I am writing this waiting for my radiation readings to go down so I can go back to our flat here in Windsor.
My first dose of Lu 177 is circulating through my system. Amazing it is jus 8 mL of “medication”. For those of you thinking about this therapy a PSMA PET CT scan will have to be done first to make sure your tumors are expressing PSMA. I was given 8 mg of dexamethasone to prevent a pain flair syndrome from cytokine release. This does not always happen but if it does it will be at the 24-48 hour mark. Something else I found interesting is that the therapeutic benefit does not actually start until around a week after the infusion is given and can last for up to 2-3 weeks.
Differing from those kind gentleman here on HealthUnlocked that shared their Lu 177 experience, I think my case is more on the extreme side of the spectrum so it will be interesting to see if my results are as favorable as those with low PSA’s and low tumor burdens. My PSA today is 3000 and my tumor burden is listed as “extremely high”. Sounds like a miracle will be needed to truly get this under control but we will see.
Tomorrow I have a quick nuclear medicine scan which will hopefully show the Lu 177 binding to various tumors then we fly home on Jan 17.
It really is too bad that the United States and other countries are so behind on this therapy. My dad always tells me that the more bullets you have in the cancer fighting gun the better your success. It would have been nice to have this option when my disease was much more manageable in 2018.
Quick thoughts on GenesisCare here in Windsor, England. It’s pretty average. Communication is not their strong suit for sure. They try to get you to pay for two Lu 177 treatments up front (which I refused). The flat they make you stay in is mediocre. Ours was a converted attic with sloping ceilings. We would prefer a hotel but I guess due to the radiation they don’t allow this. Very different from those who went to New Delhi, India that were allowed to stayed at the Westin or those that went to Vienna who are allowed to fly home the day of their infusion if they want (sounds pretty irresponsible to me).
Cost was as follows (you could see how this will add up with 6-8 cycles 😳)
PSMA PET CT = 2500 GBP (need to do this every 2 cycles of Lu 177)
Lu 177 = 13000 GBP
Labs and transportation is free
Flat in Windsor = 178 GBP/night
Food is up to you
I will let you know the effect this has on both my PSA and my radiographic evidence of disease as this data comes in. Wishing you well my brothers and their significant others.
Written by
Cleodman
To view profiles and participate in discussions please or .
Thank you for the update Dr. C. Sounds like things went well so far. Hope you can notice effects soon and your remaining stay and trip home are comfortable. Time for a good steak and cold one🤙
Certainly much more expensive than the treatment I got in Munich in 2016.
I believe it is a disgrace we do not have the treatment available in the USA. There is extensive experience abroad and there is not doubt the treatment is pretty safe and it helps to control the cancer for a while. Its effectiveness is mostly related to the tumor load which is not expressing PSMA.
Just blood work over the next month. I will then hopefully get my second cycle of Lu 177 in 6 weeks at a facility/country that does not drain the bank so vigorously.
I know you have gone thru and still going thru heck to get this done brother. It’s impressive determination and “ stick to it ness “ . You are impressive in your resolve to succeed , I hope this knocks the heck out of it giving you a generous boost to your time. Hoping for the very best 🌸🌼🦋🌻❤️❤️❤️
Very, very happy for you! It's the beginning of your second life. Keep kicking the beast to the curb.
Good work, the Dexamethesome will give you a lift and prepare to rest when it wears off. I was wondering if you know what the issue is with not being able to get the Lu 177 treatment in the States.
The trouble is we don’t believe anyone else’s research. Lu 177 is available is the United States for neuroendocrine carcinoma and I believe one other but we just finished phase 3 clinical trials for metastatic prostate cancer recently so it will take awhile for FDA approval and then for insurances to pay for them. Frustrating but indeed.
Yes I just needed to get this one done as I was not doing well and deteriorating rapidly. Hopefully this gives me time to look for a better cost effective option.
Yes it is saddening the total cost. This is no where near what the United States would charge foreign medical patients if the roles were reversed I can guarantee you that.
India can be had for $5700/cycle but you need to jump through a few more hoops to enter the country.
Regardless to pay for something so high to just give you more time is heart breaking to me. I don’t want to use up a vast majority of my savings for an eventual demise leaving my wife with an empty bank account but she will have no of it and allows says a few more month togethers...well you can’t put a price on that.
