I'm new to this site. I'm a 49 year old from Denmark. I was diagnosed at 42 with bone mets and a psa of 1700. Been through Zoladex and Xtandi and have now had 3 treatments with lu177 in germany at Bad Berka Zentralklinik with Prof. Baum.
I contacted both Heidelberg and Bad Berka, but chose the latter because they offered a shorter waiting time.
After first cykle in December I experienced a lot of fatigue and bonepain in my mets. I've had no problems with salivary glands at all. I didn't have much side effects after 2nd and 3rd cykle. My psa dropped from 956 in December to 76 in April. My overall energy has improved as well as my appetite (gained 5 kg) and i took up sports again. But the scans are not as impressive as psa drop. But at least no new mets and resolution of some bone mets.
Now Prof. Baum suggest combining it with ac 225 and do a new therapy in July to see if we can get a bigger response. He seemed surprised of my dramatic psa drop that didn't mirror the scans.
So fingers crossed.
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kludder
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In Bombay, where I have just started on Lu-177 they are not offering the combined therapy. They also told me that since Ac-225 is 100 times stronger than Lu-177, it made little sense to combine the two. The side effects of Ac--225 are apparently pretty bad especially the "salivary glands" bit.
Please keep us informed as to how your treatment goes and all the very best to you.
In Germany they often combine the two when there are bone mets. Yes, Ac-225 is stronger and causes more side effects, particularly a dry mouth. This will take several weeks to get back to normal, but after the first cycle it will not take that long. After several cycles of just Ac-225 without Lu177 the dry mouth may become permanent.
My salivary glands are actually in a little better condition than before I started the lu177 treatment... the Germans doctors did a scan of the glands before first cycle and after 2nd cycle.
So the doctor do not expect the combo with ac225 to cause big problems.
Thanks for the link. I think the idea in doing a combo is to 1) reduce the toxicity of Ac-225 2) Since Ac-225 is much stronger than Lu-177, increase the potency by adding Ac-225
Does anyone know in what ratio the combination is given ??
In the linked abstract it says: "2.0 – 7.0 MBq of Ac-225 and 3.0 – 7.2 GBq of Lu-177 were applied". I cannot tell how MBq of Ac-225 and GBq of Lu-177 compare. I know that the dose for Lu-177 is usually 6 to about 7.5 GBq. So apparently they reduce that a bit if combined with Ac-225.
More so, if you consider what I was given for my first infusion. I was given 200 MCi of 177 Lu-PSMA administered intravenously in 20 ml of NS @40ml/hr over 30 minutes. To me, this is Greek
Dr Baum at Bed Berka told me always start with one cycle of lu177 and see how the patients reacts in terms of side effects, before he moves on to the combo. Generally he seems more cautious than Heidelberg. He also did a lot of testing and scans of me, beside the PsMa scan, before he approved me as a candidate for lu177.
Hi this is just a continuation of the other thread I've posted but did you fail xtandi or continue it on whilst you received lutetium so are you running both together? my father has been on exactly same sequence as yourself zoladex and xtandi right up until day before lu 177 treatment three days ago- interestingly same side effects no dry mouth but nausea day 2 and fairly big increase in bone met pain day 3.
We're on 1st treatment lu 177 my take on technical uni munich is that they don't do the act 225 combo unlike bad berke and heidleberg they also give a max of two doses of act255 but only after they can gauge how effective the Lu177 has been.
Shoot I always thought Copenhagen comes in a can and is a brand of dipping tobacco made by the U.S. Smokeless Tobacco Company. But what the hell do I know?
This is something that concerns me, I have my last Chemo 3rd May and the blood numbers show good and PSA 1386 down to 0.4 but the pain hasn't let up. If it wasn't for the Oncologist saying blood numbers are good I would be thinking the Chemo isn't reducing the Mets.
Zeta - my recommendation is to hold your concern until a few weeks after chemo. Since your numbers are falling as expected, the pain is likely associated with the process of some of your mets dying - this can cause pain like any other tissue death. - Joe M
Yes the 2nd and 3rd I had a pretty good reduction in pain, the 4th session the pain levels increased and haven't let up since. I'm trusting the Oncologist and the blood numbers and just have to see what my next scan shows after Chemo is completed.
It's human nature to think the worst when small things don't plan out as imagined, I'm trying not to fall into that hole. It's this breakaway shooting pain and hitting me in the strangest places, from shin bone to wrist bone, sometimes just the once but mostly in the thighs, the cancer got right into the marrow here, the Doc assures me the blood numbers indicate the bones are not only winning the battle but also repairing themselves. I trust him.
