My husband has been told to head to Germany for Lu177. Lesions on his spine have not responded to radiation. Our doctor recommended treatment in Heidelberg which may not be available until November. We are on a waitlist and have to wait until 9/7 for an update. TUM in Munich is available now. He has three bone mets to the spine and one on his rib. Thankfully no soft tissue mets seen on PSMA. Would anyone have thoughts or advice which hospital to go to for bone mets? Thank you.
Doctor Says Its Time for LU177 - Advanced Prostate...
Doctor Says Its Time for LU177
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paige20180
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TUM offers the same treatment as Heidelberg. You can try Peter Mac in Melbourne - maybe they can take you sooner.
I'm kind of shocked at no Lupron. Why is he doing that?
Australia seems more difficult due to Covid. I can be at the gate for the Frankfurt flight in a hour.
Appreciate your thoughts. He was on Lupron prior to his radiation to the prostate bed and for a year after radiation. Doctors then took him off Lupron to see what would happen. He developed two small mets treated with SBRT. Dr thought that could cure him. Then he got a lesion on his spine about 5 months later. That was cyberknifed. It did not work. He had a PSMA as soon as his PSA started rising. Now we are looking for LU177. The plan is to start Lupron 1 month after the LU177.
Basically Lupron was avoided for 14 months because imaging, SBRT of Cyberknife was being done and Lupron would have altered treatment.
I think our doctor actually got his wires crossed too that my husband was against Lupron. Not true and I clarified this today. He actually handled it very well.
I'm not at all impressed with his doctor from what you've said. Maybe get a better one? Where do you live? Maybe I can recommend someone.
We are at Mayo and Johns Hopkins. Live in Northern Va. if you are on Lupron how can you treat with SBRT and get accurate scans? Husband was on Lupron for 15 months and taken off to see if radiation worked 6/19. We’ve been using SBRT zapping little mets for a year. Mayo is putting him back on Lupron after LU177. The thought is with less cancer burden the Lupron would work better and longer.
I’ll take a referral but our guys are considered pretty top notch.
The goal is to live as long as possible with the cancer, not to get targeted SBRT to metastases (which has unknown efficacy). Zapping little metastases for a year almost certainly has no benefit, as you've unfortunately learned. What his doctors are doing is what is called "treating PSA"
prostatecancer.news/2020/07...
He should never be off ADT. ADT is what is keeping those micrometastases from becoming detectable. Several RCTs have proven that more powerful hormone therapy increases survival.
Johns Hopkins has some excellent oncologists - who is your oncologist there?. Mayo doesn't (their best oncologist left). Mayo pushes C-11 Choline PETs, an outmoded kind of imaging, to recoup their investment. At JH, top oncologists include Antonarakis, Eisenberger, Carducci, and Pienta.
Hey Allen, I read on here all the time but never feel I have anything to add because you all are very educated on Pc.
But I do have a couple questions for you if you dont mind. I had targeted cryo at Mayo under Kwon twice, spine and ribs. His idea was to get them while they are young. I have faired very well for a number of years. Also used C11 to locate and target those mets. Sounds like you are saying not to target mets? Also, you're saying the C11 is outdated? All this time I thought these were the things that were working to keep me alive.
We moved to Phx and now at Phx Mayo under Bryce and continuing the same sort of protocol, althougth he only has me doing CT/MRI and bone scan here since PSA is stable.
Thanks, J
I am certainly not saying not to target metastases. If there are few, less than 3, and they are in safe places to target - why not? I also think that cryo can be used in places that are unsafe for radiation.
I am saying that it is unknown whether such targeted therapy accomplishes anything. There is no convincing data yet (read section III in that article). However, it is known that ADT improves survival. Because of this, ADT should NEVER be postponed. Postponing ADT while waiting for metastases to grow big enough to be detected is certainly dangerous. Why would anyone in his right mind do a thing like that? it assures the cancer will spread.