Such a horrible choice to have to make at the worst time in your life. As a wife, I would have a hard time not exploring every possible option, irrespective of cost. It’s kind of you to keep us posted on the details of your journey. I wish you and your wife the best and I look forward to updates on your progress.
I talked to the doctor in India a couple of years ago in India about doing Lu177 because I was going to do it but then decided to have my primary taken out and have more of the APCEDEN vaccines made since I knew that at least the vaccines kept me stable. Lu177 is most likely my next step if and when it comes back if new tumors are PSMA avid. There it was 14,000USD for all hospitalization including all blood work, PSMA PET scans etc. that was for three Lu177 infusions. The hotel and flights and food would be on me. The doctors name is Ishita Sen and the hospital is Fortis which I have driven, or walked by many times. Price may have changed a little since I was there? The Ac225 was more expensive at 20K for three treatments. When I talked to Dr Sen they were not combining the two, but that was a couple of years ago now. I know Paige from here that went said they were treated well, and the Westin shuttle took them back and forth. It would be nicer to go there where you could travel, but that will be awhile. I have been all over India when I went for my vaccines which was nice. Cost of a very nice hotel while traveling was around 60-80USD. Very nice hotels. Not sure what the Westin is, but may be more since it is in DLF 1 in Delhi. I usually stayed in really nice AirBnb’s for around $30 per night. I spent a lot of time in India since back then you still weren’t able to bring your vaccines back like you can now. Good luck to you. I was treated well at Medanta and the doctors I saw there spoke good English so no problem there. Uber’s are inexpensive.
My husband is in exact same place as you. 1st LU 177 was Monday jan 11. We are getting it in israel. Cost of drug $6000 but we have insurance here that covers all procedures just not the drug.. Heavy skeletal mets and possibly liver. PSA not as high at 170. Let’s stay in touch and compare notes
We are dual citizens and have macabbi insurance in israel and Medicare plus aarp supplement in USA. It’s not experimental here. It is approved just the drug is not covered yet. I recommend anyone to get lu177 here in Israel although not sure what procedure and tests would cost. Our isatope doctor at Rambam in Haifa is amazing and speaks English . We started at Sheba in tel Aviv but it was too far and we were not impressed with our “famous” doctor. Haifi was closer for us
In Sydney in Australia, Theranostics Australia is the company giving the Lu177, but this company is administered by Genesis Care, which allows the highly trained nuclide specialists to just work at supervising patients without worrying about the 3 girls at the counter and the nursing staff in the cancer ward. I found it easy to talk to GC by phone, so I have no complaints at all about their dealings with me.
I did not get dexamethasone during doses of Lu177 but they did give some pills for pain which I did not need to take, but I had a far lower Psa than you do.
My radiation level was highest at about an hour after Lu177 is given and I was put on a drip for saline water. After about 4 hours I was allowed to get a cab to train station and travel to my sister's address across Sydney and radiation levels were less than 1/2 maximum.
But just what the radiation levels are depend a bit on the Lu177 uptake, and if I had a much higher amount of Pca, more lu177 would have been attracted to mets, so radioactivity would have been slower to go low.
I was started on Xtandi after 3 doses of Lu177, because it was supposed to make PsMa expression higher thus make more Lu177 linger at mets. I guess that may have worked but I don't really know if it did. But Psa went very low after 4 doses Lu177, and I guess Xtandi just did what it was designed to do, interfere with hormone traffic until of course it probably stopped doing that at about 8 months after I began taking it in Nov 2019.
For 2 more Lu177 doses I had in July and October 2020, I was also given free sample of 20 Veyonda ( Idronisil ) suppository tablets and told to take 2 a day, for 2 days before and 8 days after each Lu177 dose because it was said to boost PsMa expression and make Lu177 work better. I have no idea if it did, or did not. But makers of Veyonda would have been interested in my results which they were given.
I now have Psa about 30, so I have had 2 years respite from rising Psa.
But Lu177 is not perfect, so I still have bone mets, but no soft tissue mets except for small amount in PG, said to have small significance, but who knows? It could be furiously spreading new mets, but 3 PsMa scans don't show that has happened yet.
As I mentioned in other posts, docs saw no good reason to give me more than 6 doses of Lu177. OK, I can't argue with them.
I should get Ra223 soon, and this does not depend on PsMa avidity.
