pain to get from car park to his office.

He said come back in 6 months when you have pain and I'll put you on wait list, which has to be kept short for political reasons. HUH? I wondered. I went away not much impressed, but at least he thought a hip joint  is feasible because Pca is "under control" .

Later, I found out this dear old doc is retiring in 6 months, so it seems he would not be the one who would do my hip.

So I've booked in for an appointment with another ortho doc in same otho department, and he's younger, and I spoke to a man who has just been done, all went very well. This doc offers public or private ops, and it already looks a better option without talking to him, which will be soon. If I am put on wait list for public, I might have to wait 9 months and all is 100% free on Medicare, but if I go "private" I pay the cost less Medicare rebate which I can afford, and I might get it done without waiting 9mths so the time between now and getting back on bike is shorter, and best for my health that will suffer if I don't exercise. He may do arthroscopy but he has to talk to me and look at scans when I see him, and in meantime, Psa is probably still going lower, so I have the window to fix a hip. I'll need the best mobility I can get.

I suspect my hip condition could be result of having standard 70Grey EBRT in 2010 for PG. The horizontal beams go through each hip. Then I had 31Grey salvation to PG in 2016, and beams were in same vertical plane at original EBRT, but beam directions were not same, to avoid more RT to rectum, bladder and hips.

I recently had another 20Grey to hip joint area containing 2 Pca mets to hurry up their demise with Lu177.

So the total RT I have had in that plane through right hip is a bit highish so whatever a surgeon does can be difficult because he will be cutting into radiated soft tissues which tend to take a long time to heal, and there is a big risk of bleeding. The radiation doc giving 20Grey said I'd be fine and that his hospital often does hips for ppl in my situation. 

I can only hope that I have not had too much RT to prevent any kind of surgical fix. 

Many would have died by now, nearly 10 years after primary treatment and with aggressive Pca, Gleason 9, stage 4, etc, but here I am, still alive, living independently.   

Time is the Great Dismantler, but with help from some fine doctors I have delayed the dismantling process.

I have met men with both knees and hips replaced, and one who had 3 revisions, so 7 ops.

Its a very nice sunny but cool day now with no wind.

Splendid for a cycle ride, but not today.

I'll have lunch soon, read papers, catch upon how mad this world is, and how wonderful.

Keep well if its possible,

Patrick Turner.  

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