So I thought I would also get my eight lymph node mets treated if it worked so well for tango65. I got the first Lu177 cycle beginning of this year in Bad Berka and now they made a PSMA PET/CT to see the results. The result was a complete remission! No more mets detectable with a PSMA PET/CT. So they will not do a second cycle now.
I did an adjuvant Casodex monotherapy since end of last year to increase the PSMA expression and also to support this type of salvage radiation with ADT.
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GP24
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For bone mets they often use the Lu177+Act225 mix which causes more side effects. I know a patient with lots of bone mets and his PSA value went down a lot after this combination treatment. However, he now has to continue with ADT since the mets were not cleared completely.
Congratulations!!! It seems that is very effective in lymph nodes metastases. I got a Ga68 PSMA last month with a PSA of 0.46 and it was completely negative.
Thank you tango65! I recall that you took bicalutamide till the middle of 2018. Why did you stop with it and what are your current plans regarding ADT?
That is such wonderful news! Long may the remission last!
Forgive me for saying this here in this post, but I am just wondering how it would have been for my husband, if we had gone ahead with the treatment at the beginning of 2017. We were about to do it when they found the liver mets. But maybe there were no liver mets when we decided to go for LU177, it was two months later that they were discovered. I guess I will never know.
I personally think there are two reasons for the excellent result:
one is that the Lu177 therapy was applied very early in the disease course when I had only very little systemic therapy before and was hormone-sensitive. It has been observed in South Africa that there is often an excellent response if the patients have not been treated before.
Also, pre-clinical research reports that the PSMA expression can be increased at the very beginning of an ADT therapy. This seems to be particularly the case with antiandrogens i.e. Xtandi and Bicalutamide. The higher the PSMA expression, the more ligands with Lu177 will attach to the prostate cancer cells and radiate them.
Since Paul had already had a Chemo, I would not expect a complete remission with the PSMA therapy.
Awesome results!! You are correct they are starting to do some mapping to determine why cancers respond better than others to this treatment as it may allow them to determine the best candidates more effectively.
What a coincidence. Yes my wife is here with me. Good looking blond. I definitely married up. I’m early in my treatment so I’m hoping it will be effective as you suggested.
You did not mention much about your disease in this forum. So let me make some general remarks. I had a friend with Gleason 9 and bone and lymph node mets. He decided to rely solely on the PSMA treatment. The mets vanished from the PSMA PET/CT after two Lu177 cycles but he could not clear the prostate. I think there is too much tumor in the prostate for a Lu177 treatment so you have to decide to have that treated some other way. I would always try to treat the primary to avoid the tumor to continue to spread from the prostate. Then I would continue with some sort of ADT. It is frustrating if new mets appear already about six months after you cleared all visible lesions. So the PSMA therapy should be part of a multimodal treatment strategy.
That is absolutely great GP24! And gyancey, if those are your sons you must have married a very tall good looking blond. Did you mean by married up, looking up?
Ha! monte1111 that was priceless! Speaking of Spouses let’s all cheer for all the wives,partners girlfriends who are right by our side during this ordeal. It’s easy to forget how tough this is on them as well.
Diagnosed June 2018. Gleeson 9 with bone and lymph mets. Currently on Lupron/Zytiga. ADT treatment has been effective with 0 PSA. As far as treating primary tumor what are the options? RP? Seems a bit discouraging if LU-177 won’t effect primary tumor.
November 2018 here, Gleeson 9 with bone mets. also on Luprong and Zytiga, PSA has gone from 2.75, to .6. to .3. so headed in the right direction. I want to consider LU-177 at some point, but have been under the impression that it is only warranted when ADT starts to fail. The trials I have seen require that anyway. I will be following you closely!
Hi RayF. I had a similar experience in that I could not qualify for LU-177 in any clinical trial in the US because I was early stage and had not failed ADT therapy. I discovered Dr. Richard Baum in Bad Berka Germany who is willing to treat me. I’m here right now! The experience has been good and I’m hopeful for the first time in awhile.
It does effect the primary tumor but it may clear e.g. only 60 to 70% of it. So you will have to make a plan to clear the rest. Could be RP or radiation, perhaps Cyberknife if you find an RO that treats a Gleason 9 with Cyberknife. Or HDR brachytherapy.
Lu 177 will not clean all the areas of the tumor having a low Gleason score. I think this happens because low Gleason cancer have a low PSMA expression.
Sounds great! Lu is on my radar when Zytiga ( Abiraterone) stops working. How much is the private treatment cost. I have seen numbers of around AUS$40,000 in Australia and Euros 10000 in Germany.
