My husband and I are leaving for Homberg to undergo one treatment of LU-177 treatment. We have chosen this route as we have sent our reports for 4 hospitals in Germany of which 3 responded that LU-177 would be recommended for hormone sensitive state. One hospital responded with recommendation for chemotherapy in early stage as my husband has soft tissue metastasis in 4 spots (3 pelvic and one mediastinal). His PSA is 5.6 at this time and PSMA expression is good. We think we can pushm chemo and try Lutetium first. The doctors here in Canada recommend Xytiga. Mayo recommended Chemo. (opinions differ greatly.)
My question is that the doctor in Homberg has asked if we would like to add 2MBQ Actinium 225 to the Lutetium dose and we are unsure. This is still experimental and he thinks that we may not have to come back for a second round and possibly have longer remission time. My worry is that adding Actinium too early but exclude potency for other treatments 2-3 years down the road or may be too harsh.
Any thoughts on this?
Wife of Torontoman
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Torontoman
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Do you know what the dose will be for the Lu-177? Also, the AC 225 treatment has been effective but depending on dosing level it can destroy your salivary glands resulting in "dry mouth" is more serious than it sounds..
In the States, the "Vision trial" which uses Lu-177 (trial closed now) the participants receive up to 6 treatments with a dose of 200 mCi spaced 6 weeks apart. The last two treatments are sort of optional, depending on how the participant is holding up .. I have completed 3 treatments and so far my side-effects have been manageable..For me, the treatments have been very effective, but that's not the case with everyone..
You usually add Ac-225 when there are bone mets. You write that your husband has "chest nodes". If these are bone mets and not lymph node mets in the chest, you should get Ac-225. I know a patient who got two of these cycles in Homberg and he does not suffer from dry mouth.
Ac 225 is considered mainly when there are many bone metastases associated with bone marrow infiltration. This has to do with alpha vs beta radiations. Alpha particles have about 1000 times the ionization power of the beta particles but they travel a very short distant (0.1 mm) . Beta particles travel up to 3 mm.
If a patient has diffuse infiltration of the bone marrow beta particles will affect the normal bone marrow surrounding the areas of cancer (about 3 mm). This effect is less with alpha particles since they do not travel very far (0.1 mm).
If he has soft tissue (lymph nodes) Lu 177 PSMA could be enough. I had lymph nodes metastases from the pelvis to the abdomen up to the renal arteries. One treatment with Lu 177 PSMA took care of all the cancer in these lymph nodes.
Lu 177 PSMA does not cause permanent dry mouth. Ac 225 may cause permanent loss of saliva secretion. The treatment with Lu 177 I had, did not cause any problems with the saliva secretion.
If you get a Lu177-Ac225 mix you will rarely get a permanent loss of saliva secretion. Its different if you get several cycles of pure Ac225, then you will have this problem.
Prof. Ezziddin in Homberg is a good doctor, I would just follow his recommendations.
Ac-225-PSMA-617 may have greater salivary gland toxicity, but that is unpredictable. It is also more local in its effect than Lu-177-PSMA-617 (which is weaker, but casts a wider net).
The risk of early treatment is because PSMA expression is heterogeneous, so that killing off just the cell that the radionuclide attaches to (as Ac-225-PSMA pretty much does) may allow other nearby non-PSMA-avid cells to proliferate. On the other hand, PSMA avidity goes down over time and with duration of ADT (after an initial spike).
Reducing the cancer load with chemo, which kills cancer cells without regard to PSMA avidity, may help the subsequent PSMA-based treatment reduce the remaining cancer load still further.
Someday this will be tailored to individual patients depending on their specific PSMA profile, but no such data yet exists. It's a judgment call. It is also possible that more specific ligands than PSMA-617, now in development, may reduce salivary gland toxicity
Another option worth keeping in mind if he decides to move ahead with Zytiga instead as a next step, is a trial of I-131-MIP-1095 now recruiting:
Thank you so much for this interesting link, tango65. That's exactly what my husband did. And the result of the Lu177 treatment before all the other ADT or chemo treatments is very promising and without any side effects until now.
