My brother-in-law had prostate cancer in his bones with a PSA in the hundreds. He went to Germany and had two treatments of LU177. He came back to the US, had a scan, and says he is now cured. Is that possible?
Cured after LU177: My brother-in-law... - Advanced Prostate...
Cured after LU177
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epfj3333
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No, unfortunately. It just means there is no visible evidence of disease. There will always be some cancer cells that escape.
That's what I thought. He's a "know it all" and didn't want to go through the American doctors because he thinks they don't know what they're doing. He figures the Germans know best. Now he thinks he's cured. I never did like the guy! I talked to my MO yesterday and asked him about an ADT vacation for me. He said no. I'm on Firmagon for life. I've learned to tolerate it so I'm OK with that. So far, so good. PSA is undetectable and all scans are negative. I appreciate your knowledge.
I wonder why your MO says no holidays? My husband has been on Lupron/Eligard for nearly 10 years (Stage 4) now and he has had 7 holidays that lasted 6-7 months before his PSA climbed to 4 or 5. The holidays are very restorative physically and emotionally.
No holiday for my husband either. 6 years at Gleason 9 stage 4 and doing well. I'm sure it depends on diagnosis details and doctors. Pretty sure the stress of a holiday from treatment would really get to my husband- he'd worry. He's perfectly happy not having one. Every guy is so different in their response to treatment- physically and emotionally.
Read this:
prostatecancer.news/2023/04...
• in reply toTall_Allen
Very Interesting piece. There's a lot of information there. In fact, I found it interesting to learn that "Until Castrate Resistant, Xgeva SHOULD NOT BE PRESCRIBED, due to it's cumulative adverse side effects". I didn't want to start on it straight away, but my Urologist at the time insisted it was a "Preventative Measure" . Thanks again for sharing
Tall_Allen• in reply to
There is some new info from STAMPEDE (not published yet) that there may be benefit in using it earlier. At any rate, a DXA scan should drive the decision.
• in reply toTall_Allen
Thanks, I never got a baseline dxa for future comparison. When I asked one of my doctors about it, she shrugged it off and said, "we don't normally do that, besides you were probably no different then, than you are now". I was very upset with that answer, as I'm pretty sure I wasn't osteopenic 4 years ago when I started treatment.
Tall_Allen• in reply to
Can you get one now?
• in reply toTall_Allen
I did in November, at the same time they x-rayed and found the t-11 fracture. NOT ordered by my Oncologist, but rather by my Primary Doctor during a routine visit. She was concerned that I had pain that wasn't getting better.
dxa findings
absolutely, everyone is different but if you’re not different and it works stay the course. I know I cherished my vacation.
that’s what I figured. Sounds good but just a way to slow the rot down 😢
So you don’t think 177 can cure ogliometastatic prostate cancer? The doctors involved who I speak with seem to think with low volume disease it’s possible for a cure. If not now, but in future cases.? I’m not sure if they’re curing prostate cancer in Germany, but I’ve heard that LU 177 has taken the place of chemo in Germany. Any truth to that?
I don't know but the guy I'm talking about had a very high volume disease with mets all over the place including bones. His PSA was in the hundreds. He didn't want to go through things you have to go through in the US before you can get 177 so he went to Germany. He says the reason you can't get 177 to begin with here is that the American doctors are "locked up" by FDA rules. He also thinks that the reason 177 worked so well is that he hadn't gone through all the American protocols first. He had two, 3/4 strength 177 treatments 8 weeks apart. Since his last scan said NED he assumes he's cured. I believe that NED means that there's no "evidence" of disease, not that there is absolutely "no" disease. I guess if it was that easy to get "cured" we'd all go to Germany.
I don't think they call it "cured", more like "complete response". Either way, if it's true in your BIL's case it's a huge deal even if it returns at a later date. That's probably not a result he would have gotten if he followed current SOC in the US.
They didn't call it "cured." He did. The doctors called it NED. He assumes that means he's cured and will never have to deal with prostate cancer again.
Any reason he chose germany over india?