Yes, C-11 Choline is outdated, but Mayo needs to recoup its large investment. Axumin is MUCH better. Any day now, the FDA is expected to approve PSMA PET scans which are even better than Axumin. Read this to understand the various PET scans.
• in reply toTall_Allen
I agree that he should be on adt ..
We see Antonarakis. I think he’s brilliant but telling me my husband would not live a day past 8 years and giving me anxiety and dashing his hope accomplished nothing. We started at JH and I won’t get into it but things did not go well. Friends have had good experiences.
The last SBRT was at Hopkins 5/20 because Mayo shutdown for Covid. Doctors were great at both coming to agreement how to treat my husband and the doctors you named all said to stay off Lupron and see how SBRT went. Mayo and Hopkins were all in agreement.
There is some truth to what you say about the Choline but Dr Kwon sends his patients for PSMA’s and wrote letters to get my husband LU177. Our insurance won’t cover any PETs now and he’s great about working with us. We have met other MO’s that would never do any of that.
PSA is 2.7 and he can get a Lupron shot if we can’t get abroad quickly but the plan now is to let the LU177 shrink the 4 small mets and then do Lupron.
I've seen Dr. Antonarakis too and agree. He is brilliant and a good communicator. I had my PSMA scan done at JH and they tried to recruit me for a trial for SBRT and no ADT. I live in the Northeast so ended up at Dana Farber where they said yes to SBRT, but definitely start ADT too. I wonder if JH took him off of ADT because they wanted another data point for SBRT alone.
Anyway, good luck with all of this. You have good doctors and lots of options, but difficult to sort through everything and an ordeal to get treatment during the pandemic.
Has he been on zytiga or xandi yet?
No.
Any reason why?
You would have to ask two doctors and Mayo and 4 at Hopkins why they are all in agreement how my husband is being treated. We had to involved Hopkins during COVID so nice to have their opinions.
Look up Oligometastases. It’s a concept where you use ablative therapy when you have just a few Lesions. It was believed my husband could be CURED having only a tiny spot in his hip and one on T6. He had a very low PSA. No other lesions anywhere else. That was everyone’s goal was cure. Not to mask. T6 though was radiated twice and not a good idea to do a third time. Now he has 4 lesions. T5, T6, T7 and tiny spot on a rib. It is believed by our team the LU177 will reduce the lesions and then use ADT and the drugs you mention. His PSMA at UCLA has led all to believe he will do well.
I really didn’t think this was so unusual. I’ve seen other men use LU177 when hormone sensitive and have great results and read studies.
• in reply topaige20180
The current trend is to bring forward Lu-177 to much earlier stages.
Two current Australian trials:
1) Lutectomy trial (Declan Murphy, PI) is treating PSMA-avid high-risk patients with Lu-177-PSMA, followed by prostatectomy and pelvic lymph node dissection.
2) UpfrontPSMA (Arun Asad, PI) is treating patients first diagnosed with high volume metastases with Lu-177-PSMA + ADT + docetaxel vs ADT + docetaxel.
paige20180• in reply to
Thanks Justfor. Charlie falls under 1
• in reply toTall_Allen
TA, If you are "not at all impressed with his doctor" it may be time to take a step back and let people get their medical advice from their doctors and not try to override treatment plans for men you know nothing about with your "one size fits all" answers. When the doctor in question is Dr Kwon, consider that it may be you with outdated information.
Dr Kwon treats using the methods below, and I'm sure he doesn't believe the outmoded treatment protocol that a patient "should never be off ADT" as you so boldly state later in this thread.
"Research in the Kwon Lab focuses on methods to evoke a potent immune response to treat relatively advanced forms of malignancy. Specific areas of research pertain to the preclinical and clinical use of novel vaccines and antibodies to activate antitumoral T cells; the use of hormone manipulations to boost or rebuild host immunity; the treatment of patients with immunotherapy in order to induce clinical tumor regression. A special emphasis is placed on developing highly state-of-the-art immunotherapies to be tested in clinical phase I or II trials to treat patients with prostate, kidney or bladder cancer. Research in the Kwon Lab is supported by a DOD NI Award (PC 991568), DOD IDEA Award (PC020574), NCI/NIH R01 (CA82185), a CaPCure Award and a new DOD-sponsored multi-center Phase II Trial Award (DAMD 17-02-1-0245 & DAMD 17-02-1-0245S1) entitled "A phase II immunotherapeutic trial; combined androgen ablative therapy and CTLA-4 blockade as a treatment for advanced prostate cancer"."