I had 4 x Lu177 infusions between last Nov and May.
Psa remained constant 25 after No1 shot, then went down slightly before No2, and a bit more by No3. Xtandi was recommended by a research doctor who is doing a trial on this. Psa went down more and more and was 0.4 at 2 months ago, and next Psa test is next Monday, and I hope its continuing to go down. I have been told that if or when Psa rises again I should be able to have more Lu177. Its cheaper and gentler than Ac225 which indeed is being mixed with Lu177 in Germany and combination is thought to work better than having only Lu177 and not have any more side effects.
I live in Canberra Australia and had to travel 300km to Sydney to get Lu177, an easy trip, but I did know that I would need more than one infusion. 4 shots at 8 weeks apart are the normal treatment, and from what other men say here, soft tissue mets are quickly reduced after 2 shots, but bone mets take longer. My post treatment PsMa scan told docs I had a good response, and nobody has said I have mutated Pca than cannot be treated, so I could be lucky.
I had 5 shots of Docetaxel chemo before Lu177, and when Psa was only 12, but chemo allowed Psa to rise to 50 after 12 weeks. But then before Lu177, Psa went down to 25, doctors had no clue why, but I went ahead with Lu177.
My biggest bone mets were size of a pea, so bones were not much affected. I had small amount of pain, and feeling I get from docs is that I did well to insist on getting Lu177 asap before Psa went high and size of mets became large, and thus less likely to be reduced by Lu177.
In Melbourne there is a trial of treating men initially with Lu177 soon after diagnosis so chance of man having mutated Pca is low. Chemo and other things are still possible after initial Lu177. Maybe initial Lu177 is very good where a man has lots of Pca in PG that cannot easily be removed with surgery and has spread to other areas. Mine was inoperable in 2009, Gleason 9, but there was no Lu177 back then.
Hi Patrick-Turner, I had two treatments of LU-177 in Sydney before chemo & it worked for me, psa down to 1.6 from 18. But then the MO insisted i have chemo before any more LU-177?Now psa is 12? & rising two & half years later, so considering trip overseas if travel restrictions will let me?
Do you have any contacts for the Melbourne hospital?
I live in Australia and in small city Canberra. I have traveled 300km to Sydney to get Lu177, and now am getting Ra223 from Theranostics Australia who have clinics in Perth, Brisbane, Sydney, but I do not know about Melbourne. TA is administered by Genesis Care, and I suggest you email them to find out where more Lu177 is possible.Your doctors may have been unwilling to continue with Lu177 because your follow up scans may have shown very low PsMa expression, so thy would not give you more. That happened to be after 6 doses PsMa. But PsMa Ga68 scans showed all visceral mets gone, but now bone mets making very low PsMa expression, so docs had good reason to not give more Lu177.
Docs have had you go to chemo, and it does not seem like that is likely to ever work. But your Pca may be re-sensitized to Xtandi or Zytiga, so while waiting for airlines to open again, maybe you could try these. Both are likely to work for 8mths as they did for me,
an maybe boost PsMa expression to that a PsMa scan would show a better picture of what's going on with your Pca, and just where the mets are, and how big they are.
Some here have gone to India last year to get Lu177. When I had first Ra223 at 2 weeks ago, there were to men from Japan getting Lu177 for Pca. A nurse at TA said they have cases from all around Pacific and south east Asia.
You can do scans in USA and talk to TA docs via Zoom, but you will need Psa Ma scan.
Research is going in Peter Mac Hospital in Melbourne on with Lu177 to find out how may repeat doses can be given and to find out why it just does not work well with some men whose PsMa scan indicated it should work real well. My Pca in bones seems to have mutated to make low PsMa expression, but it seems my Pca is making a much bigger amount of Psa so its now 250, and had increased 2.7 times in a month. But last blood tests did not indicate high amount of bone destruction.
