I spoke to a hospital in Israel and that is what they had told me, as far as they are concerned. I am wondering if you hit it with Lu177 and HDT (before you are HDT resistant) could you possibly cure yourself if done when the matastatic cancer is in its beginning or low volume. Do different centers offer Lu177 for early cases?
Is Lu177 just a recourse for when oth... - Advanced Prostate...
Is Lu177 just a recourse for when other metastatic prostate Cancer options are exhausted?
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Dave78717
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In Melbourne they have trials in which they treat patients with Lu177 who are castration sensitive. I found a doctor who did it outside of a trial. He wrote in his report that I am CRPC to be on the safe side I guess. The therapy will not cure you but "restage" you to fewer or no detectable metastases.
Trials with Lu177 at Peter Mac
Australia seems to be pretty advanced when it comes to Lu177. Still you say the idea is new there also. Do you know what a PSMA PET scan costs there, for non-Australians?
Dave, you might find the video from the link below of interest as it gives an overview of some of the current work with Lu177 being done at Peter Mac in Melbourne. It will give you an idea of where things are at as a result of what work has been done over the years- quite a number- and what work is presently in train. From memory, I seem to recall a 'hint' in the presentation about consideration and the benefit of Lu 177 used earlier for mCSPC. Possibility I'll have more information on this after Wednesday when we have a Zoom meeting scheduled.
My understanding is that to access Lu177 privately in Australia it costs about $10 000 but Patrick Turner on this site will be able to give you more accurate information about costs.
Our borders are presently closed due to COVID and unlikely to be opened until much later this year. I have heard (second hand) that there are some exceptions for special medical situations.
urotoday.com/video-lectures...
Regards, Marnie.
I watched the video, interesting. Easy to see the U.S. is way behind
Yes Dave. It seems to take a long time to get things approved in the U.S. Hopefully, this year things will move along...at the very least easy, cheap access to PSMA's so that those men and their medical advisors who want/need a 'clearer' picture of where things are at can be confident they have the right information to guide the best and most effective treatment. I think we're a bit 'spoilt' here with universal medical health coverage and leading researchers supported to conduct trials.
Just had one, not Medicare subsidised here for PCA at all. But 'only' $695 AUD
I should add..for Australians, when in (admitted to) a Public Hospital...owned by the Government....lots of them, everything is free. Gough (pronounced Goff) Whitlam as Prime Minister (elected 1972, only in 3 years odd as his reforms were revolutionary) changed all that for us for the better.!
There are no known cures for metastatic PC, but it can be managed as a disease you live with for a long time, hopefully. Even with low volume of metastases there are thousands of micrometastases that are too small to see with imaging.
You may be able to get Lu-177-PSMA-617 for mHSPC in Germany or India. There is a clinical trial There may be a US trial starting in a few weeks:
clinicaltrials.gov/ct2/show...
I am aware of the study and I likely qualify is what I was told by them. It seems like its a new idea to use Lu177 early before one exhausts the benefits of Lupron or what ever else one can do. I want to know what the thinking is here.
I suspect the survival improvement will be greatest if used earlier. So far, we know that it beats chemo (Jevtana). Does it beat 2nd line hormonals? What is the best sequencing? Does it improve results if used together with other medicines? All good questions that no one can answer yet. Like every known therapy for metastatic PC, it selects for resistant clones, so it is doomed to fail at some point.
in reply to Tall_Allen
Tall_Allen, Any guess when it will be widely available in the states? Thank you.
Tall_Allen in reply to
It will probably be FDA-approved this year.
Can you direct me to the locations the trial will be conducted at? Thanks in advance! There are no exclusions for soft tissue tumors is there? Or MS?
They haven't announced the locations yet. Keep checking the link.
Thanks!
The Urology Cancer Center with Dr Luke Nordquist has been notified they will be approved to be part of this trial in early/mid summer. They are located in Omaha, NE gucancer.com
Thank you! Hoping Moffitt will start it too.
You could try and call their nuc med dept. I'm guessing they will have an idea by now if they are applying or have been approved. Not sure how many sites were going to be allowed....I believe the company was going to be pretty selective and keep the number relatively low.
Thank you for the info - I will see if I can get more info from the center as you suggested. In an earlier clinical trial link Tall_Allen had posted Moffitt was listed as an earlier study participant. My Dad’s MO there said she didn’t know about it and then gave an unfounded reason I think for my Dad to not be considered for it based on a soft tissue tumor. My very medically uneducated brain read the Novartis study details and I thought it said that soft tissue masses wouldn’t exclude patients. I’ll do some more digging. Thanks again.