I found very little Psa reduction after 2 doses Lu177, but after 4, Psa was about 1.7, down from 25 at start. Scan after 2 doses showed it was worth continuing, and later scans showed a good response until the last 2 scans which showed new bone mets with low PsMa expression. I pay usd $500 for PsMa scans.
I had to pay about usd $7,000 for each Lu177 dose.
I hope you get a good result, but remember it may not be a permanent result, and you need to ask what can you get after you have Lu177.
Congrats. You made the right choice. I went to Dr. Richard Baum in Wiesbaden. Much less expensive than what you paid and total German efficiency. You're on your way, I was with guys who were as bad, if not worse than you, and they are on their way to remission. It will probably take several more blasts, but it can be done.
Thank you for this detailed information; it’s very helpful. Stay strong and stay positive. You are an inspiration. Your father is right and at least you have the treatment now. Jimmy Carter and Lance Armstrong are two examples of “miracle” cases where the novel treatment strategies knocked their cancers down. Both were told they had no hope. All the best.
Greetings, Glad you got the infusion. Actually today Charlie and I meet in Newark and head back to New Delhi for our last infusion. If you have not traveled back home ask for a letter so if you set off the radiation counters at your home airport it will go more smoothly. The first time it did not go off but the second trip both of us got tagged. It builds up in your system. Any way God Speed.....Blue Skies always...have to leave Penny behind (woof) Sky King
Best of luck over in New Delhi. If Bisque is still open just down from The Westin at MG Road and Dakshin Marg the Armani chicken with veggies is excellent if the driver can pick it up for you!! They have some good breads and excellent desserts too if you are so inclined. Hoping you have great results. Chris
Thanks for the update. I’m actually headed to India tonight for my third and final round of LU 177. I’m lucky to report I’m having a very good response-maybe because I started treatment early with psa 4.5 and 4 bone Mets and hormone sensitive? I also started Lupron about the same time I started lu-177. Presently, I’m undetectable and PSMA PET scans clear. However, I was reminded I shouldn’t look at this as a cure but rather kicking the can down the road- maybe years. I’ve been very happy with India. Dr Sen is the head of Nuclear Medicine at Fortis is awesome and the Lu177 is flown in from Germany. Travel logistics are an obstacle because of Covit19 but not insurmountable. The price as mentioned is $5700/treatment and PSMA PET scans are $400/ea. Reach out to Dr Sen and her staff walks you through details on travel and accommodations. +91-124-456-2200
Best of luck Charlie. I hope I don’t ever need Dr. Sen since I am still NED with the help of APCEDEN vaccines, but I have no worries I’d be in good care with Dr. Sen. Glad it appears it has helped you. Fly the friendly skies!
Interesting choice of treatment this early in your journey with prostate cancer. I am curious as to why you jump to this treatment before chemo and then zytiga? You are on Lupron so it wouldn't be ADT issues.
I'm always interested in the thought process that goes into these decisions.
My diagnosis was similar to yours but I was 3 8s and 3 9s. No mets as far as I know and I'm on Eligard Zytiga and completed IMRT in Nov 2019. I'm due to stop ADT as long as I remain undetectable my last psa was <0.01
I relied on people smarter then I. My wife, Fuzzman, Dr Sen and my mentor pilot52. I was told by Dr Sen I responded remarkably well to LU177 and she’s predicting good results. I’ll take that.
What a coincidence...my wife is smarter than me also, until something breaks in the house and then she's dumb as a door knob, (Joking obvioulsy)
Did insurace cover any of this Lu-177 treatment? Also, I understand that a side-effect and I think it's from multiple treatments but you are wiser than I on this topic is lukemia.
Are you concerned at all or is that concern over blown?
I was fortunate enough to be in the Vision LuPSMA clinical trial. I had 6 treatments and since then my PSA has been undetectable and cancer in my lymph nodes is gone for now. Get this treatment if you can
Just finished my third infusion in Vienna in November. Follow up scan is scheduled for Feb 18th at UCLA. (took awhile to be able to set it up) Enjoyed Vienna the first two times there but the country was under complete lockdown the 3rd time. Hope they gave you a card to carry to get through customs at the airport. I was triggering radiation alarms all over the place. Feel good about what you paid......mine was slightly more! But Dr. Hautenbach is a valuable resource.
Praying for your success and safety! Stay strong and enjoy every day, my friend!
I am another Lutetium-phile with 6 infusions under my belt starting in 2017. It slowed my PC progression down. All the best. ROb.
