Has it been tested in a castrate sensitive condition yet. If so have results been published ?
Can you arrange it privately if not ?
LU 177: Has it been tested in a... - Advanced Prostate...
LU 177
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Farn
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Have a look at the PSMAddition clinical trial
clinicaltrials.gov/ct2/show...
I was told it was coming to London at the Royal Marsden and UCLH but see they are still not listed. I had to start HT in November so couldn’t wait ( 45 days HT allowed)
I could not find anyone willing to treat me in the UK whilst hormone sensitive so had 3 x Lu-177 in Finland instead. It’s been costly but I didn’t want to risk this early treatment being successful and having missed the opportunity.
I started Degarelix ( monthly injection) on 25th November with PSA rapidly rising ( 17.6) and mets to the spine. Lu-177 on 10th December and every 4 weeks for 3 sessions. MO suggested I finish with 3 x Chemo. I have had 1 and PSA currently 0.25. Two more chemo bombs planned at 3 weekly intervals then a load of scans
I am written up for a new HT drug too but haven’t started yet. My London RO did stampede trial scans which allow me to have radiotherapy to the prostate still ( initial treatment was HIFU). She did SBRT to a rib and T1 spine when I was first diagnosed as ogliometastatic but said Lu-177 was not in her gift.
There is also a hormone sensitive trial in Holland called Bullsye.
Good Luck
Here’s the Bullseye link
clinicaltrials.gov/ct2/show...
I considered this when diagnosed as ogliometastatic but did the SBRT to the two mets instead, unfortunately that did not stop the spread.
The PSMAddition lead at UCLH is Gert Attard who rang and gave me a good hour of his time on the phone which was appreciated. He offered the Amplitudetrial
clinicaltrials.gov/ct2/show...
not PSMAddition and I have already been tested negative ( privately) for a germline defect so low chance I fit the profile plus it’s double blind so even if I have the defect 50% chance I wouldn’t get the drug. So I have gone with my unusual triple:
Degarelix
6 infusions ( 3 x Lu-177 / 3 Docetaxel)
Abi/ Enza/ Apa still to get added
So no idea what’s doing what but PSA headed in right direction and full set of comparative scans planned after chemo no 3 . Currently getting PSA tested every two weeks and consulting after each infusion as with Finland it’s a planned course but I get the impression unless bloods stay reasonable etc they stop and replan.
So far still asymptomatic, still working full time, still socialising and gym going but libido is low which is weird. Sex still possible with tablet and role play. Abi etc will probably end it completely I understand.
Good luck
Hi,
Have you done scans prior to starting Chemo?
For how long you are planing to stay on Abi/ Enza/ Apa after finishing Chemo?
Why you chose Docetaxel and not Jevtana?
Thank you.
I had scan after 3rd Lu-177:
11.2.2022 3rd Lu177-PSMA treatment. SPECT/CT scanning was performed from skull vertex to mid-thigh 24h after treatment injection. Injected dose was 7149 MBq. Previous treatment scans and 11/21 F-PSMA PET/CT was used for comparison. Very faint activity noted anymore Th1-5 region. No activity present in C2, C6 or Th9 vertebra, lumbar vertebra, sacrum, pelvis, left scapula or in ribs. Faint prostatic activity is noted as in previous study. There are no Lu-PSMA positive lymph nodes in upper body or in abdomen. No metastatic changes in lung or liver. Abdominal organs appear as in previous study. Conclusion: Further reduction of activity is noted in Lu-PSMA positive bone metastases. Faint prostatic activity appears similar. There are no new lesions
7.3.2022 DOCETAXEL 150 mg i.v. every 3 weeks up to 3 cycles. 28.3. 2nd and 19.4.2022 3rd DOCETAXEL. Then NaF- and PSMA-PET-CT control.
I was advised Docetaxel by both my MO s so didn’t discuss Jevtana tbh.
Re Abi/Enza/ Apa my London MO says hormones for rest of life or until something else becomes an option
Finland MO takes things one step at a time.
