I'm new to this site, have read some scattered posts, and wanted to pull some threads together on this very interesting subject. You are all part of a impressive community; where would we be without the internet!
I'm UK based, 58 years old, and last October was fit, playing my normal weekly squash and running. Felt tired, developed night sweats, thought I'd caught a bug and got some antibiotics from the doctor.
Couldn't shake it off, went back and a blood test flagged a warning PSA of 63 followed by a MRI and bone scan which confirmed diagnoses with T4 prostate cancer 4th December 2017, Gleason 9, metastactic from hips through spine to skull. Luckily a CT scan shows no spread to organs.
Pretty much over the shock and fear, and have embraced the horror. Started hormone treatment (degarelix) same day, and apart from some expected hot flushes, no side effects, so this January, started chemo as well (docetaxel). Just had my second of six sessions, three weeks apart, and the prior blood tests show the PSA dropping to 7.2 then 1.9 a couple of days ago, which would seem to indicate I'm responsive to treatment.
I'm still getting to grips with the whole thing, but as a layman as I understand it, I'm on hormone treatment for life, the chemo will knock the cancer down, then it's a waiting game to see if the remission is months or years before you become resistant, followed by a second line of defence with drugs like arbiritone and further chemo to try to kick the can down the road.
I've only had an hour with a doctor registrar who took case notes and explained why the chemo was run in conjunction; I'm not meeting my actual consultant oncologist until next month, and want a meaningful conversation with him.
Is this treatment to be used as a card much further down the line once I'm becoming resistant, or should it be looked at once when I'm through the chemo? For my part, anything that attacks the cancer and stops it spreading is surely worth trying, and the sooner the better, but does the NHS get annoyed with breaking their procedures or protocol in case they have to pick up the pieces? Would they only consider this when my PSA is rising and treatment failing after further rounds?
Is PSMA PET scan for suitability obligatory? I read on a thread that someone is getting one done at the Marsden to assess suitability for Germany and wanted to mention this for referral if possible, or know how to get one by paying if not. If you are suitable, will they refer to Germany, and who pays? Is the Royal Free in London recruiting? I'm lucky enough to be able to afford the treatment in Germany, but not sure where to start. I'd appreciate any advice from this knowledgable community, and hope to be around for a good while to contribute.
Thanks for any input.
Cheers,
Tony
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Tonyliv
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Hey Tony, I will be following your post and replies as I too am interested to know this Teletium treatment. I hope Raúl80 will be able to expand on his experience and connections info (German facility nd doctor he dealt with).
Here is a link to the initial scientific articles I read before going to the TUM in Munich in 2016. I promise I will update the information until 2018 soon.
There is a lot of basic and clinical research behind these techniques. These studies has been going on for more than 1o years in Europe, Asia, Africa and Australia. We just are starting, and probably more than 10 years behind.
Gallium 68 PSMA Pet /CT studies and Lutetium 177 PSMA treatment for cancers PSMA positive are going to revolutionize the diagnosis and treatment of PC.
Suppose your doctor thinks you have PC. GA 68 PSMA study will give you the diagnosis, location and if it is confined or already has expanded. outside the prostate.
The limitation is that there are cancers which are PSMA negative. If the study is negative a multiparametric MRI can be done and the information about the cancer in the prostate can be obtained. Biopsies can be done to confirm diagnosis and grade the disease.
Let's assume again the GA 68 PSMA test is positive, The cancer is in the prostate and there a few nodes in the pelvis. No surgery in this situation, IMRT exactly planned to the lymph nodes and the prostate can be done. So many errors and atrocities of the actual treatment could be avoided.
GA 68 PSMA is positive and there distant metastasis , so you are possible candidate for Lutetium 177 PSMA treatment. May be it will be only this treatment , may be it will be better to associate it with ADT usin lupron or similiar and abiraterone.
Nobody knows at this time , but this is the future. Ga 68 PSMA, multiparametric MRI, Lu 177 PSMA treatment.