One more round of Docetaxel to go, then Doc thinks I'll be good for around 9 months. Obviously will have scans after Chemo to check progress. This is my first treatment since being diagnosed in Nov. I'm on prednisone, 3 monthly injections of Diphereline, not heard this drug mentioned here, don't know if it's old, new, better or worse than other ADT drugs (I'm living in Estonia, Europe) they only offered surgical castration on Gov insurance, I opted and pay for chemical castration.
I was diagnosed 2009 at 62 with Gleason 9, but inoperable, cancer outside capsule Psa only 8.8 so low Psa for such an advanced PG tumor. No mets were found until 2016, after ADT suppression stopped, then Cosadex added, Zytiga, 5 chemos, and I got first Lu177 in Australia last November with Psa 25.0 My next no4 Lu177 is in a few days, but all soft tissue mets seem to be much less, and Psa is now 4.5. Docs have added enzalutamide, to make Lu177 more effective.
Side effects were minimal through all this because I got treated sooner rather than later for the mets et all, last scans looked OK, no new bone mets, but the existing bone mets just quit getting bigger, and once you have a bone met, then its size in an MRI or CT scan may not reduce much even though the Psa levels tell us that there is far less active cancer present. This is because bones are slow to heal, if they ever do, if the cancer is all killed. Cancer damaged bones may just attract calcium build up and the molecular structure is different to the outer layer of fibrous bone which is hard, but also with tensile strength. So the change of bone density and molecular structure at mets sites may show up in scans for a very long time, but if Psa goes very low, then those met sites may not have much Pca it any in them.
I have a pea sized met in pelvis just above right hip joint and another in femur below hip joint, and these have not yet weakened my bones much but they did cause significant inflammation of the hip joint so I had to stop cycling for awhile, but this last week I did about 100km and swam about 2km, so I am now going OK at 72. But the fight is not over and Pca will build up again and then then I have to try something else.
But you have got reduction of Psa by 1 / 12.6, a good Psa reduction, and there are fellows here who have had 7 x Lu177, and my doc said a German man has had 10 x Lu177. In Melbourne, there's a trial for men where Lu177 is used as initial therapy. It seems like your Pca had already spread at diagnosis so an RP would be of little value, and same for me, mets were there at diagnosis, just mine were all too small to be seen, and the suppression with anti hormone drugs just kept everything hidden because they are tiny. But they are alive, and grow slowly, and mutate as they do and the older a Pca tumour is, the more likely it contains several if not many varieties of Pca, so even if you manage to kill most with the beta particles from Lu177, there will be survivors, and these can be most difficult to kill with anything, and if they mutate to grow a whole lot faster than the initial Pca cells, watch out, because the medical system cannot apply the right chemo or other treatment fast enough, so whatever docs do is ineffective. I have ppl die after cancer just turns up in many places, with nothing to control it.
We had our first cool autumn day here after the first cold night, but I was able to analyze some electronics in my shed all day OK.
Again thank you so much for posting this information. I live in the USA and this Lu 177 PSMA appears to not have been approved here yet. I am dealing with a newly diagnosed metastatic, CT just showed not in the soft tissue. Gleason is 7, most recent PSA is 126, up from 5 three months ago. I am meeting with doc on Monday to discuss treatment, she has leaned toward chem vs. radiotherapy because of the possibility of cancer having a high metastatic burden versus the low metastatic burden. And because of your post today, I am ecstatic that my second opinion will be from an Aussie practicing here a USC in Los Angeles. My daughter lives in Sydney and if this Lu 177 is only available there (besides Germany), I will go there. Sounds like the Lu 177 is the type of aggressive treatment I need. Not sure if the chemo is best first option, but now that I am empowered with your information. I have other choices. I started casodex 14 days ago, and had my first Lurpon injection 5 days ago. I am 62 years old and am shocked that my first diagnosis is stage IV.
Thank you again for any information you share on this. Cheers!
I cycled the 42km OK, longest ride for 2 months with much improvement possible. For first 20km I rode as hard as possible with M and F about 35 chasing me hard, and then I faded a bit, and they went past me up a hill.
I have no permanent dry mouth troubles yet, Ac225 will definitely give this I am told, but so what, I know guys whose saliva glands are damaged permanently by IMRT to cancers in their neck region, and they manage with a special chewing gum and a bottle of water. But hey, they are alive, they have not been forced to un-exist, and they live in Oz, a good place better than so many others, so what's the big deal here?
As I may have mentioned, Lu177 was first used on end-stage patients with nothing to lose. There are / were thousands of them, and chemo often just does not work well on bone mets.