Tall_Allen• in reply to
Mtnwife, the fact that people come to this forum with questions is why maybe you should step back and not try to interfere with the free flow of actual information. Dr Kwon is not even on oncologist. I've heard him express some very questionable opinions not backed up by actual research. Mayo, sadly, lags behind in urologic oncology. Kwon does publish much good research, which I have read. Nothing has changed the fact that ADT is SOC for the metastatic patient, and you are incorrect in your unfounded belief that it isn't.
In fact, I recently wrote an article about an excellent study of which Kwon is a co-author.
prostatecancerinfolink.net/...
I'm sure, you'll agree that nothing about that study changes the absurd notion that ADT is not required. In fact, ADT enhances the immune effect as proved by researchers at Johns Hopkins.
ncbi.nlm.nih.gov/pmc/articl...
I appreciate any info I can get even if it's not what I want to hear. I don't know if I was clear that Charlie did 16 months of Lupron and was taken off 1 year after his prostate bed was radiated. He's been off for 14 months, but resuming after LU177. Other doctors were in agreement. Not just one. We did not get the results we were looking for and SBRT worked on his hip but not his spine.
Our friend had a RP and 2 years later his prostate bed radiated and has never been on Lupron. He doesn't have the damage to his body and I would think has added years to his life having ADT available down the road.
PC is cruel. You try to make the best decisions from the info you have at the time and that's all you can do.
Thanks for that clarification - no, it wasn't clear to me that Lupron was only used as an 1-year adjuvant therapy with salvage radiation.
ADT actually increases PSMA expression for a couple of months. After that, it decreases PSMA expression
• in reply toTall_Allen
Of course ADT is SOC. I never said it wasn't. I still think, and always will, that it is irresponsible of you to try to override treatment plans of people on this forum and to disparage their medical professionals. You say that Kwon isn't even an oncologist. I find it ironic you wrote that when you aren't even a doctor.
Tall_Allen• in reply to
Most people on this forum have excellent treatment plans by top-notch oncologists. Some are treated in the community setting by oncologists who are not specialists in prostate cancer; they deserve to be alerted when their treatment is not SOC. Some are treated by urologists when they should be seeing oncologists. Some take their advice from naturopaths, herbalists, and other quacks on the internet; they deserve to know that there are excellent proven and safe therapies, and the risks they are taking. It is irresponsible of you to promote treatments that are possibly harmful- that's why God made clinical trials. But all kinds of opinions are expressed on a public forum, including yours. I never claimed to be a doctor, but I do know my way around a research study.
"Of course ADT is SOC. I never said it wasn't."
Here's the ridiculous statement you made: "I'm sure he doesn't believe the outmoded treatment protocol that a patient "should never be off ADT" as you so boldly state later in this thread."
If it's "outmoded", how can it possibly be the current SOC? Or are you spouting "alternative facts"? I hope you will take more care about what you say here in the future.
I don’t think you would have much luck getting into Australia at the moment. The Government is very strict about overseas visitors and unfortunately the US is at the top of the “unwanted” list. Even Aussies returning home are having trouble, and if they do get in, they have to Quarantine at an approved hotel, at their own expense, for 14 days. And that quarantine is very strict. No leaving the room, with security guards on every floor. There have been some breaches of that quarantine so it is now being policed very strictly.
That’s exactly what I’m seeing too. I’m most comfortable with the direct flights to Germany and after speaking to the doctor in Heidelberg, you can go directly from FRA to the hospital to problem with a 48 hour negative Covid test. The staff has and is treating patients from high risk countries and feels very comfortable doing so. I won’t take risks delaying treatment going somewhere he may be quarantined to save a few thousand. Thanks.