So prepared mentally for hormones for as long as but with a small hope of a better solution
Thank you!
It means that your last scan did not reflect effect of your 3rd Lu-177, hopefully your scans after Chemo will be free from anything detectable.
Let's hope that ADT is not for the rest of your life 🤞, I have very strong willpower, but I can't picture myself for the rest of my life on ADT (just can't justify it), of course my opinion can change.
I just went through 1st out of three 4-weekly Lu-177 in Austria, may consider follow it by 3 chemo and short period of ADT plus Nubeqa. Should be able to decide soon.
Good luck with your chosen path!
Good Luck to you as well. Yes my last scan was 24 hours after 3rd Lu-177 so hopefully things are improved following that one having time to work plus chemo number 1 getting on for two weeks ago.
I was very unhappy with chemo recommendation as that ( and HT) was what I wanted to avoid. However following consult I am fully committed that it is the right decision. Everyone says how PCa is heterogeneous and chemo is a proven killer so makes sense to me to add it in whilst I am fit enough and 3 cycles in not 6 cycles. Chemo 1 has been no problem ( I appreciate its cumulative).
HT is not fun at all and I tried everything to avoid it but with mets appears everywhere and PSA rising so rapidly in November 2021 I realised it was ‘needs must’ . There must be a better solution out there though!
All the best with the second infusion. I also had them every 4 weeks.
I just read your profile and wanted to mention supplements. My Finland MO recommended I came off all during Lu-177. Did Austria say the same?
He was particularly horrified to find I was taking zinc and selenium as there are clinical trials apparently showing not good for APC! Oops
My RO in Vienna said that any supplements are OK, except: selenium, folate (especially he stressed on folate), b-12 and vitamin C, rest are fine.
I'm taking quite a number of supplements, will see how it goes.
Currently on:
Turkey Tail
Chaga
Agaricus Blasei
Berberine
Red Rice Yeast
Curcumin
Resveratrol
Quercetin
Biobran
Magnesium
Low dose Aspirin
and few others. After blood test results prior to second Lu-177 infusion - I might adjust supplements regimen.
RO wants me 10-14 days before 3rd infusion to inject 3 months shot of Lupron to increase PSMA expression... I haven't decided and want to see how PSA behaves, but probably will do it and will add metformin and one of statins after Lupron shot.
Chemo makes sense, I had very effective chemoembolization of the prostate with Taxotere, so most probably if I do chemo right after Lu-177 it will be Jevtana.
So many guesses we have to make to charter our treatment plan and find a balance between QoL and surviving... your treatment plan is also quite novel.. so both of us really can use some good luck!
Why not vitamin C?
In low doses it is just antioxidant and probably better to let cancer cells die in peace from radiation and not help them to recover 😉, so I did not argue.
In pro-oxidant doses C could work in conjunction with Lu-177, but after ten months or so 2-3 times a week on 100gr on IVCs - I do not miss it either. I think IVCs may have a place during chemo however.
All of course my personal opinions.
Ok. I was talking about vitamin C taken daily when there are no treatments like lu177 or chemo. So, you did C IVs during chemo but not during LU 177?
On another topic- are you the person that didn’t get treatment for any 13 years until you started to feel pain? If so, then do you think continuous ADT or intermittent is better?
"C" orally daily probably is fine when no treatments of Radiation or Chemo. Yes, I did IVCs during chemoembolizations... I think it helped to recover faster, not sure about any other benefits of IVCs, that is why I'm not doing it anymore.
Yes, I didn't do any treatments for around 13 years and did not check PSA for 12 years either, but it is a very personal choice (I was 43 years old) and I do not think many could or should follow it. Depends how to look at it now...I might have missed a cure ...or saved myself from becoming a cripple 12 years ago, but that is a history now.
Continues ADT is very much against my nature and I will do everything to avoid it, so my opinion intermittent or BAT are better for sure for a QoL and maybe for Longevity (I do not like expression "overall survival"😅). Of course never say never.