Hello Cleodman
This is Tom....most of our post are placed by my wife...but she showed me your post this morning which made me want to ask you a few questions if I could please;
My marker is climbing after a nice respite from my Lu treatment three years ago (I did four treatments)
I’m at a 41 and moving up...my highest was 127 during which I did have pain in my sternum (where I obviously have one of many lesions)
My questions are what if any pain are you in and does anything give you relieve...at what level did things seem to make the biggest turn?
I know I’m not gonna beat this so I’m trying to figure out the signs that are probably fourth coming....have my wife and family that I’m trying to get into a better place and it feels like my time may be shorter than I think....I know each individual is different just wanted to know yours....hope it’s not to personal my asking....and I hope that the Lu works for you as it did me 🙂
Hi Tom. Brian here. So I did pretty well from time of diagnosis which was March 2017 until about June 2020. I had stage 4 from the get go but never had any pain other than that caused by chemotherapy docetaxal during my first year. Joint pains and pain I would liken to plantar fasciitis. However by the end of November this year I started getting really bad night sweats (not the typical Lupron sweats) along with fever/chills and unbearable lower back, pelvic and bilateral groin and leg pains. My PSA doubling time was about 3-4 weeks. I had an MRI of my T and L spine with contrast which showed countless bone infarcts as the likely cause of my pain along with the countless metastasis. The bone infarcts may be caused by Xgeva (which I stopped) or may be due to congestion of the blood supply of the small blood vessels which cancer cells. Tough to say really.
As far as pain control. Well it was difficult even with me being opiate naive. I was taking 1000 mg of acetaminophen every 6 hours, 600 mg of ibuprofen every hours, oxycodone 5 mg every 6 hours as needed, gabapentin 300 mg every hours as needed and a fentanyl patch 12.5 mcg/h changing every 3 days. I also had some THC gummies I would take at night. I think just be sedated and altered helped but sometimes it would take a hour for the severe pain to calm down and I would be screaming for death to take me. Sorry for the drama but I have never felt that kind of pain for that long before. I think the bone infarcts have stopped as my pain is more manageable now and I just take meds as I need them (usually to sleep through the night).
I received my first Lu 177 infusion just 4 days ago so I don't think it has started to do its thing yet. I have no doubt in my mind that if I did nothing I would have died within 6 months but we will have to see what this does. The travel to and from London was really hard for me and COVID precautions makes everything 100 times worse. There is no way I would have been able to fly coach but those first class tickets really crushed my savings.
Never feel weird about asking me personal stuff. I use this website for bonding purposes with men who are going through what I am and to express myself and less so for getting medical advice from non-qualified lay people. I hope this helps my friend.
My husband is currently in Delhi, India at Fortis Memorial. He had 4 lesions. One rather terrifying on T6 that would not stop growing after being hit with Radiation twice. Our doctor told us to get LU177.
My husbands scan after two treatments and PSMA... NO VISIBLE TUMORS and PSA undetectable. We are over the moon!
Cost of treatment $5,500 US
Suite at the Courtyard Marriott walking distance to Fortis $80. A room is $40
Roundtrip airfare I have seen for $800 from the east coast.
Not only have results been incredible, but probably the most cost effective place to go.
Fortis has a concierge waiting when you step off the plane to guide through immigration. Taxi waiting. We stay at the Westin and they act like we are movie stars. The hospital staff does everything possible to make our experience great.
If you are looking for a shiny, gorgeous hospital with so so medical care, this is not the place to go. But the results have been better than any SOC care we have received in the US. Thank god our doctors in the US put my husband first and admitted when they could not give them the care he would benefit from the most. Not every man has a doctor like that.
I own Fuzzyman77 for everything. Without him responding to me on this site, I can't imagine where we would be at the moment. I was terrified in August when the German hospitals wouldn't even really respond.
Another man I met on this site is with my husband at the moment and I won't spoil it for him posting his response, but I will say, my husband is not the only one that is having an exceptional response with Dr Ishita Sen at Fortis Memorial.
Wishing you the best brother. I'm about to get some tests this week to see if I qualify for the ARROW clinical study of I-131-1095 Radiotherapy in Combination With Enzalutamideclinicaltrials.gov/ct2/show...
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Lu-177 Second time around
LU 177 - protocol in London
LU-177
Six cycles of Lu-177 treatment