I don't know but I assume he thinks the German doctors are technologically superior to the doctors in India. He did alot of research. Money was no object.
I'm confused by the whole LU-177 treatment, particularly here in the US. I thought this was an option for castrate resistant pca and the results extend life by a median of 4 months. I usually go to TA's blog but all I see there is some clinical trials. I read here most recently since FDA approval of guys starting it but little in the way of results (except the unfortunate gents who can't make it through the full treatment.)
Once cancer is systemic, it will mutate around whatever you throw at it - the best you can do is knock it back to ground zero. At least with current medical technology.
do you think it’s possible to knock it back hard enough to take an ADT vacation? I need to get off ATD and let my body restore itself.
This is everything I know about vacations. It's a very personal decision:
prostatecancer.news/2023/04...
A big Yes 👍
My neighbor has been on ADT since 2015. His PSA & scans have been undetectable ever since. Six months ago he decided to take a vacation. His MO told him they would check his PSA in six months. Six months later his testerone never recovered enough that he could tell a difference and his PSA was 7. He was promptly put back on ADT. It's been a year now and his PSA is down but still detectable. My MO told me it was up to me but he advised me not to take a vacation so I'm not. I've learned to live with the side effects. Everyone is different. I'm not messing around with what's working.
Is it considered systemic if metastatic PC is in bones and lymph nodes ?
Bones, definitely. If it is in pelvic lymph nodes only, it may still be only in that area (lymph, unlike blood, circulates slowly).
I was in the some situation after my treatment in Germany in 2016. My cancer showed mets again in 2022, despite of ADT and darolutamide treatment.
He is not cured. His situation is usually called no evidence of disease and he should continue on ADT.
Have you considered the possibility that not doing ADT during that time would have had the same result?
if it makes him feel better to say he is cured, then so be it. Let him enjoy the moment and only time will tell if he is truly cured. However, one should not be pushing or advocate a cure by taking trip to Germany. unless it’s backed by solid research data.
I agree, I never said he was cured. My “Yes” was in response to SViking,
He may feel cured. But it is unlikely that all his metastatic cancer cells were killed.
It's not unlikely it will return.
But maybe it will be a long long time. TA would know what the statistics are.
But it might be such a long time that he dies from something else.
well, you sure better live longer than your brother in law! Or else his fancy Germany move will make him look like a genius.
(humor attempt)
(this note was not necessary 30 yrs ago)
Your bro-in-law's situation and response appeals to me. Will you share where he went in Germany and his treating physician? Thanks
He went through an organization called Medical Tourism Worldwide/Book Your Treatment. They arranged everthing - scheduled treatment, provided transportation, translator, etc. His doctor was Dr. Stefen Dresel at Helios Hospital, Berlin-Buch, Germany. I think it was crazy expensive but he can afford it.
It's significantly less expensive if you deal directly with the hospital, but you have to be comfortable with international travel. Google the info in epfj3333's post and email them directly for more info.
He doesn't care what it costs. He flies first class. He's travelled all over the world. I think he liked the fact that everyone did everything for him.
Sorry, I actually meant my reply for UniversalSurfer , I hit the wrong reply button. It's good to hear your BIL was satisfied with the service, but I just wanted to point out an alternative in case there are others who prefer to economize.
Much thanks. I don't speak German but I'm a veteran international traveler. I am fairly prudent, so I would opt for less than concierge service. 😉
You don't need to be able to speak German, they pretty much all speak English. In a pinch there's always Google Translate. 
Thanks again. Google Translate is definitely a lifesaver!
Thank you kindly 🙏🏾
would that he were correct, but it sounds like he is confusing (either through error or through wishful thinking) "no evidence" or "complete response" for "cure"; while his arrogance may be difficult to put up with it, let him enjoy his period of being "cancer free", and extend to him the wish (that all of us probably have) that he live long enough to die of something else
" He came back to the US, had a scan, ..." I assume this was a bone scan. The LU177 therapy can shrink the mets so much that they are no longer visible on a bone scan. A PSMA scan will reveal mets.