Thanks for your thoughts. You have a good attitude and your actions are full of determination, which usually helps improve the outcome of anything you try.
I often look at the clinical trial results and wonder if the 2nd and 3rd standard deviations would be much more easy to achieve of the study authors included more men who use creative treatments instead of standard protocols.
I also think - Is it better to be on the more successful end of the 95% in the first standard deviation, or is it better to use some intuition and creativity towards our own treatments, which might get us to a much better CSS or longevity. In other words, is it good to get two years more life from chemo for example, or should I try something more novel that could get me one year or maybe 5-10 years more? It seems like a bit of a dice roll. I definitely think that QOL is frequently not included in the decision making process for some, and then they sometimes have regrets after being damaged by aggressive treatments. I support everyone having a say in their treatments, just like you said.
I think all of us have different circumstances, different age, different attitude to life, different beliefs… and different cancers. So there are no right or wrong path for treatments , all of us can be right in a way.
I think it is important to be flexible with your decisions, know your preference (Longevity by any means possible or QoL).
Balance? Balance sounds nice, but hard to achieve, it have to be one priority or another and then we need luck in any circumstances and in any path we choose.
Does person ready (truly ready) go and gamble his Longevity?
Does person honestly not afraid to give up physical body earlier than if h chooses SOC?
Does person have means to experiment with his treatment?
Can person withstand pressure from the family and friends to do what is “right”?
Can person own decisions he made no matter what without blaming anyone?
Can person learn not to regret his own decisions no matter what?
With help of this forum, luck and doctors, we can hopefully navigate our ship in right for us direction.
Best of luck to you whatever way you choose!
Yes we both need some luck here. QOL has been up there for me but I missed opportunity for a cure whilst it was contained by going HIFU as primary treatment. So guess partially why I am in the ‘throw everything’ camp now! I keep reading profiles where people get to PSA lower than my last 0.25 but not undetectable and they are sometimes no longer with us so if something is available to get my scans clear and my PSA undetectable I think I’ll be doing it and not even thinking about not doing HT or moving goal to stability of PSA until/ if I am lucky enough to get there. Undetectable/ clear scan using lowest impact on QOL is my current goal and I know my 0.25 is way off undetectable ( though great it’s going in the right direction). Loads of new developments too. I will get a somatic gene test on archive biopsy. I was advised no need to get my bone mets biopsied but now wondering if that was yet another mistake I’ve made!
On the positive side 100% natural sez this morning. Now worrying if the Degarelix is working! You have to laugh with the different worries this disease brings!
The only person you need to justify your decisions is you, so if you are in peace with what are you doing that is the best way to go!
Maybe you not missed the opportunity for cure with HIFU, maybe (to be honest my opinion that it is most likely) you already had micro-metastasis back then and HIFU gave you few years of normal life in all aspects? You made you decision to undergo HIFU back then based on information and your priorities available to you back then… so nothing to regret about it.
I also avoided traditional treatments for awhile (13 years more or less) and now having metastatic, last 20 months or so implementing some of the experimental ways to eliminate it or make it chronic.
Do I regret anything? Nope!
Remember test on your initial biopsy will be not adequate to the cancer remnants you have after Lu-177 and Chemo treatments, I would still do it but keep that in mind, your cancer mutated after these treatments. Same thing regarding your “missed” biopsy in bones.
Try when you make your treatments decision to use all available (to you!) knowledge and information about your cancer and then make a decision, take responsibility for it and then be in peace with it and never regret it or consider it a mistake. Just my opinion.
Laughing regularly for sure helps!
Also why not B12? (I take it because I’m mostly vegan.)
B-12 fuels prostate cancer, as vegan you can take B-12, but try to keep B-12 level in the minimum normal range.
