Here is a personal update about my case. I have been doing follow up PSMA PET scans of pelvic lymph nodes in left pelvis since that region was treated with EBRT in late 2019. PSA dropped from 0.28 to 0.14 following treatment and drifted lower but never undetectable. I have been off of ADT and using cyclic high dose testosterone for sarcopenia: 2 months high T then one month off. PSA has behaved. goes up to 0.17 on T and drops back near 0.11 when off it.
Then I had another PSMA PET scan this month (Pylarify) which showed progression: two new 1 cm lymph nodes, one in the right pelvis and one in the abdomen at celiac plexus. So now I am "officially" metastatic, yet still HS.
Two ways to go: SBRT targeting and blasting the two new nodes with high probability of resolving them. But a 65% probability of recurrence in other nearby sites within 2 years.
Alternative could be Lu-177-PSMA treatments which do provide some benefit for some time but often do not completely clear the larger metastatic nodes. Again, high rate of recurrence.
Tonight I had a video consult with Dr. Nat Lenzo of GenesisCare in Australia. He said they have a new program and trial underway for combining both SBRT and Lutetium in oligometastatic cases. The SBRT kills the identified cancerous nodes quite effectively. Then 4 weeks later they use Lu to mop up and treat micro-metastatic foci. (Sequence can also be reversed.)
Furthermore, they are using a different ligand for PSMA binding that is an antibody called J5-91. It binds much stronger to the PSMA on cancer cells. So the dosage of radiation can be much lower, 1.5 to 2.0 GBq instead of the 7.4 to 8 with other ligands. And they only need to do 2 injections two weeks apart, rather than the 4 to 6 at longer intervals requiring more trips. There is lower salivary and renal toxicity with J5-91 but more significant bone marrow depression which is temporary but may require transfusions in some. (25%) and 5-10% platelets.
So I am getting prepped and simulated for SBRT to the nodes next month. Then 4 weeks after completing the 5 treatments fly to Perth for the first J5-91 injection. Be a tourist in Australia for two weeks and get the second injection before flying home. And he wants me off of ADT from the start of the SBRT until all is completed. Oh well, have to give up the Orgovyx for my "off" cycle early.
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MateoBeach
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I hadn't seen this pilot. Thank you for sharing (of interest only as no longer oligometastatic). Great to see things moving with trials like this and fingers crossed for the 6 participants. I would definitely have signed up early last year!
That is a good fit however it says β not yet recruitingβ. Thanks for the link and will keep ir in mind. Though the J591 offers two treatments only, two weeks apart. So could do it in one extended trip to Australia.
Thanks very much for this up-to-date info re Lu 177 at Genesis Care. Very helpful. Hope you enjoy OZ while you're here. Besides Perth, recommend wines in Margaret River, whales, dolphins, forests and caves in SW corner, Rottnest Island for quokkas etc. and of course beautiful beaches (cold sea though) brrr. Best of luck with your treatment. G&J
When my HIFU failed In Dec 2020 and my requested PSMA PET scan showed mets at T1 and third rib I researched Lu-177 and SBRT for my new oligometastatic status. I did mention having both to my main RO but the UK are miles behind with Lutetium developments so ended up trying the SBRT as it was available with its 30% chance of a cure. I wasn't in the 30% although SBRT was showing to have positively impacted those two when 6 'new starter mets' popped up, so wish I had had 'mop up' Lutecium straight away (and some chemo, now I've stopped running from it!).
Does the trial have a number/ name?
I definitely want to follow this one. Thank you for the update and good luck with both treatments.
Dr. Nat Lenzo said I could not be in the trial but will be treated βper protocolβ. Also less expensive because of the lower Lu177 doses used with J591. Havenβt been given specific price yet, just setting it up now.
Was planning to at that time. However PSMA PET showed only two small LNs in the pelvis and nothing elsewhere. So opted for pelvic RT with short term ADT back then. Unfortunately my RO felt treating both sides of the pelvic fields was unnecessary, despite my doubts on that point. Glad this more refined approach is now available now that it has recurred on the other side of pelvis and in abdomen. Certain that there are other micro mets which this may get after.
Best wishes on your Australian adventure, keep us posted.