Well after observing all that's happened over last 10 years since Germans developed the Lu177 idea, a major hospital is doing a trial for using Lu177 as early primary therapy, which makes much sense for men who have many mets at diagnosis. Where many mets exist, and RP merely reduces the bulk of the tumour load but does nothing to get rid of the mets, and there can be countless mets, even when only one or two show up in any kind of scan including PsMa Ga68 PET / CT which IMHO every man could have if his Psa < 5.0, but should have if his Psa > 100. I was diagnosed in 2009 with Psa only 6, but inoperable PG tumor, and so far, a succession of treatments has kept Psa < 50, and kept my quality of life quite good. I don't care that All my sexual capability has been totally obliterated. I had no partner who would not have liked seeing our sex life ending. I enjoy a good bike ride, or a good day in the shed tinkering, and I like classical music from FM stations on radio. I don't want to travel, I don't want or need a Mercedes Benz, an old bomb Ford Laser from 1986 is till going well. It would be nice to have a female partner, but marriage should be between equals, so if she had all her fun bits removed then we'd be equal. But it seems to me most ladies of 72 cringe at the idea of companionship with a man. Its OK, nature is nature, eh?
I read that the Peter Mac Hospital in Melbourne were due to begin a trial of Lu177 for initial main therapy for Pca. I don't know the complete patient criteria to be able to get into the trial, but from what I read moments ago its for men who are extremely likely to have Pca advance after an RP or other existing therapies with ADT + EBRT. I would have benefitted hugely from this treatment if it had been available here because I had an inoperable Gleason 9 with 9 live biopsy samples in 2009 at age 62. Researchers want to find out if the Lu177 will not only kill Pca cells in and around the prostate gland, but also those that have spread and which may not be large enough to show up in the PsMa Ga68 scans. For Lu177 to work, a man's Pca must have high enough PsMa avidity. The trial is a Phase II type, and Peter Mac has just received
$4million research grant for the trial to begin this year, but I don't know when exactly, but after my diagnosis in 2009, I think Lu177 would have been a benefit at any time afterwards.
The researchers would be asking if there are Pca cells which survive the Lu177 treatment, and are not PsMa avid and whether they will be just as dangerous to long term survival. Read more about this at
Lu177 has not been approved yet in any Phase III trials here. But for those whose Pca treatment has failed, they are free to buy whatever they want - fried cane toads if they think this would kill Pca. This means that Theranostics Australia is legally able to operate here without the Phase III approvals so Dr Lenzo and his team is free to offer help to many who would otherwise face death soon after chemo which my oncologist said does not work well for Pca bone mets.
In a younger man, the risk of early Lu177 may be onset of leukemia at an early age, but I am now 72, and not too worried about what shit might happen if I live to 92; I think Pca will have laid me low before then. Survivor Pca cells have a nasty habit of mutating after any specific treatment and these can become resistant to any known treatment. They can also suddenly much increase their doubling rate which then does not allow any treatment to be applied because all treatment takes time to work. Peter Mac have done other Lu177 trials beginning in 2016 on end stage patients, with some dramatically good results, but not for all men in the 31 men in the trial. Researchers want to know why, and how to make the Lu177 more effective. A doc here at St Vincents in Sydney has just got a grant to see if Lu177 + Enzalutamide works better than Lu177 alone, and in my case I had this Dr Louise Emmett administering Lu177 to me on my 3rd Lu177 shot, and she is a brilliant researcher in cell behaviours, she kinda knows that Enzalutamide makes Pca cells express more PsMa avidity so more Lu177 adheres to Pca mets so the dose of Lu177 becomes much more effective. So I am actually having her trial idea applied to me, and I don't mind the experiment.
Cosadex and Abiraterone failed in 6mths and 8mths and docs are not allowed to switch to try Enzalutamide, because most men don't get any benefit. But after Cosa and Abi, and docs suspect chemo makes the Pca cells sensitive again to these chemicals, and so now a question remains, how long will they keep me on Enzalutamide ?
It depends a bit on luck and so far, Psa drop has been from 25 before Lu177 to about 3.7 now, a few days after my 4th Lu177 dose which should be a real knockout blow to Pca because of Enza presence. But the effect of Lu177 is never permanent because its half life is a short time, so what happens when my body pisses out all remaining Lu177 that has become non radioactive? One say many still living Pca cells have become so damaged they can't replicate, so they just die. But I have heard that idea before; docs in 2010 said the 2 years of ADT with 70 Grey EBRT would work well, but no, my Pca was hardly affected by the EBRT and after pausing from ADT after 2 years in 2012 my Psa lept from 0.08 to 8.0 in 6 months, and I begged the urologist to transfer me to an oncologist to "see me out" because I could not see that I had much time left. But then I went back to ADT, and with Cosa and Abi I kept Psa down, and with chemo failing I qualified to buy Lu177, and it had become available in time to buy in Sydney, only 300km away from where I lived. Its aud $40,000 approx plus PsMa scans, and I still don't know if I'll die next year or year after. I never can say when I'll die.
But I do see the storm clouds. Pca has a nasty habit of creating false hope where a man sees his Psa noze dive to very low levels, then rise back up again, over a time or weeks, months, or years, and then maybe what he ends up with is Pca that does not make Psa, and can only be seen in expensive scans, and this is often the killer type of Pca cell.
