Lu-177 in Austria - Report and underl... - Advanced Prostate...

Advanced Prostate Cancer

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Lu-177 in Austria - Report and underlining high importance of both FDG and PSMA PET/CTs

CurrentSEO profile image
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I just finished follow up PET/CTs scans 7 weeks after last of three Lu-177 infusion by Prof. Hartenbach in Minute Medical in Austria.

Anyone interested in my diagnose and prior treatment choices can find very detailed info in my profile.

In the Minute Medical they do Lu-177 infusions every 4 weeks - 3 infusions in total with average dose 7.5-7.8 GBq, however first dose might be increased depending on patient profile. Also what I consider interesting for patients with significant bones metastatic burden they offer one infusion of Actanium and two infusions of Lu-177. I didn't need Ac, however according to Hartenbach single Actanium infusion does not cause dry mouth and that might be interesting option to some.

Price is 20k Euro per Lu-177 infusion plus 3k Euro or PSMA PET/CT and 1,4K Euro for FDG PET/CT. FDG PET/CT is not required, however I insisted and chose to do it (thanks to this great forum).

I did not have any dry mouth or other side effects, except first week some nausea and periodically pain in pelvic lymph nodes area, also feeling tied a week after infusion.

After an infusion you go straight to the hotel or to the restaurant to have some wine and food, wine is optional of course ;)

I took berberine, resveratrol, quercetine, turkey tail, red yeast rice, curcumin, melatonin and chaga supplements through the treatments.

I discontinued Orgovyx (on which I was for 2.5 months) 6 weeks prior to first treatment and took a shot of 3 months leuprolide 11.25 mg (that is half the dose used in the States) 9 days before 3rd Lu-177 infusion.

PSA prior to first Lu-177 treatment was 50+ ng/mL and doubling in roughly 25 days. PET/CTs showed some discordance in the prostate for FDG and PSMA and one small suspected FDG+/PSMA- bone lesion. Considering I'm hormone sensitive - I decided to go with Lu-177 anyhow with this discordance. However for persons who have significant FDG/PSMA discordance and already castrate resistant going with Lu-177 could be a much more risky choice.

PSA roughly halved after each of the first two infusion, prior to 3rd was added leuprolide 11.25 mg. Last PSA test was on 4th of June and it was 3.62 ng/mL and testosterone at 11.

Summary of the Lu-177 treatment report:

_________

"Indication:

Prostate adenocarcinoma via biopsy July 2020 (Alta Klinik Bielefeld). Gleason score 4+4=8. Volume >800ml.

Lymph node metastases and suspicious bone lesions. PSA at ID >1,600ng/ml, peaked up to 13,000ng/ml.

Casodex September 2020 for 6 months. Beginning castration resistance. 08/2020 until 12/2020, chemoembolization of the prostate (Prof. Vogl, Frankfurt). Tulsa Pro treatment (HIFU) in Alta Klinik Bielefeld 02/2021. Prostate volume reduced to 50ml. PSMA PET/CT 21st October 2021: PSMA expressing prostate tumor, locoregional lymph node metastases. November 2021 until mid Jan 2022, ADT with Orgovyx, started at PSA 100ng/ml. PSA Nadir 18.6 on 24th January, increasing to 50.6ng/ml on 17th February 2022 at the previous PSMA PET/CT. Now after 3x RLT with Lutetium-PSMA and 1x Trenantone on 11th April 2022 before the 3rd RLT, PSA decreased to 3.6ng/ml."

"Summary:

In biopsy proven, locally and locoregionally advanced prostate carcinoma Gleason 8 after sequential ADT, local chemoembolization, HIFU and now 3x RLT with ADT started again 2 months ago, PSMA PET/CT shows in comparison to the previous investigation a complete remission. Compared to the actual FDG-PET/CT,

there is however still glycolytic activity:

• No suspicious PSMA expression in the prostate or seminal vesicles anymore. The organ size again significantly decreasing. However, although decreasing, there is still detectable glucose metabolism in the right prostatic apex as well as dorsally in the prostate base between the seminal vesicles as a sign of suspicious residual tumor tissue with higher proliferative potential.

• The former two parailiac lymph nodes bilaterally are not detectable anymore.

• The faintly PSMA expressing bone lesion in the 7th rib to the left is showing decreasing PSMA-

expression, but still below a level of significance. Still this finding is more compatible with unspecific pitfalls rather than a bone metastasis. The faintly sclerotic lesion without PSMA expression but now decreasing mild FDG uptake in the lower right ramus ossis ischii is similar in shape. The uptake is not reaching a level of significance.

• The known larger lesion to the right femur shows up equal in size and uptake to the previous PSMA PET/CTs as well as compared to an MRI from 2020. Again, a benign genesis of this lesion is most likely."

