Excellent Response LU177 New Delhi, I... - Advanced Prostate...

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Excellent Response LU177 New Delhi, India

paige20180 profile image
78 Replies

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 him the care he would benefit from the most. Not every man has a doctor like that. I am so appreciative for ALL of our doctors. The paperwork to get permission to travel to India, is not the easiest thing I have done, but is possible.

I owe Fuzzyman77 for everything. Many men on this site for giving me such excellent advice! 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. I just have so much gratitude for him and for so many people that got us to India and have given me more time with my husband.

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.

Take care everyone.

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78 Replies
Longterm101 profile image
Longterm101

Thats great news!!! How many treatments will he get? Will you stay for a while or travel back and forth. Please keep us posted. All the best

paige20180 profile image
paige20180 in reply to Longterm101

Hi Longterm (cool name)

He received two treatments so when he went back to Delhi for his final third treatment 3 days ago, my husband had ZERO visible tumors! Dr Sen suggested they use 2/3 of the dose she had planned for his third and final treatment to mop up anything PSMA could not see.

Our routine has been to depart on Saturdays. Do a PSMA Sundays and treatment on Mondays. Tuesday is a day to rest at the hotel. Wednesday is a scan and we were leaving that night on United 802 Delhi-Newark that night. Dr Sen has requested he stay until Thursday for one more scan to help with research. It's the least we can do. My husband is still hormone sensitive so he can provide information how men are doing having treatment earlier in the course of treatment. Husband Charlie has never had chemotherapy.

Dr Sen recommended three treatments 8 weeks apart, but Charlie went 10 weeks between the 2nd and 3rd treatments. Little issue getting through Newark since he was still putting out a lot of radiation. So have a letter.

No further treatment necessary. May go back in the future if he needed a $400 PSMA? As an airline pilot maybe the FAA might want one? But no reason to go back after three treatments where we stayed less than a week 8-10 weeks apart.

I sure will continue to share how he is doing. Dr Sen did say she has a few men she treated in 2017 worse than Charlie was, that still are in remission she follows. She said Charlie had an unusually excellent response and expects him to do as well as them if not better. We aren't used to that! He was told my a very respected MO he would live 5 years probably but not 1 day past 8 and "nothing any doctor anywhere could do about it." (I plan to let him know how I feel about saying that to men in 4 more years) . My point in saying that is please, please don't give up men. We have had several set backs and haven't had a break since diagnosis in 2017. Don't let someone discourage you from following your gut or your pursuit to live!

Bob10 profile image
Bob10 in reply to paige20180

When the hell is Lu177 going to be approved in United States

in reply to Bob10

We are at Mayo PHX, they are hoping to have it in Q2 2021

Pcnmyy profile image
Pcnmyy in reply to paige20180

Hello paige and congratulations to you and your husband for these great results. Thank you so much for sharing your story with us on this wonderful forum.

You mentioned in your post that your husband is still hormone sensitive and he never had chemotherapy, right? Well, my case is similar to your husband, but Germany wouldn't accept it for LU177 treatment. They said I have to be castrate-resistant to qualify for the treatment. I guess my question is if your husband is still hormone sensitive, do you know why ADT did not control your husband PC/PSA?

Fantastic. Thanks for giving us hope

greatjohn profile image
greatjohn

I'm so thrilled and delighted for you both. I (during this past month) have been talking about the logistics of going to India for this...I've already done chemo, radiation, xtandi...and the single bone met has spread to 7 or 8 (small ones still) but I need to do something sooner rather than later. My PSA last month just doubled from 10.5 to 20.9 (in one month). It's time for a "road trip"...LOL. I've been to New Delhi and it's a manageable sized city (compared to Mumbai) AND close to the Taj Mahal. I will be sharing your letter with my oncologist on Thursday. Is there anything else you can tell me I should do? My big problem is my new husband will most probably NOT be able to travel with me due to his recent dementia diagnosis. Going alone sounds scary.John

paige20180 profile image
paige20180 in reply to greatjohn

HI Great John. That is great you have been to India so you aren't intimidated by it being a little different than the US. I really understand how going alone can be scary. I went with Charlie the first two times. The third time, he went on a man pilgrimage with a gentleman from this site. An hour ago I had to let them go when room service showed up with the celebration bucket of beer lol. Both are elated with their results. I felt comfortable staying at home this time knowing Charlie had a fellow buddy from this site. I could get over in an emergency having the Visa exemption for serious medical condition. That's how comfortable I felt not going this time. It would be hard on your husband too I bet. I would recommend taking a friend or relative at least the first time to ease the worry.

