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Barree

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Patrick Turner

The "rights" to Lu177 and Ac225 are perhaps unclear to most of us because who would have the right to stop an organisation fron sourcing Lutetium or Actinium however they see fit? But I am naive about such commercial / patent rights, but I could guess that if a company purchased the rights to hydrogen oxide, they could stop a nation using any of this to treat results of severe H2O deprivation syndrome, because they'd have a patent on H2O use in 10,001 different ways according to their 3,484,569 page patent document.

We might wish the Govt send the Army around to re-take H20 rights, and escort the company execs to a large canoe at Bondi, and tell the buggers to paddle their way to a future somewhere outside Oz.

Of course the pollies and lawyers would try to intervene, often because they have invested in such companies we all might loathe. 

 

Meanwhile, I am to begin Lu177 with Dr Lenzo on 9 November, soon, and maybe halt the Pca progress that has not slowed with 5 rounds of Docetaxel.

I had interesting discussion with the Dr L who said the Germans have been using Lu177 for longer than anyone else, and probably know the most about it, and the trend is now to use it earlier rather than later.

He said I was not too early. Side effects could be less than continued chemo which so far has allowed my Psa to treble from 12 after 13weeks.

He said Ac225 is maybe more effective, but its side effects of dry mouth and dry eyes are far worse than the Lu177.

I might have been in TheraP trial, but you get assigned to either Lu177 or Cabazitaxel by a computer app.

So if a man wanted Lu177 if he thought Cabazitaxel would work no better than Docetaxel, he could not get Lu177. Dr L said the trial probably suits those who could not pay for Lu177, so they'd take anything they could get that was free.

I can afford the Lu177, and have chosen it because from what I have read about Cabazitaxel it is not much better than Docetaxel.

I could get Cabazitaxel after the Lu177 if and when that fails. Dr L has seen my scans that show my Pca has PsMa avidity in all the mets and in original PG which was not removed in 2009 because too much Pca had begun to enclose it. Remarkably, Pca did not spread to nearby organs or distant organs, but is now partying in my bones.

I am hoping to send Lady Lutetia to gate crash the parties, and I'llsee what happens soon enough, amd maybe, I can buy myself a present for Christmas - a lower Psa.

 

Another friend is mulling over results of DNA analysis of Pca molecules from his blood. From this, the best chemo is supposed to be able to be chosen. He has taken 3 years to get to where chemo failed and I have taken 9 years, and maybe his Pca has mutated faster than mine. It is such an uncertian science, trying to stop Pca.

Nobody can be sure about anything. I have this very old tumour at my PG that maybe started in 2004 when my Psa was only 3, and low Gleason score. Psa went to over 5 in 2009, I had it examined, then Gleason score was 9, agressive cells, young man's cancer, and I feared the worst. ADT held it down for many years. But by now, there must be a large number of mutations. Nobody knows. So I just gotta try things. There's enough evidence I might do OK with Lu177, so its worth a try without waiting to get DNA analysis done on blood borne Pca molecules.

Dr L said it is possible Pca can be re-sensitized to abiraterone or enzalutamide by chemo or Lu177, and that might be welcome but my friend took enzalutamide after many chemos that initially pulled Psa from 40 to 2 in 3 chemos but then it went up, and it seems the enzalutamide is doing SFA, and here we go again, the general expectation of a doctor just didn't happen according to theory. 

But I cycled every day since the last chemo shot 11 days ago, and did a total of 200km. Today I managed 52km, and I am fine right now, but about average 2kph slower than before chemo. Dr L does not want me to have Chemo 6, to allow my body to recover a bit before Lu177 No1.

I shall relish that.

I thought Dr Lenzo to be a mild mannered gentleman, cautiously optimistic, and I could see that he and i will get on OK, regardless of the outcome. Nothing ventured nothing gained they say. I cannot take the dough with me when I die, so I should spend a bit before I go, and Dr L is lucky I don't fancy a Maserati, but would prefer a bicycle, and that I don't fancy a World Cruise, but prefer to cycle across town for sandwich.

So. Spring weather is glorious, but we will soon all be whingeing about an early hot summer ? 

Meanwhile, life is quite good. 

Patrick Turner. 

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DavidW

I am having my 3rd Lutetium Nov 8th. I get no noticeable side effects but PSA is down to 2 after 2nd dose so next one should drive it  to virtually nil. Cabazitaxel also got me to negligible PSA but has left me 12 moths later to virtually disabled with severe Neuropathy. Cabazitaxel also had me urinating blood, including passing clots, dry reaching and generally feeling ill and exhausted . I had transfusions 6 times and a few nights in hospital with low blood pressure.  Family have assisted with financing Lutetium So I hope the last dose planned January doesn't suddenly cost a lot more with the sale of the technology.

David W

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