Heading to India for LU 177 - Advanced Prostate...

Advanced Prostate Cancer

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Heading to India for LU 177

Cleodman profile image
72 Replies

Hey guys. Hopefully I will be making a stand against this stubborn disease in 10 days. Have no idea about my PSMA avidity but due to my rapid decline I made the decision to head to New Delhi next week with the intent on receiving LU 177 treatment if my PSMA PET CT lights up like a Christmas tree! Was trying to get a PSMA PET CT at UCSF to ensure the trip won’t be a waste of time but with the recent FDA approval they are so back logged at the moment that it may take quite some time to get it done. So I’m rolling the dice and hoping that all the treatments I’ve had so far has not diminished this antigen from being expressed heavily on my metastasis. 🤞🏼

Flights are now booked and really hoping this will work out like it has for others out there to calm this beast for a little while longer.

72 Replies
Longterm101 profile image
Longterm101

Praying for you

Keep us posted

Cleodman profile image
Cleodman in reply to Longterm101

Thank you. Very appreciated and I will for sure.

RyderLake2 profile image
RyderLake2

Hello, Good on you. Many successful stories on this site about Lutetium particularly if your cancer is the "good kind" (adenocarcinoma) that emits PSMA. If it is the "ugly kind" (neuroendocrine or small cell) which doesn't emit PSMA, a much different story. Please let us know how your treatment goes and what the Gallium PET scan reveals. I think you will find going to India is money well spent. Is your wife accompanying you? Keep receipts for everything. You should be able to deduct most of it on income tax.

Cleodman profile image
Cleodman in reply to RyderLake2

Thanks for the words of encouragement and advice. Yes she is coming with me. I will keep you good fellows posted.

meowlicious99 profile image
meowlicious99 in reply to RyderLake2

Can it be of both kinds or is it one or the other

RyderLake2 profile image
RyderLake2 in reply to meowlicious99

Hello, Once the horses are out of the prostate barn (and metastasized to the bones and elsewhere) there is every kind of cancer cell imaginable. You have to hope the majority of your metastasized cancer cells are the "good kind" (adenocarcinoma) rather than the "ugly kind" (neuroendocrine or small cell). The former is treatable with Lutetium 177. The latter are not. Descriptions come with a tip of the hat to Clint Eastwoods's movie: "The Good, the Bad, and the Ugly)!

vforvendetta profile image
vforvendetta

Wishing you the best, safe travels, and a successful treatment. May God bless your journey.

Hope59 profile image
Hope59

Praying for you! Safe travels!

16starsky profile image
16starsky

Yes please keep us posted, we are also considering going to India for this treatment, so would be very interested in your experience .Wishing you good luck and a safe journey

Cleodman profile image
Cleodman

Thanks!

noirhole profile image
noirhole

Safe travels. I hope you get a chance to experience the culture and food. When we go for treatment in various cities we act like tourists when not in the hospital. Touring is a great distraction. Have done LU-177 which worked wonderfully in PMSA positive cells. Good Luck!

Cleodman profile image
Cleodman in reply to noirhole

India was the first country outside of Canada and the USA that I travelled to by myself as a young man in 1998. At that time I was chasing the elusive and endangered bengal tiger hoping to catch a glimpse of one of these magnificent beasts in the wild (never did but the adventures were unforgettable). Looking forward to exploring India a bit again...even if just New Delhi. 🐅

Lavender22 profile image
Lavender22 in reply to Cleodman

Good luck with your trip and this new treatment, from which people are benefitting. I understand the bengal tigers are making a come back in the reserves...

Kaliber profile image
Kaliber

Good for you, hoping the treatment is very successful and everything goes smoothly. Thinking good thoughts for you. Give us a report when you get back, lots of brothers and sisters here would like to hear.

Bon voyage buddy 💪💪💪👍👍👍🌈🌈🌈❤️❤️❤️

timotur profile image
timotur

Your resolve is admirable. God speed...!

treedown profile image
treedown

Hope it turns out better than your wildest dreams. Safe travels.