Our friend did a great job getting Fortis to streamline care. For example, Charlie needed a caretaker to pay bills while he got treatment since we are international cash patients. His friend that's with him has done all treatments without a caretaker and did a brilliant job getting Fortis to cater to that. But still try to take someone the first time and you'll feel better or please write Dr Sen and staff and see if they have suggestions. I'm sure they would not mind me sharing their emails considering how great they communicate..

info@nuclearmedicinetherapy.in

Mr Manav Sadhwani

dr.ishitasen@nuclearmedicinetherapy.in

Dr. Ishita Sen

Our doctor at Duke works directly with Dr Sen. Dr Sen will write your MO in the US and work in congruent with him if he has any questions. It may be a great experience for your US doctor to have this experience with a doctor that trained at MD Anderson that has provided LU177 treatment for many years.

All the best Greatjohn. So glad you are on top of getting that PSA under control.

If you go, I suggest a consult on Dendritic Cell Vaccine Therapy at Fortis and meet Dr Kumar at APAC Immunotherapy. They have a website to look at.

greatjohn profile image
greatjohn in reply to paige20180

I feel blessed and am humbled by your wonderful reply! Thanks from the bottom of my heart!gJohn

Fuzzman77 profile image
Fuzzman77

It really warms my heart that Charlie has done well! I get the intimidation about going to India. I admit I was afraid of being somewhere so far away, not knowing a soul, and not knowing if what I was doing was even smart. But everywhere here had given up on me so I went in my case to have the APCEDEN vaccines. If and when it comes back on me Dr Sen and Fortis is where I directly will go. For me It was the right decision. I know there’s no guarantees, but I knew what the guarantee was here, and it was not something I was willing to just watch since I was fortunate to be able to pay out of pocket. India is very reasonably priced and I was treated very well. I just wish you could have gotten to get out and mix with the people there. Overall they are wonderful people. There’s some bad apples just like anywhere, but they really want to help you there. Someday we will all have to meet Paige after COVID is in the rear view mirror enough. By the way I am still NED after having 30 tumors when I first went to India in March, 2017. Fly the friendly skies from Newark!!

paige20180 profile image
paige20180 in reply to Fuzzman77

Can"t thank you enough CM for all of your mentorship and guidance when we were unable to go anywhere else due to Covid. It was a blessing in disguise. Well said there are no guarantees, but Charlie and I will know we tried. I am so thrilled you continue to beat PC and still have tools in your tool box. Thank you again for the hours you spent pointing me the right direction!

Tall_Allen profile image
Tall_Allen

Great news! Thanks too for this important post.

paige20180 profile image
paige20180 in reply to Tall_Allen

I really appreciate you too TA. Thanks for all of your experience and solid responses.

RyderLake2 profile image
RyderLake2

Hello from Canada, I think I met your husband Charlie at the PCRI conference in Los Angeles in September 2019. We hung out together for a couple of days and talked at length about Germany and Lutetium. We had a lot of fun in L.A. along with Shanti from Florida. When Charlie gets back, tell him I am just thrilled to hear the news. Charlie is a trail blazer for so many of us who may have to follow in his footsteps and who might be wondering how to do it. Once again congrats! Amazing news!

paige20180 profile image
paige20180 in reply to RyderLake2

What a team. I"ll be sure to tell Charlie. Thanks!

charlesual profile image
charlesual in reply to RyderLake2

Hello my friend, I’ve thought of you often. Did you ever end up getting treatment? Shanti and I marveled about you having spontaneous remission.

RyderLake2 profile image
RyderLake2 in reply to charlesual

Hi Charlie, We are doing a happy dance for you here buddy! It took courage, real courage to do what you just did getting medical treatment in a foreign country during a pandemic. I am doing well, turned 75 last year. My PSA, for reasons largely unknown, continues to remain at the almost undetectable level. It has been that way ever since I returned from Germany w/o the Lutetium treatment. The last couple of months it has been at 0.011. The scans here consider anything less than <0.008 to be undetectable. At the end of May it will be eight years that I have been battling this beast. In 2013 I thought I had eight months! If you remember my initial PSA was just under 1700, Gleason 8 and extensive bone mets. It just goes to show you never can tell. My plan is to try and hang on until my PSA reaches 3.0 or 4.0 and then return to Germany. If they don't accept me there I will try India, England, South Africa, Australia or somewhere. I guess I am open to everything and anything. Hopefully by the time my PSA starts climbing, the VISION trial will be over and Lutetium will be widely available in the USA and Canada. Stay in touch and safe flight home! Once again fantastic news!