I have no clue if Ra223 will kill Pca mets in my bones at a faster rate than the formation of new mets. One might read about how good these nuclide drugs can be but not for all patients, especially those who are elderly, and have 4 other serious health problems.
I hope you can get to have Lu177 soon, but you may have to spend a lot on travel and think outside the square.
Thank you Patrick, Your reply gives me much information to work with & I will do some research & find out more about RA223. I did the LU177 at the Macquarie University in Sydney with Theranostics so will contact Genesis Care as you suggest.
Sorry to hear your pca is producing bone mets now but you sound like a fighter so like you i will think outside the square.
All the best with this ongoing battle to stay alive with some degree of health.
The first Sydney clinic for Lu177 was at Macquarie Uni but they soon moved to Waratah Private Hurstville with admin by Genesis Care. My mutant mets are probably small, but have high number, and make more Psa.
There is no plan to get any scan before next talk to docs at TA by Zoom on 26 March, so soon. I probably will have next Ra223 a week later at soonest.
I have no idea of the kill rate per month will exceed the growth rate of mets, and this is never even mentioned anywhere, because its as if Bayer who make Xofigo just don't like this type of question, and perhaps others.
After all, drug companies are out to sell the benefits and and what they are really selling is a possibility of extending life considerably, so based on trials they are approved to sell stuff.
So with the list of successive treatments which don't work after anywhere between 2 months and 5 years, they all get approvals because they work out the mean extension of time for OS or Overall Survival, and for Ra223 its only 4 months, but that is probably because most men get Ra233 as their last end stage treatment as a form of palliative care and pain relief.
Beginning to get Ra223 when my Psa is 180 instead of 1,800 may mean I get more than 4 months, and of course the number of men getting Ra223 is low because most men develop mets in soft tissues as well as bones so Ra223 would be useless. If they have no Psma expression, mets won't show up in PsMa Ga68 scans, so Lu177 or Ac225 won't work.
There's research on using a different chemical to act as ligand to gather nuclides at tumors, so theranostic treatment does not have to depend on PsMa expression, but its not become therapy yet, so I have missed the boat for that breakthrough when it does become therapy.
Use of Ac225 + Lu177 is good, but side effects of dry mouth and eyes is much more certain.
I am Still waiting for a reply from Genesis care about LU177 treatment & i see the MO today so still hopeful I will have some years left?The side effects of LU177 are nothing compared to the drugs they sell us in the name of making money.
Your disease sounds terrible but your handling it.
It makes sense to me to do do the 177 Lu-PSMA treatment first (for all of the reasons given) and then go back for a repeat a PSMA scan. If the mediastinal met does not respond to the Lu treatment and still expresses PSMA, then I think the combined Lu + AC treatment should be considered. I recognize this is just a personal bias on my part as I am not aware of published research to date. I do know that in both in Germany and in Australia they are including and studying combined Lu + AC (Beta plus Alpha) in appropriate cases. I would consult with the medical director of the treating clinic that you are considering.
We are looking at the same treatment. After 4 Lu 177 treatments my numbers are starting to climb. Good luck and look forward to hearing of great results!
I am looking at varios hospitals in Europe. Cost is an issue for me. What are recommendations to limit costs. I am willing to travel anywhere as long as dosage given is same. I am an EU citizen. Thanks!
We are headed to Homburg 3/14 for a PSMA scan only. Kerstin told us they are not doing the LU177 treatment right now. The scan is 1800 Euros. I'll post what I find out.
Hi Lewwixki. That’s great news! We didn’t go 3/14 due toCovid. We were going for the PSMA and considering treatment. We had to do a Choline 11 in Decatur, IL and did SBRT. Next the PSMA at UCLA 8/20 to verify results. I’m thrilled you are getting treatment with the international restrictions.
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