_______

So, as you see if I did not do FDG PET/CT - I would have being considered in complete remission with only the PSMA PET/CT, as you understand I still have some work to do for that to become the case.

If we take into consideration adaptive theory, than might be eliminating all PSMA avid cancer and leaving generally considered to be more aggressive cancer FDG+ cancer could be risky, however hormone sensitivity of cancer is still on my side to control it if I have too.

If anyone have questions regarding Lu-177 treatments in Minute Medical in Austria, I would be glad to answer. I also can say only good words about Prof. Hartenbach and his clinic.

My goals are still remains the same for now - it is to preserve good quality of life that includes sex and continence and to avoid systemic chemo and if possible external radiation, also very important to avoid continuous ADT. For now I do not want to be on ADT more than 3 months... but may consider a bit longer if choose to do external radiation later on.

After chemoembolisations, Lu-177, Tulsa-Pro surgery is not an option still and to be honest I do not want to consider it anyhow.

My plans for future treatments how I see it now:

Do not do another Lupron shot now (wasn't planned anyhow) and in September to do again PSMA and FDG PET/CTs scans as by then Lupron will be completely out of the system and PSA most probably on a rise. Also in September to do a fresh biopsy from prostate and do NextGen oncology Lab nextgenoncology.de/en/analy... tumor profiling for somatic mutations (if any). My initial biopsy did not had any actionable mutations and I do not have any germline mutations either.

If somatic mutation found, then will do intratumor vaccination with Dr. Gary Onik in Florida... and see for 2-3 months after that the results.

If no somatic mutations found may still do Gary Onik vaccine... or may not, and then ADT for few months and External radiation to prostate and depending on behavior of FDG+/PSMA- suspicious bone lesion maybe radiation to it too.

Also looks like introduction of Metformin and statin should be in order, considering FDG+ cancer.

I have to give huge credit to this forum and it contributors that helping me to decide on my approach to cancer.

As you can see I have quite "unusual" approach to handle this cancer and have high risk appetite, so I would appreciate any ideas (even if for vast majority they sounds crazy) and information about any experimental treatments that are accessible through trials or privately that can bring long durable remission without systemic chemo, continuous ADT or external radiation.

Thank you!

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20 Replies
noahware profile image
noahware

Thanks for the detailed report. Your SEs sound similar to mine: first few days some nausea, very slight bone pain, and still feeling a bit tired a week after infusion.

I had far less nausea with my second infusion. Both times I had gum or lozenges to stimulate saliva flow. The second time, I did not start these until leaving the facility (about an hour after infusion) and then for the next few hours I spit out nearly all the extra saliva I produced. The first infusion, all was swallowed, with a LOT of saliva produced right from the start of the infusion. My theory was, radioactive saliva may help induce more severe nausea.

Are any of the supplements you took specifically viewed as things that might increase efficacy of the Lu-177? Did you try anything else with that in mind? I recall reading on the forum that a doc (in Germany, I believe) had suggested disulfiram (called Antabuse in the US) could make the treatments more effective, but I have been unable to find any reference to that online.

Disulfiram of course means no wine with dinner!

CurrentSEO profile image
CurrentSEO in reply tonoahware

I did not try any other supplements or meds during Lu treatments, those I chose because they either might radiosensitize or protect normal cells from radiation, RO was indifferent to my choices of supplements. He was only categorically against folate and B-12.

Treatment was very successful against PSMA avid cancer as you can see, however now I left with the more aggressive part that is FDG+/PSMA- and controled by ADT currently... and need to figure out how better to deal with it in September.

I'm going to spiritual retreat with Iboga by the end of this month to help me figure out best course of action now.

Brysonal profile image
Brysonal in reply toCurrentSEO

Thank you for the update and the highlight on the importance of scans to have a fuller understanding of what is going on.

Pleased your PSA is down with minimal and short term side effects from the Lu-177. This mirrors my experience in Dec21 -Feb 22. The risk of repopulation is a worry as we have seen use of Lu-177 make things worse not better for some. I do think earlier seems to make more sense and hopefully one day clinical trials will support that.

After my 3 x Lu-177 I did 3 x Docetaxel ( March, April and May) to mix up the approach and now it seems a distant memory as I had no significant hair loss ( bit of thinning - but now returned) no impact to nails or neuropathy ( I know 3 is not the same is the impact of 6 and I got the full iced up treatment.)

I too had really wanted to avoid it but hosted 50 odd people for daughters 30th 6 days after first treatment, partied till 4 am, worked and lived life between treatments. A half course therefore was 100% tolerable for me.