HerbieP profile image
HerbieP

Hi Paige, I'm at Duke Cancer Institute too. Which MO are you working with if I may?

paige20180 profile image
paige20180 in reply to HerbieP

Thang and Dr Kwon at Mayo. We are transitioning more to Duke.

charlesual profile image
charlesual in reply to HerbieP

Dr Tian Xhang

Curehunter profile image
Curehunter

Thanks for the post. It's fantastic news. Keep us updated!

tango65 profile image
tango65

Glad to know things are going well. Best of luck!!

wagscure259 profile image
wagscure259

Great news and great encouragement. I pray the good response continues for years, as you guys (and quite frankly all the brother warriors here) deserve some viable and efficacious advancements in treatment. Thank you for posting!

jdm3 profile image
jdm3

Congratulations! Thanks for the update. Good to know Charlie and his traveling companion (who I've kept in touch with) are doing so well. Made my day.😊

tallguy2 profile image
tallguy2

Thanks for this inspiring post and congratulations on the excellent outcome. It goes to show that, with your own research and the means to travel anywhere in the world effective treatments are available.

LearnAll profile image
LearnAll

Thank you for detailed update. I have been going to Fortis Hospital for last 15 years for full medical check up every time I went to India. Your post helps people like me .. who might require LU177 some day in future. I know every street of New Delhi . Best wishes to Charlie for a very long remission..at least a decade.

lewicki profile image
lewicki

Great results. Continues to puzzle me as to why you need to go outside of the U.S. for this.

Fuzzman77 profile image
Fuzzman77 in reply to lewicki

$$$$$$$$$$$$$

lewicki profile image
lewicki in reply to Fuzzman77

Makes much sense.

paige20180 profile image
paige20180 in reply to lewicki

Not available as a treatment unless in a trial? Not FDA approved. Charlie could not wait. Hi Lewicki. Not willing to wait and see if you get into a trial as a blazing hot tumor grows like wildfire on your spine about the compress your spinal cord with radiation exhausted.

I may be a control freak and want treatment instead of giving control to others when in the hind we were in.

lewicki profile image
lewicki in reply to paige20180

I am with you .

Fuzzman77 profile image
Fuzzman77 in reply to paige20180

Hey, are you calling me a control freak on my treatment!! I resemble that remark!

Fuzzman77 profile image
Fuzzman77 in reply to lewicki

Puzzles me as I had my first PSMA PET scan in March, 2017 in Delhi as SOC there. Who knows how long before that they were doing them as SOC. It was the first thing they did there to see where I was. It definitely makes decision making easier since you get more information from the scan. I wish I would have gone there when I was first diagnosed.

lewicki profile image
lewicki in reply to Fuzzman77

It seems American hospitals have to much money tied up in there present SOC is the reason a PSMA scan still is not available as SOC.

Fuzzman77 profile image
Fuzzman77 in reply to lewicki

You just hit the nail on the head Lewicki. Guess who has the largest investment in all the diagnostic equipment in our country. One guess.

in reply to Fuzzman77

Hunter Biden?

Fuzzman77 profile image
Fuzzman77 in reply to

If he’s a medical doctor then yes.

in reply to Fuzzman77

In 4 years he will be.

lewicki profile image
lewicki in reply to Fuzzman77

Rockefelow

TJGuy profile image
TJGuy

Hi paige20180

I have been thinking of you and Charlie often over the past number of months. Waiting and hoping for good news on Charlie's treatment. I'm thrilled at your positive report.

I have a few questions or more than a few I guess that might help some of us in the future.

You mentioned paying as a international "cash patient". Can I assume credit card payment is how that can be done and you don't have to carry greenbacks or wire funds.

So you mentioned $400 US dollars for a PSMA scan at Fortis hospital that is fantastic.

And it looks like a "visit" would include a PSMA scan before the LU-177 therapy, the therapy itself, and a PSMA scan following treatment.

Each subsequent "visit" is similar to the first in that it contains the scan, the therapy, and a followup scan?

I understood the third visit in your particular case had two scans post therapy but that was an exception for research purposes.

Were all scans PSMA or were they using something else as well?