You're an invaluable contributor. Good luck in your treatment and I'm sure you'll keep us posted. I've read about anecdotal cases of using SBRT in a whack a mole situation can go on a long time for some, without ADT. Others, not so good.
Oils, yes. Keeping that in my pocket now as my cancer is growing slowly. This seems to offer more potential benefit now. Then I still have the Jevtana card to play.
I have lots of concerns about Lutetium PSMA therapy. One of them is as I stated in my profile is potential quick repopulation with non psma avid cancer. Plus it has lot of negativ side effects. I would personally try again (why you are still hopefully hormone sensitive) doxycycline plus paralel to it Provange. I know that you had both. Maybe that is actually good as you know what will you expect regarding side effects.
Thank you. This is different situation and approach. I have only two positive nodes, each about 1 mm volume. They will be treated by SBRT. Treatments 4 and 6 weeks later with Lu-J591 are to go after remaining unseen micro mets where repopulation is less of a factor. Appreciate your input.
Which scan did you use to pickup a 1 mm mets? I always fought that it is not possible. It should be at least 4 mm diameter in order.to see it on the scan? What is the institution which is treating you?
Thanks for pointing this out. A typo. I meant 1ml volume, same as 1 cc., not linear length of 1mm. Nodes are about 1.0 by 0.9 cm in length and width. A cube 1cm x 1 cm x 1 cm is by definition 1 cc (cubic centimeter) in volume = 1 milliliter, ml. In the ballpark of size of mine. Small but much larger than 1 mm dimensions which would be around .001 ml, 1000 times smaller! Good pickup, Seasid.
Thanks very much for this post. Very interesting. Good luck with your treatment. I am still oligometastatic with lymph node involvement but my physiology does not suit full pelvic node radiation. I have hit a couple of nodes with CyberKnife and am taking 6 months bicalutamide. I am 3 months in and PSA is 0.02. I expect it to go back up. If it stays in lymph node area I was thinking about LU177 combined with Lupron. But what about a targeted radiotherapy + LU 177 and Lupron combo. I think not tested and there will be no data but maybe a combo at the relatively early advanced stages might work or at least give some remission. Would be interested in thoughts on this.
Good thoughts and align with my own and my docs support this. Note that it can take years after effective RT to reach true PSA nadir in slow growing cases. Perhaps you are in that category too.
You are searching wide and far, and the SBRT + Lu 177/J5-91 combo seems a most interesting way to go. Why go for only one when you find a place to do both. I wish you all the best on your long journey.
All trials have their own criteria for inclusion and exclusion. For this protocol They want me to not be on ADT and are OK with supplemental testosterone to maximize PSMA expression while HSPC
Wow! Bravo , Then that is very good for you . May you push it away for good! We are praying for you to be healed .May God be with you and your sweet wife on this journey to better health . πβ€οΈβ€οΈβ€οΈ
Don't know who you talked with in Australia but Nat Lenzo expressed to me that he thinks both in combination is better than either alone. While I could not get into Australia at the time of communication I ended up getting LU177/Ac225 in Heidelberg followed by fractioned radiation at home.
Agree with Dr. Nat Lenzo's plan...SBRT is more effective in wiping out the larger nodes..while Lu177 psma is always good in small-volume disease...so this combination should give good results. We have tried Combiert (Combined internal and external RT) in other tumours with a curative intent like in paragangliomas, meningiomas, and hepatocellular carcinoma and it works beautifully. I would also agree with Dr. Nat Lenzo's plan of giving just 2 doses of Lu177 rather than the standard 3 - 4 doses. The intent should be to administer at least 10 Gy to the metastatic sites by internal dosimetry.
Thank you for your perspective on this, Dr. Ishita Sen. I greatly appreciate it. Do you also use 177-Lu-J591 in such settings in your practice in Dehli? If so, at what GBq? Paul π
Could possibly post the contact numbers for Dt Nat Lenzo ? Like the idea of SBRT prior to Lu 177 . Just spoke to Dr Kwon and heβs not sure when Lu 177 program will start but heβs cautious about doing SBRT prior because may cause anemic response and jeopardize the Lu 177 treatments . Any thoughts to go with the contact information would be appreciated.
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