Whew, just completed 28 RT session. Finally got my mets zapped. Been wanting to do that as it seems to be a treatment consistent with men here having long remissions. 3 sessions each of SABR to 3rd rib, 6th rib and iliac bone mets. 28 sessions IMRT to para-aortic lymph node string. That’s all that shows on GA68 PSMA PET/CT scan. Hoping Dr. Phuoc Tran’s (John Hopkins) colonization theory of mPCa spread holds water and with prostate killed 18 months ago (IMRT) the are no more supply depots left to support cancer cells remaining in the tissue and bloodstream.
After nearly 2 months in Houston will start driving back to Wisconsin tomorrow!
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6357axbz
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Well of course there is still cancer in reservoirs throughout your body. But the hope is that it will delay progression. No one knows. I hope it does. Important not to withhold ADT.
Right now Eligard and abiraterone acetate. Will do a “re-staging” (whatever that means) with Dr. Efstanthiou in 3 months. No idea at this point what she’ll want to do.
I was diagnosed 2009, and had EBRT+ADT because PG was inoperable.
In 2016, the first 2 of many mets showed up in PsMa Ga68 scans.
I had more IMRT tp PG, then Cosadex added to ADT, then when Psa rose again I had Zytiga and Psa went down then up, and Met numbers increased.
Chemo failed by October 2018, and I had 4 x Lu177 shots in 2019, and by August 2019, no soft tissue mets were seen in scans, only bone mets. Psa went to 0.32, but by July this year, Psa was back to 30, so I had 5th Lu177, and Psa went to 8.7 before the 6th shot Lu177 on 2 October. Now we wait and see, but next and 8th PsMa Ga68 scan is 4 November and if the still no soft tissue mets, then perhaps indeed they all have have been killed by Lu77, because that have had a long time when any could have grown big enough to be seen in scans, but they have not appeared yet.
Bone mets are a worry for me and we just have no clue at all how effective the Lu177 has been to disable the few bone mets seen last July, which were enough to make Psa of 30.
I cannot ever assume that I can zap every single met I may have. I do not know if I have thousands of mets, all smaller than the size of a small pin-head, and unable to be seen by any scan, and maybe untreatable while so small. While so small, they don't affect my health which is very good at age 73. But from little things, big things grow.
The only time any man could say he has remission from Pca after a long history of various treatments is to have no rise in Psa and not have any Pca appear in PsMa or FDG PET scan or any other scan after10 years of no treatment at all, and to get off taking ADT drugs, and maybe having Testosterone injections if testicles fail to restart making Testosterone.
My balls are probably permanently damaged by having had ADT for 10 last years, and to allow Testosterone to go high now would be a huge risk because it may make whatever tiny mets I may well still have grow real fast.
My fight is not over yet, and I am not sure what happens after I have had the safe maximum number of Lu177 shots. Maybe I can have Ra223. It depends on Psa results, and if that number just goes to below 0.01, then I could be OK for a long time. I'll believe it when I see it. If I am healthy enough I may have more Lu177 when I need it. We need scan results to guide us. They are only a guide; there could be many small hidden mets, nobody knows right now.
I live in small city Canberra which is about 300km south west of big city Sydney on Australian East coast. Theranostics Australia is a company which set up in Perth in 2015 about 5,000km to west coast, but they have had clinics in Sydney since 2016, and in Brisbane. This all has evolved last 5 years, and in time so I didn't have to travel overseas. So all I have to do to get Lu177 is travel 300km to Sydney by low cost but slow train to get Lu177 treatment as good as anywhere in the world. There have been some Americans who have travelled from USA to get Lu177 here.
Lu177 is not fully approved here or in USA, but having had good phase-II trials here the Govt allows men who have had chemo fail to get Lu177. TA have given Lu177 to maybe 900 men so far, and claim a 70% success rate which I guess is defined as reduction of mets by more than 50%. The time between when my Psa was 25 before Lu177 and when it went to nadir of 0.32 was 1 year, but then in 6 months Psa was back to 25. So I basically stopped Psa getting worse for 18 months.