I am surprised to hear that from Israel. My oncologist recommended it as "earlier the better", especially if you can catch it before bone metastases. I went to Prof. Baum in Wiesbaden where he has a dedicated clinic for LU-177 . Highly recommend. No side effects, no fuss.
I got a reply back from Technische Universität München / Technical University Munich, they also do not do this for early Metastatic Cancer. I'm inquiring of Finland now. I suppose I can try and contact that Prof Baum. Can you give me contact info for him?
There were three of us that went to TUM and all got the same answer. One guy looked like a Russian Christmas tree after his PSMA Ga68 scan, and they pushed more chemo. They said it was too early with 10s of mets. I won't get on my soapbox on this subject. Anyhow, Baum's PA is Natalie. Her number is+49 611 9500 6816. Be patient as they are really busy and she doesn't always answer the phone as she's not in her office most of the time. Have your scan results, blood work, etc. available to send once you talk to her. His clinic is in Wiesbaden close to Frankfurt. Good luck. You won't regret it.
One problem with doing it earier is that the patient is less likely to be PSMA avid. In general. men who are CRPC are the most PSMA avid.
So far, the trials involving LU-177 have eliminated around 30% of patients either because of lack of PSMA or FDG discordant disease.
Dave78717 in reply to
This is what I am trying to understand. If a proportion of the cancer does not have PSMA then does the Lu177 not get this cancer? Or is it all mixed intogether so the radiation tends to get it as well? Or is the idea that if HDT still works for you AND you hit it with lu177 you are basically going to really have a chance at destroying it with both treatments working at the same time. --- I don't know what the researchers are going for in the study using Lu177 for early metastatic. I guess i can ask them in Nebraska.
in reply to Dave78717
The LU-177 specifically targets the PSMA so any cells that don't have it or don't have much don't get radiated by the beta radiation resulting from the decay of the radioactive isotope. It is a systemic treatment so the whole body does get radiated, but it's targeted to the PSMA.
PSMA treatment has some very significant side effects.
The PSMA concentrates in salivary glands and the kidneys where it kills those cells as well.
For this reason, even on otherwise healthy people, they will give you only a limited number of treatments.
It's not something you want to use indiscriminately.
If you have any kidney issues (current or on trajectory) you really want to use something else if you can.
If you are already suffering from dry mouth, you may not want to use it as all. Non-functioning salivary glands don't sound like much, but it can be a real killer in its own right.
There are lots of reasons to reserve your finite number of PSMA treatments to when you really need them. As opposed to using them up early on.
Lu177-PSMA treatment is more likely to have a greater effect when there is lower disease burden as long as there is good PSMA avidity on PET scan (Ga68 or DGFPyL). So you need to have the scan to know. Also, lymph node metastatic sites seem to be more favorable than bone, but both can respond. Hormone sensitive PC can also respond to treatment if sites are PSMA avid. I identified 2 pelvic PLNs on Ga-PSMA PET at a PSA level of only 0.24. Ended up treating with them with IMRT rather than Lu177.If the disease is fairly advanced (castrate resistant) it may be good to have a FDG PET scan as well to see if there are non-concordant (not-matching) sites not expressing PSMA, which can make it futile to treat.
Early treatment of mHSPC is worthy of consideration rather than waiting for all hormonal treatments to have failed. But that is my opinion and not yet proven vs. keeping it in reserve.
I would get the PSMA PET scan done and then send the disc an discuss it with physicians at experienced treatment centers, such as in Ausralia, Germany, India or at trial centers here.
Dr. Sen in India says there is some evidence using it before hormone therapy increases its effectiveness but that hormone therapy first has been the normal course of practice
Dave78717 in reply to
Do you know anymore about this idea? Did he elaborate? I mean if you do lu177 with HDT as oppose to doing Lu177 after HDT ("stops working") which would lead to long "life"? I think this is a sequencing question. Maybe you do lu177 at the beginning with HDT and then just HDT for years.. than do lu177 again. I don't know.
in reply to Dave78717
No she did not. I was considering whether to do that but just decided to get on the treadmill with all the other schmucks and just do what insurance pays for. Her exact quote is: While there is some evidence coming in favouring early institution of Lu177 therapy, it is usually recommended when a patient achieves castrate resistant status.