What were your meds prior to treatment and what Mets did u have?
One round of treatment in Germany was $13,000. Im on ADT-Lupron/Zytiga. Mets were in pelvic lymph nodes, spine and ribs. Mets are now either gone or greatly diminished. Prostate is still affected. going back for round two in June.
Thanks a lot!!I have been on Zytiga for 15 months now. What was your PSA when u headed to Germany and what PSA had it risen from. Did you have any pain from your Mets? And did scans show any Mets growing or more occurring?
PSA has been .01 since start of ADT therapy. It has stayed there since starting in August 2018. No pain from mets. PSMA scan the day before LU-177 treatment last week showed some mets had disappeared and some new ones had formed. I thought that was very interesting.
Good catch GP24. I was referring to the impact to my PSA number when I said it was working. Im not sure that is a good definition of success as it relates to ADT. In fact my Doc in Germany said it's not. I had one scan done at UCLA in August of 2018 and the new one was last week in Bad Berka.
I would assume that the interpretation in UCLA was very different from Bad Berka. They interpreted some spots as mets which were not regarded as mets in Bad Berka. On the other hand in Bad Berka they declared some spots as mets which had not been seen as mets at UCLA.
In my case Prof. Baum found a remote lymph node met which had shown up in two PSMA scans before but was regarded as false positive by the interpreting RO. He assumed I would have affected lymph node mets in the pelvis only. After the Lu177 treatment this met was gone so it was prostate cancer.
If you get the next PSMA scan after the treatment at Bad Berka, you will have the same RO interpreting the results and that is the best to control the result of the treatment.
Sorry for the delay in responding. Was in Mexico and had spotty cell service. Much more relaxing trip than Germany!!
1. My Oncologist in the US wanted me to ask about stopping Abiraterone and was told by the doc in Bad Berka to NOT stop ADT.
Still on Lupron/Zytigia
2. Had PSMA GA scan the day before treatment. Had a Scan of the salivary glands right before treatment. Had PET/CT scan two days after treatment. There was some concern about spread to liver so had an MRI (liver is fine, false positive from my first scan at UCLA. Had ultrasound the day I was discharged. Initial impressions from post treatment scans seem to point to remission in lymph node and bone mets. Primary tumor is still showing signs of life if you will.
3. Chose Bad Berka because it was the only clinic in Germany that would accept me for treatment as I have not yet failed my current treatment. Didn't really do to much research on Australia. Seems like a very different approach in Australia as it is done outpatient from what I understand.
4. Made contact thru their website and it took approximately 5 months from contact to treatment.
I hope this helps! I am a bit of a rookie when it comes to this stuff but I really feel the science is sound behind PSMA-LU 177 treatment. Seems like the ACT225 is very promising and I read somewhere that the sourcing of ACT255 is impoving.
No apologies required for vacationing. I have increased my family vacationing 3 fold since diagnosis including Hawaii, Europe and a cruise. We also love Mexico!
2 more questions
1. You had just Lu177 only? Could you have added Act225?
2. The primary tumour in the prostate is still active. Did you ask about another Lu177 treatment to potentially clear the prostate? Miguel from the UK recently did Lu177 at Heidelberg and is planning a second treatment in June.
1. yes I only had Lu177. I assume that was because I am early in my treatment. There was a guy there who was having both but he is much farther along in his treatment.
2. I am scheduled for another round in early June. I think I will have one more after that.
I just wrote a post tItled PROACTIVE. it will update you on my progression since dx Nov 2017.
I was looking to see if u had done your second treatment in Bad Birka and see that u have and briefly went to 0.025 a few months ago, not sure why? I did have a tumour growing st C3 which I thought was responsible for the minor PSA rise but PSA was back down to 0.01 before I had stereoctic radiation.
My PSA is down to < 0.008 as of a few days ago.
My post asks what should I do next??
I did do an initial contact of Bad Birka but thought I would wait until I had done stereotactic radiation on my neck, which happened mid June.
You seem to be the ONLY one doing LU177 with a very low PSA. I would have to go to LA, or Germany, Oz etc to have a PSMA SCAN to see if so am PSMA avid but with low PSMA will it show anything?? as we know we cannot join VISION trial unless we have done some chemo and have a PSA of at least 2.
U appear to have had a bunch of Mets. With low PSA they I view them as just hibernating’ and when the cells become resistant to Zytiga, they will start growing again?!
I think the Lu177 treatment will not replace all the other available treatments for PCa. I had it done when my RO refused any further Cyberknife radiation. So I pulled the Lu177 treatment out of my sleeve when I was told to do ADT for the rest of my life.