Lu177 seems to have eliminated all my Pca at PG and soft tissue lymph-node mets.
But 4 doses were not enough to kill all bone mets, so some have grown back up and are responsible for rise in Psa. The biggest bone mets were pea sized in pelvis and femur.
I have had 2 more doses of Lu177 on 24 July and 2 October this year, and Psa has gone from 30 before to 8.7 before last 2 October, and I hope trend is continuing.
FDG PET scan and PsMa scans last July showed all my Pca makes PsMa so Lu177 should be effective for all my Pca. No mutated form of Pca has ben found yet. I have the simple slow growing Pca, first diagnosed in 2009.
I have next blood tests next week, so will know at 1 month after last Lu177, and I will have 8th PsMa scan on 4 November, and see a doctor on 13 November to review progress. All the scans needed for Lu177 treatment are available here in Canberra, but I talk to TA doc in Sydney via ZOOM. But there is another lot of blood tests on 23 November, and maybe I get another dose of Lu177 if the doc thinks I'll survive side effects OK and that it will do some good. There is often little benefit to get more Lu177 if the Psa has gone > 2.0 and very little Pca is seen in scans. It is better to wait awhile to see if what Pca is left after 6 x Lu177 shots will grow up again, or just die, giving me a long time before Psa rises fast again. Research at Peter Mac Hospital in Melbourne which specializes in cancers indicates I could have 3 series of Lu177 treatments spread apart by about 18 months and thus get up to 5 years of extra life that chemo would not have ever given me.
Each PsMa scan costs me usd $500, with Medicare paying for a much larger hidden amount. Each Lu177 shot costs me usd $6,700, and I get no funding by Medicare, so treatment so far has cost me usd $42,000.
But I am able to stay alive and cycle 200kn a week at 73yo. So my QOL is good, no cancer pains, and I can remain independent and living in my house without a wife or any family and mow lawns and clip hedges, and do some craft work in shed. So docs think I am doing very well compared to others who were found to not respond to Lu177 very well and often because of unknown presence of Pca that could not respond to Lu177 treatment. I met on man last year who had aches in his hips due to pelvic and femur mets and he had Psa 200, and Lu177 did not reduce Psa, and he later died.
My local oncologist wanted to give me a bit more chemo, only Cabazitaxel instead of Docetaxel which failed, but both are based on taxanes, and I read that any benefits from Caba are only marginal compared to Docet, which did not work at all for me because my Psa just went up from 12 before to 50 after 5 doses, so I quit chemo in October 2018. But then Psa went from 50 to 25 in month before I began Lu177 in November 2018. Nobody knew why.
Psa staid at 25 after first Lu177, then fell to 17 after second, so it was slow to act at first. But I had aggressive cell Pca, and it resisted attempts to kill it. But after 4th Lu177, Psa was going down real nicely, and continued for 6 months, until it decided to rise again.
But after third Lu177 dose in 2019 I was given Xtandi, which was said to boost action of Lu177 by increasing PsMa at Pca mets. it probably worked to increase PsMa but also cause Testosterone blocking in mets which slows their growth, hence I had Psa nadir of 0.32 last November. But Xtandi would have stopped working by now to interfere with hormone action in Pca, but may be increasing PsMa, so docs have kept me on Xtandi to make Lu177 more effective.
For last 2 doses of Lu177 I was given Veyonda for 2 days before and 8 days after each Lu177 dose. I guess that would explain why I have seen good drop in Psa, but the scans next November should show the real story of what is happening, or not happening.
Its a wet spring Saturday here, and more rain tomorrow maybe, so maybe no cycle ride this weekend. I have plenty to do though.
Congratulations on completing this program. Now the waiting and monitoring begin. It can take a long time. Will you stop ADT at some point 18-24 mo), if nothing new appears?
Have yet to discuss with my MO. I’m for staying on ADT for a long time as long as toxicity remains in check. I’m pretty used to the SEs and not much bothered by them. I think of adding a systemic treatment like LU177 or Docetaxel but right now my MO wants to wait for a few months after radiation to see where we go.
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