If you live in Germany, and you need to be in Australia for the 4 standard doses of Lu177 given at 6 to 8 week cycles, then your travel bill will be a Royal PIA, but if that's what you can afford, then go for it. Trying to live in Oz for the 6 months might be more difficult and expensive.
Of course in this age of Internet communications, one might think you should be able to stay in Germany while having Lu177 from a local supplier in Germany, and while being supervised by Australian research team in Melbourne, with Skype consultations similar to what I have had with my Dr Lenzo here, because he lives in Perth, and flies between Perth and Sydney to see his patients.
You could always put this idea to the researchers.
Anyway, Melbourne has nice classical music concerts at night and is a nice city with very good places to eat. So afaiac, come over and get fixed up if you want. Between Lu177 doses, you will be fairly well, and able to travel about to explore our country if you want. Good Luck,
Wow thanks Patrick for all the information and the time you took to write your reply.
Haha, despite the name, and while I am originally from Germany, we actually live in OZ - in Darwin in fact. That’s why I was asking about the Lu 177 trial as an initial treatment. I expected it was at Peter Mac but hadn’t read about it.
Can I ask who is your MO? Where is she? St Vincent’s? Thanks for information.
Well, that does not matter because everything I write is not completely aimed at giving you an answer, but I try to answer other readers.
Last Friday, at my 4th Lu177, there was an Australian from Wollongong and myself plus two American guys who were flying over for each shot. I can't think of why any German would come here, because the Lu177 idea was invented in Germany, where they have been doing it for maybe 10 years. One man has had 10 shots of Lu177.
Melbourne is a cold hole compared to Darwin, so bring the winter woolies.
My husband went to Heidelberg in the fall, getting both Lu-177 and Acc-225.
Here's a link to a 2017 article by the Heidelberg group that lays out their thinking about the combination: jnm.snmjournals.org/content...
For the first cycle he received: 5 MBq Ac-225; 1.2 GBqLU-177
For the second: 4 MBq Ac-225; 4 GBq Lu-177
In his case, the cancer response was minimal: two mets to the ribs did seem to "resolve," but not the mets to the thoracic spine. And while the PSA declined between the first and second treatments, it went back up before the second. Dr. Kratochwil said that was not unexpected. He did not get much decline from the second cycle.
In all fairness, the folks at Heidelberg "reluctantly" offered the treatment, as there was not much expression of PSMA. The scans one sees of men who got spectacular results from the treatment seem to have mets throughout their body prior to the treatment. My husband only had visible mets in his thoracic spine and ribs. (We went to Germany because he had exhausted pretty much everything here in the US, other than chemo which he did not want.)
The other consequence was that the treatment did "blow out" his salivary glands. Dr. Kratochwil said it would take at least a year before we'd know if any would regenerate. (There was some impact after the first treatment; significant impact after the second.)
After reading articles about PSMA expression, his certainly was on the low end. We don't regret having gone to Germany, but now better understand why he was not a good candidate for the treatment. It's still early days for Lu-177 and Ac-225. Those who follow will benefit from what is being learned now.
Afaik, the general mean life extension is 14months. But those who come early when Psa is low, and maybe they get more time benefit than someone with 3 months to live and Psa 1,000. Life is kinda unfare, no?
But Nature takes its course and the doctors can only do so much delay things. Patrick Turner.
Hi Kludder, nice to see someone else from Europe on this site, though not nice in the way that you have this disease. I too experienced a big drop in my PSA after treatment with Taxotere and Xtandi, but the PSA went up again after 3 sessions of Taxotere(each being 3 treatments), and now I will start Jevtana next week. Once this stops working, there are testosterone injections, and then not much left. Sorry for the cluttered mail, but I have been on pain killers, Oxynorm, which upset the system somewhat. Hang in there and treat each day as a good one, unless it was really shitty. Tomorrow is another day. Take care, Clemens
I am trying to get my husband treatment with Lu-177 PSMA treatment from Dr Baum - we r from Canada. 1) What is the easiest way to contact them to get it set up?
2) How do you get there - ie where to fly into and then how to get to Bad Berka
3) Can you go into get medical treatment with just a passport or do you need a special visa
4) Did you get the PSMA PET Scan over there
5) How long did you have to wait to receive scans/first treatment after making first contact
6) What documentation do they need to agree to treatment?
I contacted on mail and phone 10 times before i got an answer. Just kept on until they answered. Contact Sabine Seifert, who is in charge of the international clients.
Did the PsMa at local hospital before and they requested some journal documents, blood labs and other information, which I send by regular mail (very old school)
I flew to Frankfurt and rented a car and did the 3 hours drive. Bad Berka is basically in the middle of nowhere.
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