• in reply topaige20180
I’ve seen many men from here going to Heidelberg ... A nice place to go . In my opinion. Good luck . May it heal your husband🙏
Hello,
My advice is to pick a German hospital that also offers Actinium just in case you need to go down that road as well. My recommendation is the Department of Nuclear Medicine at the Universitat Klinikum des Saarlandes (UKS), Saarland University Medical Centre, Homburg, Germany. The doctors there would prefer that you were on Xtandi (enzalutamide) as it improves the uptake of Lutetium. if you are not on it, they will put you on it. Closest airport is Frankfurt. Good luck!
Thanks very much. Dr Ezziddin has his records but I’m concerned they aren’t taking new patients? I keep reading this. We can’t accept a delay. Most everyone is out of the office on vacation. One lesion is very big so we want to move quickly. We were supposed to go to Saarland for a PSMA mid March but Covid took care of that. Thanks for the info on Xtandi. Dr Ezziddin has our info so waiting.
I was told Actinium is available in Heidelberg alternating months so if September isn’t available we need a backup plan. Can’t wait till November. Won’t hear from Them until 9/7 after their summer break. Thanks for your thoughts.
• in reply toRyderLake2
Wonderful 👏🏼👏🏼
Univ Of Saarland Homburg, Germany told me this morning they no longer offer Actinium.
Hi Paige20180
Just curious, which type of doctor(s) MO, RO,Urologist are at this point making the Lu-177 recommendation?
Kwon Urology and Stish RO Mayo Clinic.
Perhaps you could contact Pilot52 who has been posting recently....and last I heard (on weekend) he’s had some success ...at least with information .... about possibility of accessing Lu 177 closer to home than Germany or Australia. I’m sure he’d share with you what he’s found out.
I talked to Dr. Ishita Sen about both Lu177, and actinium. They do both at Fortis hospital in Delhi, India. They do it once a month and bring the isotopes directly from Germany.
nuclearmedicinetherapy.in/t...
Don’t know where you are but there are direct flights from Newark to Delhi again. Price was 14K for three treatments of Lu177, including all bloodwork, PSMA PET scan and all hospital costs. Not a bad price really. It’s still in my back pocket if I need it.
Thanks! I live by Dulles but EWR a quick drive. Thank you!
And round trip tickets were only $688 last week.
You guys are amazing!! You made all of this happen in just a couple of weeks.
Also Paige, about 15-20 minutes from Fortis is where I received APCEDEN true autologous dendritic cell vaccines made from my tumor tissue from APAC biotech. You can Google them. No side effects and melted 30 tumors for me in 2 months, including several bone mets. That was in March, 2017. I am not cured but it certainly helped me big time. I was at the end when I went there. Dx’d 8/8/2014 with metastatic prostate cancer with PSA of 212, Gleason 9 with about 20 lymph node mets up to my neck. Currently NED, PSA .01, and most days I feel pretty good. Onco here added Keytruda July, 2018, and I did have to start Zytiga earlier this year because my PSA went up to .22. Dr. Den and my onco at Medanta Medecity said I was a good candidate for Actinium, but since I had been stable for two years except for the primary I opted for having my prostate removed 11 months ago in Delhi and had more vaccines made. My cancer is super aggressive unfortunately so just to have it under control for the time being is a success for me. My goal was to live long enough to see my son turn 12 in January which I made. Now my goal is to see him graduate from high school. At least I have lived long enough that there are quite a few new treatments for mPca. I feel for you, this cancer is terrible for a guy and his spouse or partner.