The present is that if after a positive Ga 68 PSMA if you have metastasis you are a candidate for Lutetium 177 treatment. They offer up to 6 treatments and most of the metastasis can be improved in many patients. Until more information is obtained this treatment may be combined with ADT, abiraterone, chemo etc.
If you think about you may start realizing why we are so much behind in this subject. If this work, and it is working at least in 7 countries, will have less prostatectomies, may be less lupron or similar, less abiraterone, less enzalutamide, less chemo, less radiation, and no radium 233 treatment.
For me it was a paradigm changer. In 1 month, with only one treatment I went from metastatic disease to non metastatic disease.
The treatment is an IV infusion during 1 hour. No side effects except in patients with large amount of bone metastasis. In these patients the beta radiation from the Lutetium 177 may affect the bone marrow, but I believe it is less than any chemo.
I will post more articles. I know the Germans at Heidelberg have a new ligand that is metabolized in the liver and it is not eliminated by the kidneys, so the diagnosis with the Ga 68 will be even more precise. If they use the same ligand with Lu 177, I think it will be possible to do more than 6 treatments.
The centers in Germany are in Munich (Technical University, Ludwig Maximilian University), in Heildelberg (pioneer place), in Bonn and in Bad Berka. Look at the articles in the link.
A Google search will give you more information about the centers in these places. I f you need more help I have contacts for each one of them.
" will post more articles. I know the Germans at Heidelberg have a new ligand that is metabolized in the liver and it is not eliminated by the kidneys, so the diagnosis with the Ga 68 will be even more precise. If they use the same ligand with Lu 177, I think it will be possible to do more than 6 treatments."
Raul, why the 6 treatment limit? Does it have something to do with the load on the kidneys?
I live in Canada so a similar health plan as the NHS in the UK. It all has to do with protocols. In Canada, the provincial cancer agencies will not pay for second tier drugs like Zytiga (abiraterone) and Xtandi (enzalutamide) until you become "castrate resistant". That means your PSA starts rising after being on hormone therapy for some time. In my case the hormone therapy (Zoladex) worked for 4.5 years before my PSA started inching up. When it went over 3.0 they started me on enzalutamide and my PSA dropped like a stone. You are still in early stages, only diagnosed four months ago, PSA dropping and responding well to Firmagon. Unless you have the money to pay for Zytiga and/or Xtandi (very expensive), I would get out and enjoy life and try not to worry. However, do monitor your PSA regularly.
As for Lutetium 177, it has not been approved in Canada or the USA. There are some clinical trials underway but few people on this side of the pond know much about it. I understand there have been some spectacular results in Germany and Australia but again, it has not been approved by the FDA or Canada Health.
Hi! Just joined this site yesterday! My husband has a Gleason Score 4+5, had a radical prostatectomy, had 40 radiation treatments, failed on Xtandi, failed on Zytiga, has been on Trelstar & Xgeva since June, 2013 & just had his second taxotere treatment yesterday. The first chemo session lowered his PSA from 27 to 24.62. Chemo & Radium 233 are his only treatments left with not much time extending his life from either treatment. I’m really interested in finding trials in the USA for Lu177 which seems to me a real possibility for him. Can anyone give very specific info where these trials are taking place. Also how could I get specific info on Lu177 treatments in Germany where he could possibly go for treatment. Thx ever so much. Hawkwoman76
First of all, I am sorry to hear about your diagnosis but happy that you got over the initial shock and want to do whatever you can to deal with this cancer.
I am glad you show a good response to Docetaxol treatment. Long may it last!
My husband, diagnosed in 2003, was on Docetaxol for two rounds and was then changed to Carbo Platin because of metastases in his liver.
However, before we considered Chemotherapy, we were looking into LU-117. It was easy for us in the sense that I am German and there was no problem whatsoever to talk to doctors in Germany.
I spoke to a professor at Universitaetsklinikum Muenchen - Munich - once about it and then made contact with the hospital in Bad Berka in East Germany.
We would probably have thought further about LU-117 if the liver mets hadn't been discovered.