Charlie-2018 profile image
Charlie-2018

I am wishing you success in this. Though I don’t know the developments in the USA about PSMA PET CT my father has had numerous scans in the past few years the next one is on Monday 7th of December in Vienna Austria. He is being treated for mCRPC and so far has had 3 separate treatments with cabazitaxel each 6 cycles, zytiga and 2 separate chemotherapies with docetaxel. He has been fighting this since 2004. Although he is doing fine now PSA stable at 4, the doctor is preparing the ground for Lu177. He has very little bone involvement however his lungs have been affected the most so far he has had 3 lung resections and a craniotomy for his brain metastasis. I wish you all the best on your journey!

Be safe.

Charlie-2018 profile image
Charlie-2018 in reply to Charlie-2018

Also I forgot to mention, I know a doctor in Nebraska Omaha Luke Nordqvist that has a cancer clinic he offered for my father few years ago to treat him with Lu 177, haven’t you checked him.

Cleodman profile image
Cleodman in reply to Charlie-2018

Hmmm that is odd really. LU 177 is not available in the United States other than in clinical trials which are only 3 at the moment and impossible to get into. LU 177 is not FDA approved here despite its use in Europe and Asia since 2015. The PSMA PET CT scan has just been approved and that is just imaging to see if you have the needed antigen and not the therapy.

Charlie-2018 profile image
Charlie-2018 in reply to Cleodman

gucancer.com/meet-dr-luke-n... him, my conversation with him was beginning of 2019 where he said he could try to get my dad on LU 177 PSMA in trial if we could realize the logistics coming to USA.

He was very helpful for us, I initially contacted him back in 2014 if I can recall right, for a second opinion.

PCHuskers profile image
PCHuskers in reply to Cleodman

Dr. Nordquist and his clinic were first in the World to administer the LU 177 on trial. Believe they are now handling quite a few RadioPharmaceuticals. Very respected in Omaha, I would say one of the leading expert in US. Wishing you all the best.

gucancer.com/theranostics-r...

greatjohn profile image
greatjohn in reply to Charlie-2018

this place in Nebraska offers LU-177? That would sound too good to be true? I looked them up and plan to call on Monday, but maybe I am misunderstanding what you have said? thanks for any help.

Charlie-2018 profile image
Charlie-2018 in reply to greatjohn

Yes, we were offered LU177 by Dr. Luke (on trial, at that time) so please try to get in contact and let us know how it goes. Good luck!

HopingForTheBest1 profile image
HopingForTheBest1 in reply to Charlie-2018

Did the Cabazitaxel have any better or worse side effects than Docetaxel?

Charlie-2018 profile image
Charlie-2018 in reply to HopingForTheBest1

My father did not experience any side effects when he was on docetaxel, cabazitaxel the first time around also walk in the park not even need for neulasta. The two other times he was on cabazitaxel very severe side effects with neutrophenic fever and hospitalization severe nausea.

Chask profile image
Chask

I wish you all the best, and I almost envy your trip to India, though I also would have liked you to come and have Lutetium treatment here in Australia. (No Covid here in Oz). I guess India will be cheaper. Last figures I heard for Australia was A$7,000 per treatment, (US$5000) but that was a special short term reduction from the normal A$11,000.

I am not yet ready for Lutetium and my Oncologist tells me there are a lot of clinical trials opening up after the government made a big donation to Lutetium research.

I just had a PSMA scan at a cost of A$700. Good to see it is opening up in the US.

Cleodman profile image
Cleodman in reply to Chask

I went to medical school in Adelaide between 1998 and 2001. I even returned to work in the Blue Mountains for 10 months in 2008 so Australia has a special place in my heart. Yes I would have jumped at the chance to be treated there for sure but my decline and sense of urgency took over. I have pain now, my imaging looks terrible and fatigue is getting the best of me. Plus from poking around a bit your borders are closed to non-residents right? Emergency medical visas are possible but the process seems to be lengthy. I want to (hopefully) decrease my metastatic disease burden with at least getting this initial treatment started and we will see about the subsequent treatments in 2-3 months.