Dave78717 in reply to
I'll try and find more on this subject. The one video with the oncologist and urologist in Australia...the urologist was sort of fashioning a rational. I should re listed to it.
Okay so is Lu-177 kind of a reset of the cancer so other stuff can work again? I just see how awesome it is but can't find enough information that explains what it specifically does.
Hi Dave,
I had a LU177 treatment in New Delhi with Dr. Sen at the Fortis Memorial Research Institute on March 18. I had a PSMA scan done in January 2021 at Excel Diagnostics in Houston that showed a prostate lesion and 6 very small metastatic lymph node invasions in the pelvic area. PSA at the time was 17. I was diagnosed with prostate cancer in late 2019. I decided to use this therapy as my first course of treatment since I have not had any chemo or hormone treatments done and the research seems to indicate that it might work better in that scenario. I had applied for treatment in Germany and Israel but they all said this treatment could only be offered if I had a more advanced cancer case. Luckily, Dr. Sen agreed to take me on as a patient. In a month's time after treatment, my PSA has gone from 17 to 5.1. I haven't had any lasting side effects and feel great. I'm heading back to India next month for another PSMA scan and my second treatment and I'm really looking forward to it. The cost of the treatment is half as much as they charge in Germany, and at Fortis, they use the same LU177 flown in from Germany for treatments. Working with Dr. Sen and the staff at Fortis has been an awesome experience. They are knowledgable, professional and caring.
in reply to GregHouston
That seems the way to do it though I do wonder why you don’t treat the prostate at all
GregHouston in reply to
Well, Covid delayed my first option. I had been accepted into Nanospectra's gold nanoparticle ablation therapy clinical trial in Houston in mid-2020, but after the biopsy, my PSA rose above their exclusion criteria, and I was no longer eligible for that treatment. Probably was a good thing anyway, because even the best MRI would never have picked up the small lymph node situation that was found on the PSMA scan.
in reply to GregHouston
Were these nodes avid? Or just suspicious
GregHouston in reply to
Avid. The Excel PSMA scan report indicated "findings are consistent with PSMA expressing metastatic lesions involving multiple lymph nodes in the lower abdomen, and pelvis…"
Can you give me some contact info regarding a PSMA scan in Houston? I'm close enough in Austin. Flying to UCLA may be unnecessary. Are you doing any HDT? I am getting somewhat aware of what is possible with Dr Sen from a few others. - Thanks.
Here is the one at Excel: clinicaltrials.gov/ct2/show...
Susan Cork, Therapy Coordinator. Direct Line: 713.341.3203
scork@exceldiagnostics.com
The PSMA scan is not covered by insurance and is done under a "clinical trial" setting. It can set you back about $5K, if your insurance won't pay for the PET scan, etc. You can also check with clinicaltrials.gov for other locations doing clinical trials with PSMA scans, too.
I am not doing any HDT at this time, although it was suggested as a treatment adjunct. We have some family history of early-onset dementia, so I really don't want to rock that boat right now.
There is a LU177 clinical trial enrolling at Excel in Houston but candidates must have had HDT prior to treatment as well as a rising PSA count.
Do you have the contact info for Dr. Sen? I just completed three LU177 treatments in Vienna and need 3 more. Results were very encouraging. I am hormone sensitive. Unfortunately, I have to be very careful regarding costs. Wish you the very best. Thanks Greg.
Mr. Manav Sadhwani works in patient advocacy and logistics and can help you in sending your health documents and planning your visit to India. His email address is: info@nuclearmedicinetherapy.in
Dr. Ishita Sen is the director of the Nuclear Medicine Department at Fortis Memorial Research Institute. Her email address is dr.ishitasen@nuclearmedicinetherapy.in . Wishing you much sucess on your treatment!
Thanks again!!!!
Let me know how it goes! Good luck!
Greetings Dave,
Please tell us your bio. Age? Location? When diagnosed? Treatment(s)? Treatment center(s)? Scores Psa/Gleason? Medications? Doctor's name(s)?
All info is voluntary, but it helps us help you and helps us too. When you respond, copy and paste it in your home page for your use and for other members’ reference.
THANK YOU AND KEEP POSTING!!!