Are CBC bloodtests and PSA performed at each visit.

For the costs involved, is $5,500 US for each "visit" as I described above including hospital stay, or do you return to the hotel each day? Or just the therapy portion?

It seems like Charlie's treatment went spectacular and he won't require any additional treatment at this time. But when you first met with the Dr was there any discussion of AC-225 use? Or adding immunotherapy such as Veyonda? Or gene tests?

Do they require a minimum PSA for treatment? Or bone mets? Or just something showing on the PSMA scan bone, lymph node, tissue?

I know you and Charlie are excited and happy at the great news as we all are. I will be eagerly awaiting your future posts.

Thanks so much for sharing your news!

charlesual profile image
charlesual in reply to TJGuy

-Credit card accepted at Fortis and hotel. (Make sure you tell your CC company you’re going to India so

they don’t turn off for fraud. Greenbacks for tips. ATM for local currency.

One CT PSMA PET scan before lu177 treatment only. There are dosimetry scans that follow treatment. Same each visit.

Between treatments, I did CBC tests and forwarded to Dr Sen. They can also do them at Fortis.

Return to hotel each day.

I don’t know if Dr sen does AC-225. She can refer you to immunologist at the hospital. Not sure about Veyonda or genetic testing. Good questions for her.

I don’t think psa number is specifically qualifying to receive lu177 as you can have Met burden and still have a low psa. Good question for Dr Sen.

paige20180 profile image
paige20180 in reply to TJGuy

My experience is Fortis Memorial and Dr Sen appreciate this treatment earlier than later. Dr Sen has a lot of experience. We were rejected from being treated in Germany at a few hospitals because Charlie had never had chemo and was hormone sensitive.

TJGuy profile image
TJGuy in reply to paige20180

Hi paige20180. I haven't seen any update from you on Charlie since I guess January?

I was just at Mayo this past week. I had come off ADT in July 2021 after salvage PBLN and two years ADT.

Low PSA hit <0.01. But recently was 0.028.

So it all begins again, had Choline scan last week. Will go back next year when PSA climbs enough to find with scans.

Then determine next step(s).

Mayo said they are directing people to go overseas for PSMA LU-177 as not approved here at this time.

How has Charlies LU-177 treatment been holding up over the past year?

paige20180 profile image
paige20180 in reply to TJGuy

Hi. Immunotherapy was definitely discussed, but that’s down to read for Charlie and I understand is about to take a leap in advancement in the not so far future.

paige20180 profile image
paige20180 in reply to paige20180

Please look up Fuzzyman77 history for immunotherapy info. He’s an amazing living example of the work in India. Love what they are doing in Australia if you can gain entry.

babychi profile image
babychi in reply to paige20180

Thanks to you, Charlie and Fuzzyman for input. We have LU177 program here in Oz. India is in our hearts always. We would return today if it was possible but we are locked in!😰

lewicki profile image
lewicki in reply to paige20180

That is good to hear. Another arrow in our quiver.

Fuzzman77 profile image
Fuzzman77

You and Charlie did all the work. It takes guts to do it what you did. For me it was desperation I was in such bad shape. I know exactly where I’d be if I hadn’t gone to India when I did. I wouldn’t be here typing this for sure. I think it’s great Charlie and Pilot52 have had good results. By doing Lu177 earlier than most hopefully you’ll see a longer benefit. Pretty cool too that they have each other over there when everything is on lockdown. Happy New Year if it’s not too late to still say that!

timotur profile image
timotur

Fantastic story and thanks very much for sharing with us. Long live!

babychi profile image
babychi

So glad your decision worked out. India is a great country! Glad healthcare there is improving.

Fuzzman77 profile image
Fuzzman77 in reply to babychi

Heck, improving, it’s better than the United States. Sloan Kettering, Cleveland Clinic, and Rutgers said they had nothing for me anymore. Of course it is out of pocket so not everyone can do that. The darn vaccines I had made there came from technology stateside, but you’re not getting it.

babychi profile image
babychi in reply to Fuzzman77

When I lived in Himachal Pradesh lots of rich Indians went to Singapore, Thailand and Malaysia. 🌺

Gec659 profile image
Gec659

Wow ! I am so happy for you & to see good news after reading that the group lost a fellow member this wknd..

We Have heard about different treatments for advanced prostate cancer in India

Is LU177 a trial or a Standard of Care

Not sure If your hubby’s treatment was the same one that I read about .