As far as I understand, LU-117 is mainly helpful for bone mets. It was primarily given to people who had exhausted all other treatment options. And it is very expensive. Last year I posted a long article about it here, I don't know how you could find it, but maybe somebody else knows.
I'll try and dig the article out. I don't know if it is exclusively for use as a last resort, or if it could be used to attack the cancer after these first chemo sessions, at the PSA nadir, before it creeps back up and the next NHS line of defence kicks in with arbiritone, more chemo etc. I'll learn more from the oncologist and learn more in the coming weeks.
I went to the TUM and had 1 treatment. The Treatment cost around 12 K euros. I understand if this is consider expensive but it is very cheap if you compare with the cost of a hospital visit in the USA.
TUM is one of the best places since they have a ligand for PSMA LU 177 which is very small which offer an advantage. Doctors at William Maximiliam and Heidelberg they are also very good with this treatment, Heildeberg being the pioneer center.
The LU 177 treatment works in lymph nodes metastasis ( i am one example, only 1 treatment cleared all of my lymph nodes metastasis) and also for visceral metastasis, at least gut metastasis.
We are just 10 or more years behind
in reply to
Raul,
What is the "TUM"? After surgery, my path report revealed PC in 10 of 28 lymph nodes that were removed. We do not know yet if it is in any distant nodes or locations. My bone scan was surprisingly clear. I go back in a couple of weeks for a post-op PSA and a PET scan. If it is in distant nodes, I'd like to be able to have this "weapon" in my "arsenal".
Thanks in advance,
-Dale.
in reply to
Technical University of Munich.
Regular bone scans have a low sensitivity. 18 F Pet/CT they also have low sensitivity. 11 C acetate and 11 C choline PET/CT scans are better. The Ga 68 PSMA Pet/CT may be the most sensitive, locating metastasis when the PSA is 0.4 or higher.
Hi, how are you doing? We were considering this for my father. He has failed Xtandi, chemo, and has lymph and bone Mets. Just wanted some inform and actual experiences. The treatments are $9000 each and max only up to 4
Hi Melanie.. I am trying to get my dad from US to Germany for PSMA LU177 therapy. I contacted healthbooking.com to arrange that for me . I am not sure about the following:
1. They said usually one session/cycle is enough for most patients
2. Is healthbooking a reliable agent ? Is there any other way to go to Germany and arnage the hospital booking, arrangements, consultations and the whole treatment program?
3. I am thinking of University Hospital of Munich rechts der Isar.. is this a good place ?
4. I am also thinking of Dr Markus Schwaiger.. is he one of the best doctors?
Hi Tony I’m based in the Uk diagnosed last year you can see my diagnosis if you click on my name. I have an oncologist in Cardiff who has recommended I go to Germany for this treatment. It’s just deciding when to go? 👍
Hi Starting 2010.. please advise about your experience. My dad has the same condition. I need to take him to Germany . Did you take your dad to Germany? Did you use bookinghealth ? What price they gave you ? How many session did he need ? Any response ? How is he doing now ? How about follow up ? Any side effect or complications ?
Please share your experience in details .. it's a life matter . I am sure you understand. Many thanks
You do not need a doctor referral. I wrote them and I explained in detail my clinical situation and requested to be treated under the German compassionate use of experimental treatments. I was accepted at Bonn, Bad Berka, TUM and Ludwing Maximilian.
They offered up to 6 treatments (the limitation is the amount of radiation to the kidneys) but you may only need one or 2. I required only 1 since my metastasis were gone after the first treatment.
The cost is around 12 K euros. There is not language barrier with the doctors since all of them speaks excellent English (better than my spanglish).
If you have castration resistant PC, there is a clinical study going on at UCLA. I have info about the contacts.
My husband has a castration resistant PC. We live in San Diego. Can you send info on the clinical study going on at UCLA & any contacts you might have? Thx!
Raul.. to whom did you write ? How did you arrange for the whole program, travel and treatment?
How are you doing now ? Good response? Any side effect experienced ??
