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:
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"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."
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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!