New Delhi costs are $5700USD which is all inclusive other than flights.

Chask profile image
Chask in reply to Cleodman

I can fully understand your sense of urgency and yes you are correct, getting across our borders - especially from high Covid burden countries like the US - is difficult. You have clearly explored your best options and I really wish you well. I trust all works out well for you. Lutetium certainly shows great promise and there are some excellent videos on YouTube especially from Michael Hoffman who has pioneered a lot of the work at the Peter Mac hospital in Melbourne.

pilot52 profile image
pilot52

You may want to stay at the Westin, that is where Charlie and I stay, close to Fortis. Manav( Fortis) will have someone transport you to the Westin and get you through the airport...Make sure you have you travel exemption form with you and always have your boarding pass available . The put several stamps on it and will not let you exit the airport without it...The Westin has drivers that take you back and forth to Fortis...I am sure other hotels are similar...Blue Skies..

Cleodman profile image
Cleodman in reply to pilot52

Dr. Sen was suggesting staying at Taj Vivanta City Centre as it is next door and then on my invoice there is meals and accommodation provided so I am a bit confused.

pilot52 profile image
pilot52 in reply to Cleodman

Hey go for it...Charlie is a United Captain and found the Westin on his own...Our only experience is the Westin and we know everyone there...A walk next door would be easy and Dr. Sen would not steer you wrong.....cheers! Blue Skies

Schwah profile image
Schwah

What about the one at UCLA? Is there a long wait for that also? It would be nice to know if you lit up like that Christmas tree before traveling that far. I just read your profile damn you’re freaking too young yo have to deal with this beast so sorry brutha

Schwah

Cleodman profile image
Cleodman in reply to Schwah

I have not tried but I am assuming it would be worse with the bigger local population. I have a medical record at UCSF so it was easy to request an order to be placed here but I have heard nothing in several days. I know...it will be heart breaking to go that distance and be told that I don't have enough PSMA expression but I am taking a leap of faith. I would wait but this pain is getting to be a problem so I think I need to act now.

Shahbazahmedazmi profile image
Shahbazahmedazmi

All the best. I hope it will work out for you.

If you would still be there in India in early April. We could possibly meet up, I would show you some parts of Delhi and you could describe your experience with LU 177 as it is soon going to come for my father and I would like to have knowledge about it from first hand experience.

Take care and best of journey.

Sam1962 profile image
Sam1962

Your decision to travel to India is the right one. From what I have read, this treatment has great results. It’s a magic bullet. You are young and it is likely to be effective for you. If it’s was my husband going for this treatment (and he will at some point), I. would have him get the treatment regardless of the PSMA results. Why wait until you have multiple hits on the PSMA? Be aggressive and think positive - always. You will want to have your oncologist give you a treatment card and paperwork for traveling since the radiation will remain in your body and you will be stopped by border patrol / security in the airport which can be intimidating and cause delays. If they have evidence you are having treatment you won’t have any issues. Stay strong.

SuppWife profile image
SuppWife

I’m so glad to hear this and I’ll be praying for you. Safe travels and Godspeed.

NOCanceros profile image
NOCanceros

HelloMay be this treatment cheaper than heidelsbergs university hospital in Germany,Quality.......! Good Luck

Cleodman profile image
Cleodman in reply to NOCanceros

It is cheaper and they are ok not having a PSMA scan done before accepting to see you. University of Heidelberg wanted me to send them a copy of my PSMA scan which is so difficult to get here in the United States...

TJGuy profile image
TJGuy in reply to Cleodman

Cleodman. Best of luck to you! I will be pulling for both of you on your travels and treatment(s).

I've had two PSMA scans, one at UCLA 2018 the other at MAYO Rochester MN 2019. Both clinical trials.

Both facilities promptly mailed me a disk of my scans. I made the request before leaving after the scan.

No cost for patients if I remember correctly.