Good luck to you. Hope it goes well. I notice you are not eligible for either trials if only lymph node involvement is detected. I wonder why. I have lymph node involvement but whole pelvic radiation is not recommended in my case due to my physiology (risk of bowel damage). Involvement was detected by PSMA scan. I wonder whether LU 177 may be more effective than spot CyberKnife which is what I was offered.
It’s been a while since I read the bullseye pilot/ current as not been ogliometastatic since last year but stuck in my memory is the lymph node ogliometastatic guys on the bullseye pilot outperformed the ones like me with bone mets. In fact of the 10 on the pilot ( they got nothing but Lu-17) the one complete responder was one with lymph node mets. I will try to find the pilot link. As I say I stopped following when my SBRT to my two original bone mets failed but would have qualified for PSMAddition but not up and running in time for me, so went out of pocket to start Lu-177 early
Where did you start your Lu-177 treatments? My numbers are similar to yours………am living near Seattle.
I am UK based so travelled to Finland. The Docrates hospital
The UK don’t treat hormone sensitive PCa witbLu-177 outside of a clinical trial and I couldn’t get a clinical trial in time.
Thanks for your reply. So UK National Medical Insurance program would not allow private payment for LU-177 treatment?
You can pay for Lu-177 and some are now getting it on the NHS for free but only if castrate resistant and chemo failed etc.
It is not standard of care for the hormone naive or hormone sensitive so no doctor would agree to give it even privately
Finland have a different law and as I had no curative option available they will use it privately.
We are meant to be getting hormone naive clinical trials in the uk but nothing yet.
Leader4077:I am starting Splash trial in Nashville next month. Check out Splashtrial.com.
Looks like LA is closest site for you.
aacrjournals.org/clincancer...
This was what I was reading last year with graphs of the 10 men.
I took the cyberknife option to my T1 and 3rd rub. I was told I still had 30% chance of a cure of the abscopal effect kicked in but they had know idea why it worked for some or who those some would be.
It didn’t stop the spread for me so my RO passed me over to an MO as fully metastatic for a new plan. She is able to offer me radiation to the prostate ( my biopsy was negative when I got my two mets) but Lu-177 for the hormone sensitive was ‘not in her gift’ here in the UK even privately.
Even though my prostate biopsy was negative it was flashing PSMA on my scan but this got dismissed as ‘urine’. At the time my gut feel was it was back in the prostate but went with the cyberknife to the mets in the hope of a cure.
It works for some apparently and was very low side effect. It did improve my PSA initially and scans indicated healing. T1 still not resolved unfortunately but going in right direction.
Thanks for that really appreciate it 👍
Yes would be good to know how number 1 and number 8 are doing! However I believe there was roll over from the pilot into bullseye. A very brave trial indeed coming out of Holland!
Just checked and both trials take lymph node mets but of course are looking for hormone naive patients not just hormone sensitive.
I was hormone naive until 25th November 2031 and Novartis said it was a 45 day rule to be on PSMAddition. I started Lu-177 at day 15 of Degarelix but privately.
Yes unfortunately I had 6 months Lupron back in 2017 when I had (failed) SRT and I am currently on 6 months bicalutamide as part of my CyberKnife treatment. I do expect it to come back in fact it has not “gone away” as latest PSA result from last week is 0.02. However if it returns in lymph nodes and is PSMA avid I would consider LU 117 and HT so I would probably have to go the Finland route. I will speak with Rambould team again. I rate them highly. The people running the trial are the same people who reported back to me on the results of my Combidex and PSMA scan last May.
Great you have a contact there, they do seem to have a great team at Rambould for sure. I am very happy with Docrates in Finland. My London team are very nice and supportive but 100% standard of care though pushed to limits where that is possible for them.
What is the contact information about Lu treatment in Finland? I’m recurrent oligometastatic and HS. Private pay at GenesisCare in London is 13,000£ Is Finland more reasonable? Thanks
Genesis in Windsor would not treat me whilst hormone sensitive
Price is similar though
I had two sessions of LU-177 while still hormone sensitive & the PSA went from 18.6 to 3 but before the third session or infusion I was told to have ADT or chemo again. The mets have increased since.