I am so happy you had such a great response! We have a 14 year old son so same boat. This is great information. Thank you❤️
I was surprised to see this being recommended before Lupron. Up until now, the LU-177 treatment has only been done with castrate resistant patients, but now they are studying it with hormone sensitive oligometastatic prostate cancer. I posted some information about the study below.
paige20180• in reply to
Thanks Gregg. He was on lupron for 15 months ending in June, 2019. The reason he hasn’t resumed ADT is we have been trying to kill mets with SBRT. Our doctor thought he might be cured from the SBRT. But T6 can not have anymore radiation. That’s why he’s been off Lupron because we were using radiation to try to kill the mets that were very small.
Our doctor doesn’t want to put him on Lupron right now just like previously while we have a 15 day old PSMA and invalidate our Scan. He thinks LU177 ASAP is the best way to reduce mets and then wants him back on Lupron.
• in reply topaige20180
I think your doctor has got a good strategy. I'm hoping for the best. Please let us know how things go with this. There may be people on the forum who want to try LU-177 at an earlier stage than the current standard of castrate resistant PCa.
Just read about a small study involving 10 patients to test LU-177 with hormone sensitive oligometastatic prostate cancer. Here's information for anyone interested.
From the article:
Overview
Radioligand therapy (RLT) using Lutetium-177 labelled PSMA is a promising new therapeutic approach to treat metastatic prostate cancer. This tumor-specific treatment is directed against prostate-specific membrane antigen (PSMA), which is overexpressed in prostate cancer cells. In the last few years, several lutetium-177 (177Lu, β emitter) labeled PSMA ligands have been developed and are currently applied to treat metastatic castrate resistant prostate cancer patients. To date, there are no prospective randomized studies published using this treatment in the hormone sensitive setting or in oligometastatic prostate cancer. Therefore, this study we will evaluate the effect of 177Lu-PSMA in patients with hormone sensitive oligo-metastatic prostate cancer.
trialbulletin.com/lib/entry...
paige20180• in reply to
Thanks Gregg. This reminds me, Our dr mentioned a Lu177 study starting at Mayo The end of this year. We can’t wait for it to start but it will help other men that may not be able to travel.
• in reply topaige20180
I'm guessing he's already had the scans to see if his lesions are PSMA avid. If that's the case I think the treatment should work since it's been proven already in men that have castrate resistant prostate cancer.
A lot of the meds that are being using early now with good results were once only used later on so this trial may be the beginning of using LU-177 earlier. With many treatments, the earlier they are done, the more the benefit so I would be encouraged by that.
Wishing the best for him and you. Guys are lucky to have caregivers that are so involved like you are.
Be encouraged. I know it is expensive but my 6 sessions of Lu177 over 3y probably slowed my progression of aggressive PC substantially. Rob
I needed this. I Have a great job and don’t need things so not concerned with costs very fortunately. But you must have felt my suffering. I love my husband so much. Thank you so much for the encouragement.
'I love my husband so much'....... you're a darling..... I nominate you for caregiver of the month....
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 08/25/2020 1:48 PM DST
You can also contact in Aiims delhi(India) .. It's cheap and available.... If you want, i may contact the doctor and provide you the number... My father's treatment (lu177) is going on...
Hi. Not sure I understand. Contact Aiims? Is that a hospital?
We are very, very happy with Dr Ishita Sen. Another gentleman from this site went to her after us and he is a doctor and said she is an excellent doctor. Nice to hear that from an experienced physician.
Aiims is india topmost hospital(government hospital)...and thier doctor is one of the best doctor.... There is dr madhav (nuclear medicine) ....dr.ishita sen is a dr. of fortis... Fortis is a private hospital and very expensive than aiims... However she is also a good doctor.. Depend upon your financial, you can choose between these
Thanks for the information. We are in the middle of treatment and very happy with Dr Sen. $5500 for LU177 and all the bloodwork and scans by US standards we felt was a great price though we went to India because it was the only hospital and country that offered care. Medanta is our backup hospital for possible vaccines in the future. Thanks again!
Yes, both of them (fortis and medanta) are good hospitals... Hope for the best... And hope, the treatment works well on your hubby.... Could you please let me know... How many cycle has been done there and whats the result.... My father got 1st cycle and PSA is constant at 2.34 but no pain relief...
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