Lu-177 and chemo naive patient (me)

[pilot52]

First I could not wait 12 months for Lu-177 so I am headed back to India for my second round. I will state I was Gleason 9 12 cores 2016. Xtandi had begun to fail and at time of first infusion my PSA was 13+ and climbing rapidly. I was termed to have a heavy tumor load...13 bone mets. I had a high PSMA uptake and the infusion confirmed this. 12 hours after infusion bone pain was gone and so far it has not come back. I am not quite 4 weeks out. At 3 weeks my PSA has dropped to 5.03. I will answer more questions if needed if you need to travel.

Tian Zhang is my OC at Duke . She was involved in the Vision Trial which made it easy for me. I did not want chemo route if possible. She sent me to UCLA for the scan. She also tried to place me with Tagawa at Cornell. Great trial but I did not fit. We talked to Tulane and she was not real happy nor was I as far as being a fit for me. Michael Hoffman wrote me a very informative letter but alas I was not a fit there. Braun in Germany I found out from Ishita Sen my nuclear therapy doctor in India has retired. So I decided on India. Isreal I was in contact with but I chose India. The Lu-177 is made up in Germany and shipped. India or where ever simply infuses you . 40 min...

Duke is going back into additional clinical trials in 12 months for chemo naive patients . There appears to be benefits and I think I will be another small piece of the equation when finished.

I am posting because if you need to go , logistically it can be done even during Covid. Also, for those who may need it down the road it is coming. Currently there are two of us going back and forth to India and Charlie has moved to Dr. Zhang because of her knowledge and she and Dr. Sen stay in contact with each other on our cases. Dr's Zhang and Sen are not only smart, but carry on there practices without ego. They reach out to colleagues in order to further your case. Zhang spent a great deal of time trying to place me in the US and I had an hour phone conference with Tagawa ....He is also conducting a AC-225 trial which I am to early to consider.

This post was just to give some general info...

Blue Skies,

Sky King and Penny (woof)

[GP24]

I guess you did not mean Braun but Prof. Baum. I am surprised that he did retire, I had a PSMA PET/CT at his clinic in February and he had just moved to this clinic in January.

curanosticum.de/team/aerzte...

He asked me to get my next PSMA PET/CT in January 2021. I guess covid changed his plans.

[pilot52 in reply to GP24]

Dr. Sen said he may work part time...Is this the same guy..she said he is 85?

[GP24 in reply to pilot52]

He may continue to work although he gets retirement payments. He is 65 years old.

[StayingOptimistic in reply to GP24]

Was any activity on the psma you did in February?

[GP24 in reply to StayingOptimistic]

There was no activity on the PSMA PET/CT in February and none in the recent one in September. However, I have a short PSADT so I suspect PSMA negative tumor now. Discordant lesions as Dr. Hofman in Melbourne calls it. I will wait for my PSA value to rise above 3.0 ng/ml and then get a Choline PET/CT to locate this tumor.

[depotdoug]

Safe travels to India, the large continent. Enjoy some food if Lu-177 treatments are nice to you. My wife and i spent 3 vacations/R/R's in Sri Lanka. Loved that Cuisine a lot.

Best of wishes for squashing you PCa..

[Tall_Allen]

Thanks for the informative post! I hope your second infusion works as well as the first one. I think that treatment earlier in progression is usually better than later. They don't require chemo in South Africa either:

clinicaltrials.gov/ct2/show...

[KSK54 in reply to Tall_Allen]

Pilot 52,

Welcome to India. I am just 20 minutes away from your hospital.

Do let me know if I can be of any help.

It will be my pleasure to be your host in Gurugram. At least a dinner with you. Dr Sen is great.

Mob-9999988309.

[pilot52 in reply to Tall_Allen]

Yes I agree. I was dosed 320mCi and did well. My blood counts are normal. Not having chemo my bone health was much better...Tagawa has a clinical trial where you receive 500 mCi. 1 infusion, You have to be PSMA reactive but not detectable on standard scans.

[rassusukumaran in reply to pilot52]

Please explain how one can be PSMA reactive but not necessarily visible on the scan. To my knowledge, the Ga PSMA scan is the basis on which is decided if one is PSMA naive and suitable for the treatment. Appreciate your views

[pilot52 in reply to rassusukumaran]

I had a PSA that bounced around between 1 and 5 with my last Axumin PET March 2020 being negative for metastatic disease. A PSMA scan would have picked it up at that time. Tagawa is looking for early disease which is still not detectable on Axumin or bone scans. I would have fell into this category however I was unaware of his trial. Does this clear it up?

[Hope59 in reply to pilot52]

Hi, do you have a link to the trial?

[pilot52 in reply to Hope59]

Contact Weill Cornell University. Tagawa is the lead investigator for these trials to be conducted at different Universities..Lu-177, and also a AC-225. I had an hour zoom conference with him but when my scans showed tumors I was out. ( Lu-177) this trial is made up of 2 out of 3 receiving Lu-177. Let me know if you hit a wall. Just message me....

[Hope59 in reply to pilot52]

Thank you!