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 04/19/2021 10:06 PM DST
I was diagnosed Nov 2019. 1 Gleason 8 tumor, 1 gleason 6 (very small). It seemed like if I treated it I could be ok. Flew to Germany for HIFU because it was far cheaper than in the United States, the experience level of the doctor was like 24 years and the HIFU machine was the FocalOne which seemed to be the best. My PSA before HIFU was 15. The procuedure went well I got out of Germany 3 days before flights were being cancelled because of airline restrictions.
PSA went down to 4 then 3.6 then up to 6 then up to 13.5 and after a few scans it seems my PCa metasticized at least to 1 lymph node.... and that is where I am today. I'm 59
Thank you Dave for your quick and detailed response. Now it would be a good idea to copy and paste your response on your home page under where you state "Hi I'm Dave". This way members can view it and you can also refer to it when someone asks for your Bio. Keep posting here. It appears that some of your info is out of sync. Ask members here for clarification. I am NOT a Pca expert but I do know humor.
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 04/20/2021 6:25 PM DST
Hi Dave,
I was wondering if you had an update on your experience/ situation. I too have a failed HIFU and am considering LU-177 as first systemic treatment now I have mets.
I went to India twice now for lu177. My Psa in June was 30. I got a lupron shot then went to India. Psa was down to 2.5 mid July before I got my first lu177 300 miC treatment (because of lupron). I had at least a 1.9cm lesion in lymph node.
9 weeks later was back in India. Psa was 7. Lesion was .9cm. This was ok since lupron should have worn off by then so it seems my 30 Psa was down to 7. Got 250miC this time. After 5 weeks Psa was 6. Probably this is good and I have to go back at least 1 more time maybe twice. I will get another Psa test soon.
What’s your story? What is your Psa at? Any info on your Mets? Others have had possibly better results who are trying lu177 as a primary treatment for early metastatic PC. I’m basically in the middle of treatment and I do plan to continue.
I do have some dry mouth issues but it is tolerable.
Thanks Dave
I went focal for first treatments after diagnosis in 2016. A rise in PSA from my 1.2 to 5 at the start of this year was a surprise so I asked for a PSMA PET scan and my HIfU surgeon broke the news of 2 mets - T1 on the spine and third rib. She said it was a 1 in 1.009 situation. The prostate biopsy/ scan was clear.
She passed me to a radiooncogist who recommend SBRT which I had to these two mets. She said the research showed a 30% chance of a cure still in ogliometaric scenario. Unfortunately it wasn’t to be and I now have 7 new mets ( 6 to spine, 1 to scapula) and PSA on Monday this week was 17.1
I had first ( started dose) of Degarelix on Thursday. I have enquired about the PSMAaddition trial ( 45 days of HT allowed) but unlikely to start in time so have booked privately to have Lu-277 on 9th December all being well. The PSMAddition trial would have been free but randomised so I may not have got Lu-177 early anyway.
Lu-177 onco gave Degarelix and shot of radiation to nipples too. My normal medical onco wanted me to start Degarelix 3 weeks ago but I wanted this final consult.
Medical onco says to add Abiraterone , second opinion medical onco said to add Apa instead of Abi for lower side effects
Lu-177 onco said could consider Lu 177 has replaced Abiraterone but could be added in
Not sure what to do re that one!
Lu-177 onco says next steps will depend on response to first infusion rather than a fixed course of Lu-177 so this is different to PSMAddition style course.
Radio onco has taken stampede trial type scans which show 1 met only. On that basis she is prepared to do radiation to the prostate which is flashing PSMA but earlier this year they thought might be the urethra.
I haven’t had any focal radiation on the prostate so the Lu-177 will be the first but that’s not enough to prevent a full treatment .
Thank you
Sorry for not replying earlier. I was not monitoring healthcare unlocked enough. I will now. I saw your other new post and see you are getting responses. I will try and understand your situation a little later but since you have several mets it’s a little different from what I know. And I am not familiar with the various drugs so I can’t really comment on them. I agree that US trials with a 50/50 of getting Lu have little appeal. It looks like you plan to go to India on the 9th. I can maybe say something about what that is like. It’s easier than it may seem. You need to have a medical visa the medical eVisa is a pain for multiple visits. I think it’s good to try something to protect your salvitory glands - though I don’t know how effective it really is. I feel mine have really recovered a lot, not it was that bad, but I haven’t been bothered by it much of late I just realized. I used accent to clog the glands just before treatment. It might have helped. Again I’ll lookat your other post. And reply more later today.
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