Therefore I would follow your third alternative (in the opposite sequence though) :
"3. Stereotactically radiate spine and pelvic tumours even though currently stable. Radiate prostate bed."
Radiating the prostate bed is now recommended in the NCCN guidelines based on the result of a STAMPEDE trial. This will debulk most of the tumor and I think will result in a longer period until you become resistant to ADT. Getting that done should be no problem and the Lu177 treatment usually will not be able to clear all the tumor in the prostate bed. This is just too much tumor in one spot.
After that you can try to get an RO to radiate your mets with SBRT. This can turn out to be difficult if you have more than three mets. Most ROs are afraid new mets will appear just after the radiation. This should not be the case while ADT is working. If you cannot get your mets treated you can try the Lu177 treatment. But as I said, radiate the prostate bed before that.
Thanks GP24. VERY HELPFUL IN MY QUEST!! I was trying to piece together your history. One treatment of Lu177 cleared your lymph nodes. How did u clear your prostate? What meds are you currently taking and what PSA are u at and are u now met free?!
You suggest prostate bed radiation instead of RP. Is this to minimize side effects? Or because I have Mets outside the prostate, I can’t become cancer free. Some of those little prostate cancer cell buggers will be in hibernation outside of my prostate in the blood or in the bone Mets?!
From Gyancey his first Lu177 ( no added Ac225) cleared his bone Mets and apparently 30% of prostate. His second treatment in June I believe was to clear the prostate... awaiting results!!! EXCITING RESULTS.
I view myself similar to Gyancey, younger, chemo naive and willing to be treated outside the box as well as within the SIOC standard of care with Zytiga.
Have you got a link to the NCCN prostate bed radiation?
My MO suggested I consult with Germany... I can go that way but it’s outside of his SOC box that he has to follow.
I believe my RO mentioned I could have prostate bed radiation. He can’t radiate every met under SOC but if I am in pain I think I can get him to radiate anywhere up to the max dose allowed in the particular area.
I had my prostate bed treated four years ago and then had my lymph node mets radiated with Cyberknife. The last PSMA PET/CT after the Lu177 treatment showed no mets any more but this probably means that there are small ones left which will grow now and become visible. I recently stopped Bicalutamide and will see how things develop now.
The STAMPEDE trial used radiation and not surgery. Therefore the guidelines recommend radiation. Surgery will probably also work but that is experimental since the trial did not test that. Here is a link to this trial:
This way the treatment of the prostate bed would be payed by your health insurance and you would need fewer cycles of the expensive Lu177 treatment. Since it is a very new treatment I would avoid to have more cycles than needed because of possible side effects.
The Lu177 treatment is not the magic bullet for PCa. It works very well for a few patients (e.g. me), good for many and not sufficient for a few patients. Gyancey wrote: "4. Yes my PSMA scan showed clear spread to spine, ribs and pelvic lymph nodes. My second PSMA scan done in Bad Berka showed some mets had resolved but new mets had formed. This despite low PSA". Also, I just read in another forum that one patient started the Lu177 treatment with three bone mets and now has lots of bone mets after two cycles of Lu177. So the treatment did not work for him.
I stopped with Degarelix three years ago and have lowered the PSA value since then by radiating my lymph node mets with Cyberknife. Since I read Bicalutamide may increase the PSMA expression I started with Bicalutamide monotherapy last November as a neoadjuvant ADT if you will. I will continue with that for six months after the PSMA therapy. There is no evidence for that, I just do it as an adjuvant ADT after the PSMA radiation. Hope this helps.
They did a PSMA PET/CT, as I mentioned above, twelve weeks after the first cycle and saw a complete remission. I will observe my PSA value now and have another PSMA PET/CT if it rises.
I had read in the Internet that at Bad Berka they sometimes apply the PSMA therapy much earlier than other clinics. So I went there. It is a small team so it takes months from the first contact till you get the treatment. Here is the link:
My husband who is 76 and has lived with Adv. PC the last 10 yrs, has been through 44 sessions of radiation, on-going Lupron, Provenge, Zytiga, Xtandi and Docetaxel (which he had to stop two weeks ago after 6 infusions). He will be starting treatment with Lu PSMA 617 in two weeks. I have been following the group posts and am learning a great deal from you all but haven't seen much about Lu PSMA side effects in comparison to Docetaxel. We have been told by his onc that these side effects won't be as bad and have read all the literature about those which are most common. We are hoping to be able to take a much needed trip between the 1st and 2nd 6 week sessions. Is that naive of us? I would really appreciate your feedback if you have been through it.
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