I'm curious if any people on here have explored either the German clinic route with hyperthermia, Vit C etc.. or the specialist treatment Lu177 that seems widely available in Germany. I'm looking into both even though I just started on Enzalutamide (2-3 weeks in.. no idea if it's helping yet).
I'm 50, diagnosed in Aug 2017 with seemingly aggressive (no biopsy, just PSA doubling time), androgen resistant stage four PCa (extensive mets through pelvis and spine). Lupron since Sep. No chemo. My bloodwork has been worsening in past 2-3 months - PSA skyrocketed way past 60 a few weeks ago and Alk Phosphates are very raised which has worried oncologist at Cheltenham in UK.
Currently hoping to go to either Klinik St George or Klinik Marinus Am Stein, both near Munich, but really have no idea what results I could expect iun terms of improvements - they both treat a lot of PCa patients. Despite all this my day to day health and mobility are at the moment not too bad.. continual poor sleep is probably the worst thing. Want to take action very soon to try and knock this thing back if possible. Lu-177 seems very interesting but no idea how to figure out if I would be suitable for that.
I feel I've had a background health issue that potentially kickstarted the PCa - strongly suspect it's related to mercury (amalgams) toxicity and mold. Wondering if there's possibly a clinic that might be more up to speed on such aspects (functional medicine testing, detoxification etc).
Thanks all!
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Sriyantra
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There was a retired MD here that went that route and he reported successful Lu-177 treatment. He has since went underground, changed his ID to Unknown. I wish he would stay around and keep on contributing. If you look at my previous posting, I think I copied and pasted his posting as part of my response to someone else here.
Sriyantra, I can't speak about the hyper or Lu177. The hyperthermal treatment was an exciting idea several years ago, but I haven't heard much since. the Lu177 seems to be new. I wanted to comment about your concern about mercury. I searched that thoroughly years ago and it's just not a factor. Please don't let such side paths detract your dad for his main objective.
Lu177 goes into a world wide clinical phase 3 trial in June. My understanding is all German facilities are stopping compassionate Care and participating
Lu-177 is available at the clinics in Munich but you will have to have permission from your doctor to send all your history to them. I found here in Australia Theranostics will only treat you if your psa is doubling & out of control,which makes sence as it is radiation & expensive at that & three treatments are given every eight weeks here.
My little trip so far is wate & see as i will not have the lupron injection after going to sleep at the wheel of my machine so on cosudex only & psa tests.
Good luck with your trip with this hidious desease!
Hello THE Don,yours is the first message i have received on this forum in 4 months so i hope now im in again?
In reply i would add that i can not have Lutetium 177 any more due to side effects almost crippling me or maybe the Galium 68 scan? I will never know so start casodex again,3 months off & 3 on then look at xofigo & become a vegetable again.
Yes, my husband and I have explored the Germany clinics and particularly the ones that offer LU177 last year. We are living in Ireland but I am German and so it was easy to get all the information directly from the consultants at the clinics in Bad Berka and Munich. However, we didn't go ahead because it was discovered that my husband had mets to his liver which needed urgent treatment with Chemo; we wouldn't have risked going to Germany for this very expensive treatment because they said it would work mostly on bone mets but his real problem is the liver.
The treatment is very, very expensive. I think they told us at one point that if we did four cycles of LU177 it would cost up to 40.000 Euro. We don't have that money. And waiting for the health insurance to confirm if they would pay for it was not an option.
My husband is now on Chemotherapy and I honestly think we will never try LU177. As I said, the problem is the liver and not so much the bones.
I would encourage you to go ahead though, particularly if you want to do it mainly for bone mets.
My husband was close to your age when diagnosed in 2013 - with a similar profile to yours - gleason 4+3 - bone metastases. We were living in Bath at the time.
He went to Dr. Hembry in Bristol who recommended Ben Pfeifer (the Pfeifer Protocol) who works out of Switzerland. He is an MD/PhD who was the head of prostate at Memorial Sloan Kettering for years before returning to his native Switzerland and opening a clinic. aeskulap-international.com/...
He had great success on his protocol for a time. Is now considering going to Switzerland for hyperthermia in combination with other therapies.
The PsMa Ga68 Pet / CT scan is usually needed before having Lu177 or Ac225.
But just accept the enzalutamide if its working, and if you have Lu177, then its supposed to be more effective when you are on enzalutamide, and a trial in Australia is now seeing if that's mostly true. If you are 50, the Pca can be more aggressive than if you were 70, so I doubt you can afford to dither about and I'd say you should consult the Docs at German clinics asap, and they should point you in the best direction. The Germans first devised the Lu177 Theranostic Treatment.
I have a few mercury + silver amalgam fillings but I doubt they have kick started my Pca. Its far more likely that my DNA was programmed to get Pca at about 57 not matter what my lifestyle or habits were. But I had low Psa, so not diagnosed until I was 62, when Psa was 6, and I had Gleason 9, and inoperable when docs opened me up. So since 2009 I have been fighting this thing and I had ADT and other hormone blocker drugs work until 2018, then I tried docetaxel chemo which failed, so I started Lu177 with Psa at 25, lots of mets in bones and lymph nodes, but not big mets. Psa plateaued, then dropped after No 3 infusion, and was 3.7 at last blood test. I've just has 4th Lu177 while on enzalutamide, and I discus latest Psa in 10 days, and PsMa avidity, and whether I need a 5th Lu177 shot to kill more cancer before it kills me.
So far, so good, seems like something is working but with Pca the fix is often only temporary and a man has to keep trying other things to hold it back and sooner or later the Pca may find a way of mutating around anything the doctors try. Well, sometimes a man gets a long time of reprieve from Pca progress, and that's what we all are chasing, to allow more quality of life. I have never ever known how long I'd live after diagnosis that was too late in 2009.
But I have had a good life over the last 9 years, and am now 72, and it might be nice to have a few more years, but Unkel Fate and Aunty Destiny may have other ideas for me. There can be a time when nobody can control Pca progress and its time to call it quits. I've always know that, and seen some men stay alive for 25 years after diagnosis so far, while others lasted only 3 years. I wake up at night to pee 4 times, and sometimes with hip pain but then I had EBRT to mets near the hip joint, and things have not got much worse, and I went to my good acupuncturist last Friday and that really made a big pain difference. I have some arthritis in hip, and some other problems in tissues there maybe because of past EBRT and additional salvation IMRT, so I cannot continue to cycle the 220km a week like I'd been doing from 2006 to early this year. OK, so I spend more time in workshop doing electronics, sit-down work, stops me going mad, and so I just have to cope with changes in my body that I can't control at all.
Things could always be so much worse. Think of Stephen Hawking, his life was in a wheelchair, and he would have had the best care available, but he had to cope with never being well for 40+ years.
So, just get whatever is the best treatment asap. Then maybe worry about amalgam toxicity. I smoked cigarettes in my 20s, until a GF said she hated the smell of me so I quit cold turkey. Smoking would have to have been far more toxic than amalgam. The GF still wasn't happy with how I was just me, and nobody else, no matter how good in bed I was or how nice and gregarious and faithful, and she vamoosed yet again around the world, being both vain and wild, and to me, toxic, but I needed no experts to tell me that sort of sheila was just another pest when the novelty wore off.
I have a good life now without any woman, and without any obvious contaminations from chemicals at work after 30 years as a builder. I just got DNA that was timed to give me cancer when it did.
So, I wish you all the best in seeking treatment to extend your life time.
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