TJGuy profile image
TJGuy in reply to TJGuy

Oh, and I believe I had the scan from UCLA sent directly to two different cancer hospitals free of charge as well.

cesces profile image
cesces

"I guess India will be cheaper. Last figures I heard for Australia was A$7,000 per treatment, (US$5000) but that was a special short term reduction from the normal A$11,000."

I thought the Australian costs were much less.

What are the Indian costs?

Even still, with the Covid situation, there is a case for hunkering down in Australia for a few months. Unlike the US and India, their government and their people have done an effective and responsibile job of dampening it's spread.

Of course India has an excuse. Loony USA, with delusional minority of conspiracy theorists in charge, not so much. LOL

So how did you weigh your choice?

Cleodman profile image
Cleodman in reply to cesces

I contacted multiple sites.

Several in Germany directly or via BookingHealth (which is the most expensive route but the quickest).

Sheba Hospital in Tel Aviv, Israel (the international contact there does not communicate fast enough for my liking but is very pleasant) and the cost is far less than Germany but quarantine rules are pretty strict. I think this may be the cheapest overall as I was quoted $10000USD for the "entire treatment" but again I never received confirmation on this.

CloudHospital Company for South Korea but I have yet to hear anything from them.

I poked around Australia which would have been my first choice because I trained in their healthcare system but I really did not have any contacts or a starting point and I believe the borders are closed now.

ABC hospital is Mexico City. Still no response.

India with another health booking company. Never heard anything from them and then their is Dr. Sen in New Delhi who has be so great. As I doctor myself I understand how busy they can be but she responds to my emails right away and has never put up any obstacles. My letter of medical necessity was issued in 72 hours and she was fine me asking to come 1 week before the date that would work best for me. The cost quote is $5700USD and that includes all pre and post treatment scans and from the looks of it accommodation and food (although we may stay somewhere else).

If I was doing a bit better and felt that I had more time I may have waited a bit but I just don't think that I would be in a good position in 2-3 months from now (overall health, pain and stamina wise).

cesanon profile image
cesanon in reply to Cleodman

Yep, that's the problem with forced decision making.

I got lucky when I was first diagnosed, and accidentally made of few good decisions.

It seems like it shouldn't be that hard for people to maintain minimal standards of customer support, but apparently, it is.

Just think what a competitive advantage it would generate is someone out there would do that.

charlesual profile image
charlesual

Good on you and your family taking measures to tame the beast. I’ve been to India twice now. One more in January to go. I had four lesions and PSA that was rising rapidly. PSMA scans can no Longer light up the lesions and my PSA has dropped to the undetectable range. Counting my blessings and hoping the same for you. Pilot52 has done a good job of describing the logistics of traveling to India. The only thing I would add is this isn’t really the time to play tourist. Covit19 is spreading rapidly there and the government is letting us in on emergency medical visa only right now. The last thing you would want is to end up in a Covit ward in India or bring it back to the states.

Thumbs up for the Westin. They take really good care of us. Bring some good books, chill by the pool, eat some great food. (Satoosh will make you some amazing meals) Dr Sen is awesome!

Reach out if you have any further questions.

seeker47 profile image
seeker47 in reply to charlesual

How much was your PSA when you started with Leutiem?

charlesual profile image
charlesual in reply to seeker47

4.5 doubling every month.

Justcallmeamy profile image
Justcallmeamy

All the best! Make sure you have you travel Visa...India can be VERY hard to get into.

leo2634 profile image
leo2634

Wow Brother what a giant leap of faith. I'll be praying for your recovery and safe return. Leo

Bangkok profile image
Bangkok

Good luck with your treatments but the beast isn't all you need to worry about. India has over 200,000 Covid cases a day. That's why I picked Thailand for my treatments. They have had 11 cases in the last 3 months.

ronronHU profile image
ronronHU in reply to Bangkok

We are also doing a pretty good job of treating Covid cases...60 deaths in a country of almost 70,000,000 people!

Biteson62 profile image
Biteson62

Are you in pain? Cesium Chloride is a last resort approach that has helped/cured many late stage cancers in the past. I'm doing it now and will report on impact to my metastatic prostate cancer cancer. It's a companion protocol IMO. Good luck!