Hi, do you mind to clarify please:
- if PSA dropped from 18.6 to 3 after 2 Lu-177 sessions, why exactly before 3rd infusion you was told to do ADT or Chemo again?
- did you do Chemo or ADT after these 2 Lu- 177 infusions?
- Mets have increased after 2 Lu-177 treatments or after ADT and Chemo?
Thank you.
Hi CurrentSEO, In answer to your questions I was told I could not have the third treatment because they did not realize I was still hormone sensitive & to try ADT or chemo first, they view it as a last resort option I think. Or was it a personality clash? I will never know but it should have been my choice & I was paying for it.I did not have any treatment for around 4 years after that & when the PSA went to 19 I started ADT & now 18 months later on Firmagon PSA is 0.3. The mets came in after the LU-177 & I have not had a scan since.
I can provide times & letter in responce from Genesis Care here.
Thank you for clarifications.
It is obviously sucks that you are paying and they find an excuse that you are hormone sensitive not to do 3rd infusion. What they were thinking/doing about your hormone sensitivity during your first two infusions? Crazy…
But anyhow that is spilled milk now, no point to wonder what could have being it or regret anything…you had great 4 years run of normal life and now is a new day and new approach. A lot of people here may wish they had such 4 years without treatments…
You may still come back to Lu-177 treatment either now when you still hormone sensitive or later down the road.
Good luck to you!
Thank you for your interest. Before LU-177 I had one shot of Lupron but could not tolerate the side effects so went to casodex for around 3 months but the headaches got the best of me.My local GP recommended me for the LU-177 & I had it at Macquarie University in Sydney through Genesis Care.
As I have been fighting this monster since 2011 I am always grateful for time away from side effects & one day when the chips are down & I have tried other ADT treatments I may go for LU-177 again but not in this country.
Did you do chemo instead of the 3rd session of Lu-177? Was that when new Mets showed up?
I was told at PSA of 3 that I could no longer have the LU-177 I think because they did not realize I was still hormone sensitive & should do ADT or chemo first. They view it as a last resort treatment here.I went without any treatment for around 4 years after that & the PSA went to 19 & mets were found. Now was on firmagon monthly shots & PSA 0.3 so having a break.
I will always wonder what would the result be if I had the third infusion of LU-177.
Hi Leader4077, I did not do anything after the second LU-177 for around 4 years & that is when a scan showed a spot on my left collar bone & uptake in abdominal lymph nodes. PSA was 19 so started Firmagon & now PSA to date is 0.3 & having a break again.
I explored LU177 as a castrate sensitive treatment option upon diagnosis December 2017. As I have extensive mets through my whole torso, and it wasn’t a chance of a oligometastatic cure, I waited 6 months until I started becoming resistant, then underwent 6 NHS docetaxel sessions. That hammered the cancer down, but after 7 months it started to rise again.
I then introduced abiraterone which I’ve been on since. It started failing 18 months ago, and six radiotherapy sessions bought another year. Slowly rising again, and considering a switch from prednisone to dexmethasone as next option. (I get a jab 12 weekly - much better QOL than 4 weekly firmagon jab)
Two schools of thought are to throw the kitchen sink at it, or play your cards judiciously. LU177 remains up my sleeve.
Did you consider switching to Dexamethasone from prednisone to lower PSA, heal bone Mets, or?
Thanks Leader4077. That’s next on my list. PSA currently 0.6 and growing about 20% every four weeks. I suppose it’s just a matter of when to press the button. Now, when it reaches 2, or 10? Got a great QOL presently, and concerned a steroid change might cause unwanted side effects. Thinking about making the change in a couple of months after a big walking holiday. 👍
Hi,
Some members of this forum did successful treatments by Lu-177 while hormone sensitive.
You can search for posts by following members: GregHouston, Bangkok, Claud68 and contact them by chat. They all were very helpful answering my questions.
Thanks
Thanks
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