I admire you making your decisions personal and completely rejecting a one size fits all approach. I don’t think PCa is a single disease but an umbrella term for multiple subsets and treating the individual not the term will be the future.

Have a good weekend

CurrentSEO profile image
CurrentSEO in reply toBrysonal

Thank you!

I closely monitoring your reports about your treatments and your success with Lu-177 were encouraging to me. I following your very unusual protocol of 3Lu + 3 Taxotere consequently... and then External Radiation 20 sessions... you went really hard after cancer and that looks interesting and I hope and wish your chosen individual protocol gives you long and durable remission without any significant side effects.

Have a good weekend as well.

Brysonal profile image
Brysonal in reply toCurrentSEO

I too am following your protocols with much interest too! I really appreciate you sharing esp being happy to call out that HT is a big big deal.

Arrived back home yesterday after adding the radiotherapy part of my plan. A bit of upset stomach on a couple of days but back to normal now.

Keep us updated won’t you. No PSA tests or scans for me at this phase so nothing to report except it’s nice to be home despite enjoying Finland.

Yorkielover2 profile image
Yorkielover2

Could you explain what you meant by “if already castrate resistant Lu-177 could be much more risky” Husband considering this but most likely his last option. Fighting now 6years PSA never lower than 40 (1000+) when diagnosed 2016. Chemo done few months back he hasn’t been the same since.Pet scan CT & PMSA next week to see whats going on.

CurrentSEO profile image
CurrentSEO in reply toYorkielover2

Forgot to explain why it is more risky when castrate resistant to go with discordant FDG and PSMA scan results to do Lu-177. You can check my results in my initial message in this thread and you can see that all PSMA avid cancer was eliminated (not detectable by scan) and if you did not do FDG scan you would think you do not have detectable cancer, but as you see it is not the case.

I as hormone sensitive can still control FDG positive with ADT if I choose so, however if person castrate resistant and if your husband is castrate resistant he can’t control FDG+ with ADT. FDG+ considered more aggressive than PSMA avid cancer and as a result high risk of repopulation without able to control it with ADT. That is why it is more risky. Plus your husband just after chemo and it not looks like another chemo is an option to control it. So both scans are must before deciding on Lu.

Once again all opinions are personal and I’m not a doctor.

CurrentSEO profile image
CurrentSEO

What I mean, that your husband must (!) insist and do Besides PSMA PET/CT also FDG PET/CT scan prior (!) to making his decision to go with Lu-177.

If his fused above PET/CTs come concordant or very slightly discordant than he should go ahead with Lu-177, best results of the scans would be PSMA+/FDG- in that case definitely he should go ahead with Lu-177.

In case his scans come discordant, then he should Not do Lu-177 and choose some alternative, maybe clinical trial.

All of the above are my personal opinion and I’m not a doctor.

Good luck with results and I wish you successful treatment!

Yorkielover2 profile image
Yorkielover2

He has all three scheduled for next week! We have a great Oncologist and has done his best to keep George doing what he wanted for the last five years! Work but not able to now! So it is a quality of life vs treatment with how much time you gain. Thanks your post was informative.Good luck to you on your journey.

CurrentSEO profile image
CurrentSEO in reply toYorkielover2

Thank you and Good luck to you and your husband!

TJGuy profile image
TJGuy

Lupron at 1/2 strength of Lupron in the US? Typical in Europe or just for LU-177 treatment?

CurrentSEO profile image
CurrentSEO in reply toTJGuy

I'm not sure, but I was told that at-least in Austria they prescribe it this one Trenantone® 11,25 mg for 3 months. As my goal was to increase PSMA expression before 3rd Lu-177 infusion, so I did not really care, but will monitor testosterone level to see how it works. If it works at half US standard dose it would be interesting. Current testosterone between 11-12 ng/dL.

d3is4me profile image
d3is4me

Thank you for a very comprehensive report I am very interested in your journey All the best

CurrentSEO profile image
CurrentSEO in reply tod3is4me

Thank you and same to you!

j-o-h-n profile image
j-o-h-n

It's party time using AC or DC Current.......Congrats.....

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 06/11/2022 11:24 PM DST

CurrentSEO profile image
CurrentSEO

John, still some things to do to get into remission. 😉

However parties are always good and I’m not trying to restrict myself😜

Thank you!

GeorgeGlass profile image
GeorgeGlass

What is the chemoembolisation that you did? I’m not familiar with this.

CurrentSEO profile image
CurrentSEO in reply toGeorgeGlass

google.com/search?q=chemoem...

I did in Frankfurt with professor Vogl

GeorgeGlass profile image
GeorgeGlass

Are there any places in America that do this - OmniThera Panomics Profiler assay?

CurrentSEO profile image
CurrentSEO in reply toGeorgeGlass

I don’t know

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