I do not believe the doctor in Germany said he was cured. Usually they leave further therapy at the discretion of the treating physician or recommend Xtandi for maintenance. Looking at the Embark trial, this could be Xtandi monotherapy if the patient showed an excellent response to Lu177 .
Many patients prefer the Lu177 therapy over a chemo. But I think more patients get a chemo than a Lu177 therapy in Germany. Chemo is cheaper.
If someone fails Xtandi (before going to Lu177) is this a bad sign for potential Lu177 efficacy?
No, Xtanti will increase the PSMA expression and improve the efficacy of Lu177 even after you fail Xtandi.
"In conclusion, short-term enzalutamide medication significantly increases PSMA expression in patients with mCRPC, irrespective of prior enzalutamide exposure." pubmed.ncbi.nlm.nih.gov/354...
Four trips to University of Heidelberg both LU_177 and AC-225. Thirty one months, no ADT PSA <0.04. Most likely AC-225 addition most responsible. Yahoo so far.
Just out of curiosity, does anyone have a ball park estimate of cost for the treatment (just the treatment not all the acillary expenses) in Germany?
Around 12K euros each treatment.
Thanks! I was just searching and found some options online that track with that.
Currently I am still castrate sensitive with 5 mets in lymph nodes found in 11 months ago (none in prostate after Brachytherapy 2015 at age 48 with agressive strain of PC) which are responding slowly but appropriately to ADT therapy with Lupron & Erleada as evidenced by Initial and follow up PET Scans and reduction progression of PSA from 4.0 to 0.1.
Lack of data on efficacy of this treatment in my current condition aside I am curious to discuss this as an option to pursue outside of my Insurance approved SOC at next appointment with MD Anderson Oncologist. Making the 15-20K out of pocket expense is not insignificant but seems like a pretty good investment if it can delay progression and extend my quality of life while I am still in pretty good shape and active.
Not sure how many others have done this but would be great to hear for anyone that has!
I had Lu 177 PSMA treatment in Germany in 2016 after lymph node metastases in the pelvis and the retroperitoneum were found 14 years after having prostatectomy and then salvage radiation.
I was started on ADT with Lupron, and I decided to go to Germany to have the Lu 177 treatment. It was not easy since I had mCSPC and they were treating patients with mCRPC only at that time.
One treatment made all mets PSMA negative, which was documented by several PSMA PET CTs . I paid around 9K for the treatment.
I wonder everyone doesn't get the that treatment. I keep hearing it's because the drug companies don't want anyone to get cured because they wouldn't sell as many drugs but, while that may be true, I can't imagine a drug company can prevent cancer from being cured. So are you actually "cured?" In other words, the cancer is gone and won't return?
No, the cancer returned and metastases were visible again by PSMA PET/CT only in 2022. I never had metastases detected by CT or bone scan. Mets were detected in 2016 by a PSMA PET CT clinical trial.
There is not cure for metastastic PC.
The game is to prolong survival until one dies with the cancer and not from the cancer.
Thanks again tango65! My lymph node metastasis situation almost identical. While I realize it's not a curative treatment and unlikely to get me off ADT long term what little I can find on the its efficacy for individuals that the barrier to its application in treating individuals still mCSPC is primarily financial. A treatment with a better than average opportunity to provide several years undetectable MET's on the front side of this process and possibly some relief from ADT is worth pursuing if money and time the only obstacles. I'm curious to hear the oncologists thoughts.
I agree. I hope we'll have data from the MCSPC Lu 177 PSMA treatment clinical trials in a near future.
I am scheduled to have a meet with my Oncologist at MDAnderson next month regarding seeking the LU-177 treatment overseas in the near future while still mCSPC.
-Are there any questions that you asked or didnt ask but wish you did when you were pursuing the treatment?
-Anything that you know currently that would have changed your decision?
-Did you continue ADT at any point after becoming undetectable and before becoming detectable?
Thanks!