Cleodman profile image
Cleodman in reply to Biteson62

Yes I started getting mid back and diffuse pelvic pain about 2 weeks ago. I never had any bone pain with my bone mets for 3.5 years until now. The pain was also a reason to start this treatment sooner rather than later. My disease burden is getting a bit too much to ignore now.

Charlie-2018 profile image
Charlie-2018 in reply to Cleodman

Isn’t it said that Lu177 works better on soft tissue metastasis, and Radium 223 on bone metastasis, that’s what we were told at the hospital where my father is treated (Austria) do you know how is your status with metastasis

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

Hope everthing is successful.... Just for your info, this trip there's a Bengal tiger looking for you.....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 12/04/2020 11:01 AM EST

WSOPeddie profile image
WSOPeddie in reply to j-o-h-n

No problem. Do like the natives and wear a mask on the back of your head. Tigers are sneaky except when they know they are being watched.

Armywifedublin profile image
Armywifedublin

The very best to you. Your in my prayers. Safe travels to you and praying for great results! Believe me we would be doing the same if my hubby was in the same situation.

Please be safe!!

KSK54 profile image
KSK54

Cleodman

welcome to India. I am in Gurugram, just 30 minutes away from the hospital. Let me know in case I can be of any help.

I and my wife will be happy to meet and host you for a dinner or lunch as per your convenience and time schedule.

Best of luck for your journey and treatment.

Mob

9999988309/308

Cleodman profile image
Cleodman in reply to KSK54

You are very kind but with COVID I think it would be best to limit any social exposure. Thank so very much though!

Good luck & good health... We just finished two radium 223 treatments, cancer has spread further. We've discontinued and are just trying to wait out LU177 coming to Mayo. All the best to you and will be waiting to hear how you feel!

Pianodude profile image
Pianodude

Good luck with your treatment adventure. I hope it works well.

Curehunter profile image
Curehunter

Good on you Cleodman, hope you get much success with your treatment.

FinalBossMatt profile image
FinalBossMatt

Good luck man. With my luck I'd be going to India for Lu177, cancer goes into remission, I come back with Stage 1 lung cancer from the pollution there haha.

Seriously though, I hop you get out of the hospital now and then and enjoy the country. I'd be interested in the pricing for it in India as well even though I won't need it for quite sometime.

Blueslover profile image
Blueslover

Best of luck to you

Chugach profile image
Chugach

Hammer the shit out of it!!! Stay strong brother!!!

Faith1111 profile image
Faith1111

I have been praying for you and following your posts. You are way too young for this as is my brother. I am so happy you have decided to do this. Safe travels and keep us posted!

Bryanbhai profile image
Bryanbhai

Hit the beast hard ...have a good result bro ...stay safe stay alert

bluesnjazz profile image
bluesnjazz

Best of luck to you, but I'm wondering why you have to go to India for the treatment since the FDA (if you live in the U.S.) approved it nearly 3 years ago.

Cleodman profile image
Cleodman in reply to bluesnjazz

LU 177 is not approved by the FDA. It may be approved by mid 2021. They just finish phase 3 clinical trials over the last few years.

bluesnjazz profile image
bluesnjazz in reply to Cleodman

Ah, you're right--the former approval was for a different type of cancer.

Niiiiit profile image
Niiiiit

Which hospital in India did you get the Lu 177 treatment and what was the cost for each treatment? Please share as my father has advanced prostrate cancer and nothing else is working and he is being recommended lu 177 treatment.

ggid profile image
ggid

How did the treatment in New Delhi work for you? How many treatments have you had?I am leaving to have my 1st treatment soon. Please contact me, Gary Giddings on Facebook.

Eugmn profile image
Eugmn in reply to ggid

Hello ggid. My name is Danny. I have also been going to Delhi for the Lu177 treatments. Looks like I started around the same time as you. Just wondering how everything is working out for you. I leave for my 3 rd treatment this week

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