Please advise .. many thanks
in reply to
You do not need a doctor referral. I wrote them and I explained in detail my clinical situation and requested to be treated under the German compassionate use of experimental treatments. I was accepted at Bonn, Bad Berka, TUM and Ludwing Maximilian.
They offered up to 6 treatments (the limitation is the amount of radiation to the kidneys) but you may only need one or 2. I required only 1 since my metastasis were gone after the first treatment.
The cost is around 12 K euros. There is not language barrier with the doctors since all of them speaks excellent English (better than my spanglish).
If you have castration resistant PC, there is a clinical study going on at UCLA. I have info about the contacts.
My husband & I live in San Diego. He has advanced prostate cancer & has failed on everything. Only taxotere & radium 233 are left for him. Can you please tell me more about the clinical trial in UCLA? Thx! Hawkwoman76
Read your bio, great to make contact. In the same boat - what to do, or when to go. As I understand it, I need the PMSA test first, to assess suitability - whether I pay or try for a referral; then it's when and where. I'm just trying to get ahead of the game, deciding if it's best to leave until PSA starts to creep up, months or years in the future; do it shortly after the chemo ends, or even do it at all. I'm on my chemo treatment until May, which will hopefully give me a PSA nadir, will chat to the oncologist, and so I've got some time assess. Please keep me posted on your choices and progress, and good luck.
Hi my treatment is going well my PSA is currently on 0.01 so I’m hoping for a long time before creeping up, like you I’m trying to be proactive and build a treatment plan ready for the next stage. I’ve been in contact with a clinic in Germany and I’m leaning towards waiting until the PSA starts rising. Hopefully we should both get many many years out of our treatments before we need to visit Germany. but I’m willing to try everything. Keep me posted on how your going. 👍 I also wanted to say that it’s been a year since my diagnosis and it has gotten less scary. I researched everything and follow a healthy organic diet, stay fit and do light weights to counter balance muscle wastage from the hormone therapy. I met a man in the waiting room at my clinic diagnosed young with prostate cancer which was metatastic to the bone and lymph and he had 16 years before his PSA started to rise. We are all so individual. There are men on here who have aggressive cancer who are smashing stats some still here posting 20+ years. You have lots to be positive about, a huge amount of money being poured into research, new medications, and finding your cancer whilst there is still time to treat. Welcome to the site you are among friends who bring together treatment options worldwide. 👍
Deocetaxel and ADT combo seems to be more or less as effective as Zytiga+ADT as per CHAARTED and LATITUTE. There have been studies where they combined Rodium-233 with Zytiga, and they had to stop the clinical trial because of the side effects. So I'd advice a little caution adding Lu-177 in addition to what you're taking now - if that's what you meant in your original question.
Given your age, and the aggressiveness of the cancer, I highly recommend a genetic profiling. It's rather inexpensive. Based on the results, your treatment route after docetaxel may be completely different from what you're envisioning now (targeted gene therapies).
Hi ive had two LU 177 injections in Australia through theranostics- its a lot more affordable than Germany in Aus. My PSA has been stable now for 3mnths, as has the bone cancer and the cancer in the prostate and surrounds has retreated. Ive had some bone flare- pain- which ive managed with pain killers and it dissappears after a few weeks cheers
Hi Jonny, I'm meeting with Dr Nat Lenzo from Theranostics next Monday, would it be OK if I sent yuou a PM to discuss your experience? Cheers Paul (Perth).
Hi Jonny, I had my first LU 177 a month ago through Theranostics in Sydney. My PSA has gone up in the month at my doubling rate of 4 months from 2 to 2.5. I will have a Skype call with Dr Lenzo next week. Did you have any improvement to your PSA after your first treatment?
Yes It went down from 290 to 190 and has continued to slowly fall. Like all treatments I suppose it different for everyone and although I had some bone flare pain it stopped the cancer dead cheers Jonny
Hey Tonyliv:
This reply is the same I gave to Cmrdata,:
Here is a link to the initial scientific articles I read before going to the TUM in Munich in 2016. I promise I will update the information until 2018 soon.