[Bangkok]

I almost feel guilty posting as my experience was almost nothing. I was diagnosed with stage four metastatic PC with an astronomical PSA of 1000 two days before Christmas last year. My daughter is head of operations for the Canadian government in Dhaka so we meet her every year fora cycling trip in SE Asia. When she heard of my condition she arranged for me to have radioligand therapy in Bangkok. My wife and I took up an apartment in the Ari section while airports shut down and borders closed. We stayed for four months and I had three (painless) treatments. In fact we resumed our morning 5 k runs two days after. My final scan showed no Mets and in remission. I had no biopsy nor hormone shots - no nothing beforehand. I'm 73 and I have been an athlete since my 20's. According to my Thai oncologist- that is why I responded so we'll. When the dust settled we had spent $80,000 CAD but what is a life worth? To be able to wake up next to my wife of 44 years for an extra (who knows) is worth every penny.

[pilot52 in reply to Bangkok]

Great stuff , While I have had ADT I have not had chemo...With 3 rounds in India and first class airfare and accommodations and a new BMW and driver to take me back and forth my total bill will be in the range of 36,000.00 to 40,000.00

Tagawa at Cornell is working on trying to detect your PSMA very early and then one round of Lu-177...Knowing this now and having an early local tumor which was large I would have been in NYC ......

[Bangkok in reply to pilot52]

My bill incl apartment and 4 months of delicious Thai take outs, 3 scans and 3 treatments came to $80,000 CAD. But...we were in a country of 69 million with fewer than 100 Covid deaths. India is now 200,000 cases a day.

[rassusukumaran in reply to Bangkok]

You have had an excellent response to Lu PSMA in my opinion. Did you have mets to the bones? How many cycles did you do and which hospital were you treated at? I am from Malaysia, and I just completed one cycle. Am concerned about White blood cell count. Did you have any problems with a PSA of 1000?

[pilot52 in reply to rassusukumaran]

14 bone mets. All my blood work is normal. So far one round going back the 13th of November. Just beginning to feel a slight amount of bone pain..nothing worth taking anything for yet and it is intermittent . I had a high expression when I had my PSMA scan at UCLA so yuppers I am happy...Good Luck..they can get you wbc back up so I hope you can see benefit from your tx...Blue Skies, New Delhi, Fortis, Dr. Ishita Sen..

[pilot52 in reply to rassusukumaran]

my PSA has never exceeded 13.6 however all 12 cores of biopsy were Gleason 9

[Bangkok in reply to rassusukumaran]

I was lit up like a Christmas 🎄. Mets from clavicle to femors.

[rassusukumaran in reply to Bangkok]

Bangkok, appreciate your response. You failed to mention the Hospital/doctors who treated you and the actual cost per infusion of LU177 PSMA in Thailand. We in Malaysia have to pay something like Malaysian Ringgit 33,000 per infusion. I am sure it's cheaper in Thailand. If you can confirm this we would prefer to do it in Bangkok as well in the future. Appreciate the info. Thanks.

[pilot52 in reply to rassusukumaran]

Fortis Healthcare , New Delhi, Dr. Ishita Sen is my doctor(India), and 5700.00 US covers infusion, scans and hospital for each round of therapy..Dr. Sen and Dr. Zhang ( Duke Cancer) work together on my condition. Dr. Zhang my OC was part of the Vision Trial a couple of years ago here in the US.

[Bangkok in reply to rassusukumaran]

I think it's more expensive in Bangkok than anywhere even Bad Berkin in Germany. It was about $3500 CAD for the PMSAscan and $20,000 CAD for the treatment. The Sametivej Hospital was voted the Best Hospital in the World for 2019 and 2020. I was already in SE Asia so decided to have the best in the country with the lowest Covid cases. I wasn't looking for bargains - I was searching for life.

[j-o-h-n]

Blue skies all the way........Sky King, Penny and Shadow

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 10/24/2020 7:06 PM DST

[SPEEDYX in reply to j-o-h-n]

Always loved his plane!!

[j-o-h-n in reply to SPEEDYX]

The songbird.............. I always loved his niece "Penny"....

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 10/24/2020 7:30 PM DST

[SPEEDYX in reply to j-o-h-n]

Yes...the other show I like was SGT .Preston of the Yukon

[pilot52 in reply to j-o-h-n]

Thanks John , I have a 58 Baron but the Cessna 310/320 were a beautiful sleek design..they look fast sitting on the tarmac..

[Fanger1]

Congratulations on your results with Radioligand Therapy. Blue skys, Wheels Up🤙

[TheTopBanana]

wow great news!! may I ask why you choose India instead of Europe? Is India better? (I don't know myself so curious)

[pilot52]

Lu-177 that India uses is made up in Germany. The infusion is simple. General German protocol is SOC so you must have chemo. While not the most modern facility Dr. Sen is tops. Australia was out due to Covid. Isreal is fine except they were slow to accept you . This has changed. Everything about the stay , Weston hotel and driver were excellent . My OC at Duke and Dr. Sen communicate well. They are on the same page. If you need to go just choose a place communicate and move forward. Again Lu-177 is a simple infusion followed by dosimetry scans. As long as your nuclear medicine physician is on top of things and you qualify you will be fine.