I travelled overseas ( UK to Finland) for early Lu-177 when I had multiple mets to the spine. Started Degarelix and Lu-177 in Dec 21. My MO did 3 infusions 3 weeks apart ( Icommuted to Finland to get this). I then did 3 x Docetaxel so an unusual 3 plus 3 combo ( no trial but the heterogenous nature ofPSa meany it made sense to me to use Docetaxel to mop up any PSMA negatives. Definitely not claiming a cure but no regrets doing it, I fasted and was iced for Docetaxel / lost no hair/ no side effects/ worked full time. Also had an unusual radiotherapy ‘triple’ after of Vmat to prostate and area, 2 brachtherapy and a SBRT to T9 which was still flashing. Added Apalutamide and am now 10 months NED but no idea what did what or if I’d be in same place just on ADT but it’s great to hear clear scan after where I was in Dec 21 tbh.
Good luck
It is important to try to monitor the research of new therapies like lu177-DTPA-SC16 and lu177-FAP - 46 if the cancer cells mutate to a neuroendocrine type. In the German uni hospitals the treatment is not better than in the US, but the availability of new treatments can be many years ahead.
lewicki• in reply to
Yes . AC-225 Is not available in the US but I think there may be some trill's ongoing.
I failed chemo dociltaxel only then could i get LU 177 Insurance approval , health first insurance, NYCity Mt Sinai hospital
I just don't understand why, if LU177 is the cure, why do they make you go through all the other stuff first, which apparently is not curative. Can it really be about drug companies and money?
Pluvicto is undergoing clinical trials in this country which are required, usually in a series of steps, to get approval. The next approval will be for Pluvicto without the requirement of chemo first because that trial had positive results ("Phase III PSMAfore trial with PluvictoTM met the primary endpoint of radiographic progression-free survival (rPFS) in PSMA–positive mCRPC who have been treated with androgen-receptor pathway inhibitor (ARPI) therapy1") although the findings haven't been presented yet, so approval probably some time this year. The current trial is PSMAddition that will compare Lu-177 and SOC to SOC treatment alone in MHSPC. If the results of that are positive Lu-177 will get approved for use in that population. It's a process new treatments have to go through in this country to get approval.
In Germany and some other countries the rules are different so they can use new treatments that are not currently available in the US.
I really wish this could be put in simpler terms so I could understand what you said. I really mean it. I have no idea what you said, although I think you really know what you're talking about.
When DH began Pluvicto in December, the UVA nurses/ doctor said that the program had a 6% cure rate which astounded us. We didn’t think there was any chance of a cure, but we sure were encouraged. That’s the only time we’ve ever heard the word cure in DH ‘s case.
No cure................he has my permission to use the term remission for his condition .....
p.s. Tell your Brother-in-law (BIL) I have some swamp land in Florida he may be interested in.
Good Luck, Good Health and Good Humor.
j-o-h-n Sunday 05/14/2023 9:46 PM DST
I had 2 sessions of LU-177 also & psa came down to 1 but 2 years later was up to 19 again so it is not cure. Was waste of money & time.
His doctors in the US told him to get his affairs in order. Now after two partial treatments in Germany, he thinks he's cured. I guess if it makes him feel better, let him think it.
While on the LU177 did you continue on ADT?
He was never on ADT. He bypassed all the US treatments because he didn't want to go through the side effects. So he went to Germany, had two shots eight weeks apart and says he's cured.
No, I was not on ADT at that time. I had a psa of 19 & started treatment with Lupron & casodex which I could not tolerate SE of, so GP recommended I try LU-177.
GP? General Practitioner?
The ;list is on the right side of the forum, it's become very helpful to me! healthunlocked.com/advanced...
do you think it would’ve helped to be on ADT during your LU177 treatments?
No, I could not tolerate lupron & casodex so stopped ADT for around 12 months then GP started me on LU-177 treatment. PSA was 19 & went down to 4 on first shot then 1 .6 next shot.
I would add that when they found out I had been referred by my local doctor & had no long history of ADT they would not give me a third shot.
That's a problem for many of us.
I thought in the US that you had to go through all the other treatments before you qualified for LU 177. That's why everyone goes to Germany.
That is true. Is sounds like ARIES29 is in Australia where they are also offering the treatment earlier than in the US.
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