There is a lot of basic and clinical research behind these techniques. These studies has been going on for more than 1o years in Europe, Asia, Africa and Australia. We just are starting, and probably more than 10 years behind.
This is my personal Google drive, so is safe:
drive.google.com/file/d/1HG...
Gallium 68 PSMA Pet /CT studies and Lutetium 177 PSMA treatment for cancers PSMA positive are going to revolutionize the diagnosis and treatment of PC.
Suppose your doctor thinks you have PC. GA 68 PSMA study will give you the diagnosis, location and if it is confined or already has expanded. outside the prostate.
The limitation is that there are cancers which are PSMA negative. If the study is negative a multiparametric MRI can be done and the information about the cancer in the prostate can be obtained. Biopsies can be done to confirm diagnosis and grade the disease.
Let's assume again the GA 68 PSMA test is positive, The cancer is in the prostate and there a few nodes in the pelvis. No surgery in this situation, IMRT exactly planned to the lymph nodes and the prostate can be done. So many errors and atrocities of the actual treatment could be avoided.
GA 68 PSMA is positive and there distant metastasis , so you are possible candidate for Lutetium 177 PSMA treatment. May be it will be only this treatment , may be it will be better to associate it with ADT usin lupron or similiar and abiraterone.
Nobody knows at this time , but this is the future. Ga 68 PSMA, multiparametric MRI, Lu 177 PSMA treatment.
The present is that if after a positive Ga 68 PSMA if you have metastasis you are a candidate for Lutetium 177 treatment. They offer up to 6 treatments and most of the metastasis can be improved in many patients. Until more information is obtained this treatment may be combined with ADT, abiraterone, chemo etc.
If you think about you may start realizing why we are so much behind in this subject. If this work, and it is working at least in 7 countries, will have less prostatectomies, may be less lupron or similar, less abiraterone, less enzalutamide, less chemo, less radiation, and no radium 233 treatment.
For me it was a paradigm changer. In 1 month, with only one treatment I went from metastatic disease to non metastatic disease.
The treatment is an IV infusion during 1 hour. No side effects except in patients with large amount of bone metastasis. In these patients the beta radiation from the Lutetium 177 may affect the bone marrow, but I believe it is less than any chemo.
I will post more articles. I know the Germans at Heidelberg have a new ligand that is metabolized in the liver and it is not eliminated by the kidneys, so the diagnosis with the Ga 68 will be even more precise. If they use the same ligand with Lu 177, I think it will be possible to do more than 6 treatments.
The centers in Germany are in Munich (Technical University, Ludwig Maximilian University), in Heildelberg (pioneer place), in Bonn and in Bad Berka. Look at the articles in the link.
A Google search will give you more information about the centers in these places. I f you need more help I have contacts for each one of them.
Very interested in Lu177 for my husband who only has chemo & radium 233 in his arsenal of weapons & they only extend his life in months. Could you please repost the link to the articles you read before you went to TUM. Many thx! Hawkwoman76
Many thx starting2010. Do you think it is ok for me to contact Jeannine Gartmann. My husband just had his 2nd taxotere treatment yesterday & this is the time, days 2-8, when he is in the most pain. I said I would take it upon myself to really look into Lu177-PSMA. At this point in his disease he doesn’t think he is going to live much longer. I want to do everything I can. Thx again!
Tony, I was 66 and in great shape. August 16 was having trouble taking a deep breath pain in rib cage area, wen5 in for a annual blood panel. Came back that day with the alkaline level off the scale. I had been going to a urologist for 20 years every 6 months , hard spot on the prostate but PSA was staying down around 3. Last one was April of 16 , August of 16 was 39. My doctor started with 6 rounds of Chemo, with a nuelasta shot the day after . With a lupron and Xgeva shots monthly. When we completed the chemo December of 16 he put me on Xtandi 4 pills a day , and stayed on the lupron and Xgeva, PSA is staying at .005 since chemo. Effexor for hot flashes and mood swings ,glucosamine and calcium for the bones.
Guess I should have started with the scan results. Lymph nodes were all cancerous , bone mets and spinal met.
As a matter of fact in januari the degarelix was started by the end of januari. The chemo therapy is not started for the moment, appointment next week; but for the moment I will cancel this appointment.
In the first place the procedure with chemo undermines your whole system. This kind of treatment is based on a CHAARTED and STAMPEDE trial.
In 2017 (ASCO) there was a presentation of a trial fase III of Latitude and Stampede, instead of using chemo, they used ADT (degarilix) and Abiraterone; the outcome of this study was even better than the one with the chemo. Taking a few pills (with nearly no side effects) or chemo (very toxic), the choice is made quickly. By the way, chemo is working against rapidly dividing cells, even a Gleason 9 is not that quickly; the only respons you have is on the cells that are not hormone sensitive.
Past week, I went to Aachen for a PSMA PET/CT-scan using Ga68 (Gallium). The cancer was highlighted, this means that my cancer at least react on the protein PSMA. Next Tuesday an appointment with professor Mottaghy (RWTH Aachen), perhaps the best option is to use the Lutetium 177 PSMA 617 in the first place. And as mentioned in the first meeting, if the cancer becomes recidive you can use the same procedure again (and over again). Why using this lutetium in the first place, for undergoing this procedure, they will test the working of a few organs like the kidneys etc. If you are going to the normal/standard procedure, perhaps at the end you are not fit enough anymore for the PSMA-procedure.
I also want to become a meeting in Heidelberg (University Hospital), next to the lutetium they are also using actinium with very good results. My procedure is going on.
Also look on the “Vitus” website; they operate with IRE (irreversible electroporation).
You say we have a number of drs using Lu177 in the states, but don’t have enough info. How can I find out where these drs are located. Thx so much! Hawkwoman76
Hi Tony. Fellow brit from Nottingham but living in California for 15 years. Was diagnosed December 2015 with a 212 psa. Started chemo right away with Lupron every 3 months. I also take 4 Zytiga every day for last 8 months. Averaging 0.9 psa for 5 months now and prior to that has been below 3. Don’t worry about the future focus on today and enjoy the family. I still play squash but nothing like the level I used to play. Stay strong buddy.
I have just signed on to a phase 1 dose escalating trial in NYC. They get the LU-177 from Germany but Dr. Tagawa said he will dose it three times what they're doing in Germany. If they don't find any exclusionary reasons I'll start in two or three weeks.
Can you send trial info to me, i have emailed and called both Arizona and NYC- no response yet there must be a long line of people trying to get on trial. Please let me know how your doing.
I am trying to enroll my dad in Vision trial now . Do you know about the cost of services during the trial? How did the trial result go ? Please advise. Thanks
Cladius...I don't know if the phase one trial is still accepting, or if it's even working. I'll get some idea later this week and scans in about three weeks. It's easy to call or email them, but I'm sure if it's worth anything there will be on going trials Phase 2, maybe 3.
Thank you so much for your kind reply . I actually emailed them last week and no one replied ! Would you be able to ask them for me please if they would still accept participants ? Many thanks
The trial is not randomized at least not yet. It's a dose escalating trial consisting of two treatments. I've completed the trial and will have scans in a couple of weeks. As for side effects I didn't notice much after the first treatment...maybe the fact that I passed two kidney stones (one from each kidney) while waiting for the second dose. Kidney stones are really painful and tend to block out everything else. After the second and final treatment I had some nausea and for a week or two some pretty hefty fatigue.
Wrando.. thank for your useful info. Lauren answered me this am and she think that dad has to see one of the consult doctors. I will start working on that. Please post the result of your scan after few weeks. Really wish you the best and hope this treatment will cure you and all other people . Many thanks
Wrando.. did you have to check yourself with your insurance company about other costs not covered by the study sponsor ? Or did they check about that? Did you need to pay anything out of your pocket or copay ?? Please advise.. thank you
No...the vast majority of costs are covered by the trial's sponsor. Medicare and AARP supplemental probably weren't billed for much if anything...possibly the initial consult left me with $33 not covered. Even if you don't have good insurance your costs are minimal.
I am trying to compare between PSMA therapy in Germany and the trial in Weil Cornell Center -Dr Tagawa.. they are almost the same . The German give 2 cycles initially 6 weeks apart and Ga PSMA PET scan 4 weeks after 2nd cycles to assess response and they may continue up to 6 cycles .
Dr Tagawa trial gives 2 cycles 2 weeks apart and repeat Ga PSMA Scan after 7 weeks I think but I don't think he will be planning to give more cycles if no satisfactory response?
I understand that you're going for Ga PSMA PET scan in few weeks , so do you know the plan after ?
Do you suggest treatment in Germany or to join the trial?
My dad is worried about the travel to Germany with ill health.
Also he has Medicaid only and not sure what will this insurance cover ?
Hi Wrando.. so we finally chose to go to Weill Cornell Center to join the trial .
We are scheduled to see Dr Molina next Tuesday.. what to expect in that visit ? And how long will it take?
Also Medicaid does cover n New York as my dad does not live in NY so we will self pay for this first visit and we have to switch to Medicare .. any idea how long will it take to switch and be approved for Medicarr ?
Also what hotel do you recommend to stay while being there ? What about rates ?
I wonder if we can get something easier to communicate as I feel that we will need more info and advices from you then .
Randomized 2:1 there is a 66% of getting in. No placebo. As my father was lucky enough to be PSMA positive and get chosen into the treatment arm. Similar to university of Heidelberg. Constant dose given over 4-6 treatments. You first have to find out if you PSMA +
The histopathology is PSMA positive and if the PSMA PET scan show PSMA expression it means that the patient is PSMA + but in those 3 locations, it's a matter of chance ( draw) to be among those who would receive the Lu177 and that's one of the reasons we chose NY trial .
Hi, I messaged you some additional info. I wish you best of luck.! Tomorrow will be my fathers first dose of Lu-177 i will keep all of you updated on the process. He currently is getting a bone/CT scan today.
Had my PMSA G68 scan; only a small pick up in the bone metastasis, so chances are LU-177 would not be very effective for me. Different choice for others. I’ve decided on the Abiraterone route a fortnight ago; having good response, will run with that for a while.
Things have moved on the last year, with trials being developed and actium 225 promising to be even more efficacious. I’ll be asking my oncologist in March when best to introduce it; generally, you can’t do both, so I’ll either wait until the cancer starts becoming resistant to Abiraterone, or have a holiday while LU177 or Act 225 is introduced.
My thinking is is if the metastasis was reduced, would that help the Abiraterone keep it in line for longer? Anyone with experience in this area?
I am mCSPC for27 months now. Lupron and chemo brought my PSA down from 255 to 0.7. Added Abiraterone and it went undetectable.
I have decided that I want this treated aggressively. I've had one large metastasis radiated (not standard practice because I had more than (3? 5?) metastatses). Prostatectomy, again not advised in metastatic cases. Prostvac, Provenge.
I am currently on bipolar androgen therapy ("BAT") -- boy does it feel good to have some testosterone.
Next thing I want Lu 177. For various reasons I only want one treatment. Problem: It's almost impossible to get a Ga scan anywhere. UCLA is the best bet for scan. I'd probably have to go twice -- once to see the Dr. writing the order and again for the scan. Then I go to Heidelberg. Thinking about it that meant I had an 85% chance of doing two round trips to LA and then go to Heidelberg. OR, I can just go to Heidelberg, get scanned there, and take a 15% risk that I don't receive treatment, which is what I want to do.
Any info on how U Heidelberg Hospital operates? I know it's a great hospital but I don't know anything about their administrative/other things. Specifically is it a reasonable expectation that I could go to Heidelberg, get the Ga scan and if I am eligible get the Lu177, get it a couple of days after. I really don't want to go twice and I don't feel like spending time overseas waiting.
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