What is the criteria to receive this treatment?

Who actually referred you and what is the process for acceptance for treatment ?

Thanks in Advance & again, I’m so thrilled that things are looking positive

Easey profile image
Easey

Congratulations unbelievable results. Can I ask as well whether Veyonda was used in combination because I'm trying to access this on compassionate grounds if psma avid

charlesual profile image
charlesual in reply to Easey

I can’t answer this. Maybe reach out to Dr Sen?

charlesual profile image
charlesual

Hello fellow warriors,

I’m the hubby getting lu177 in India. I’m in the process of writing a detailed blow by blow of the process of coordinating and traveling here. If you plan ahead you will have no problem as you’ll see In my write up. Don’t be intimidated to come here solo. Just prepare!! Some questions were asked about early treatment with Lu177, before chemo or low psa, I think this video will answer your questions.

urotoday.com/video-lectures...

Stay tuned for long post and don’t hesitate to reach out if need questions answered after my post.

in reply to charlesual

Hoping you will post your step by step instructions(please?) We’re hanging on every word and detail.

Patrick-Turner profile image
Patrick-Turner

That is good result with Lu177. But I had 6 doses, equally expert doctors here in Australia and I still had many mets in bones with small new ones which were not going to respond to Lu177. The great result you see now is only what is for now, so be prepared for later, and maybe needing more Lu177 in year. Docs would not let me have No 7 dose Lu177, and Psa is rising fast so I'll be trying Ra223 - when the doctor gets back from his holidays.

Good luck.

Patrick Turner.

paige20180 profile image
paige20180 in reply to Patrick-Turner

Hi Patrick. Please don’t take our elation as delusion. That all sounds like things we have heard before but we are embracing the idea, we may get a BREAK like some other men are Sen has that have been clean since 2017 but yes, we have more doses avail in the future if needed and this may kick the can as advances are made. We still have many treatments left.

India was a lifesaver when Australia and other countries would not treat men that were dying. We are posting to help many of us that can not get treatment during Covid

charlesual profile image
charlesual

India Lu177

Coordinate with Dr Sen and her colleagues at Fortis Memorial Research Institute. Sector 44 Gurugram, 122002, Haryana

+91-124-456-2200

Info@nuclearmedicinetheropy.in

Decision to go to India Logistics

Passport timeframe (1-2 weeks)

-need triple entry visa from Indian embassy. You can go in person or fedex.

Need

-medical letter of necessity

-Go on line google to airsuvida. (There are 2 documents that must be done in order to get a visa and depart on your flight and later clear customs in Delhi)

1. Fill out and print self reporting form

2. Fill out and print exemption form. (You’ll need to upload a picture of your passport and letter from Dr Sen describing medical necessity.

3. $100 & $10 money orders made out

Indian Govt

4. Google Airsuvida. Pull down menus

a. exemption letter (you’ll need to upload your passport and letter provided by Dr Sen)

b. self reporting form

(Print these forms for later use)

Set date for treatment

-Buy Airline ticket to Delhi

-Plan to pack light and carry on baggage for easy transition through Delhi airport. Also, best to have your meds with you. (Travel light and Plan on getting laundry done at hotel)

-Best to leave on a Friday (arrive Saturday night because you cross international dateline) and return Thursday.

If you leave the USA on a Friday night, you’ll arrive on a Saturday night. Why leave on a Friday night when treatment doesn’t start till Monday? Two reasons.

1. Allows you to recover from jet lag

2. Gives you time for travel issues like flight delays/cancellations. (Typically, you’ll have all day Sunday to enjoy relaxing for a busy day on Monday)

-Reserve Hotel 5 nights with late checkout on Thursday. Westin Gurugram (Approx $80/night or splurge for a suite.

When you deplane, you need to go through several steps in order to leave the airport property. To make things more simple Dr Sen arranges a concierge service. They’ll be waiting for you with a sign with your name on it when you exit the jetway. They will handle your passport and file with your documents. File of documents?

1. Passport with Indian visa in pages

2. Self reporting form

3. Exemption letter

4. Covit19 test taken within 72hours

5.. Boarding pass (don’t toss this!! In India they stamp it and will be a big hassle if you don’t have one. An electronic boarding pass is your backup but trust me paper boarding pass is best.

There are several stations and lines you’ll present your file. Your concierge will stay with you the whole way through the process and guide you through the terminal. He/she will put you in a taxi and tell them to take you to your hotel. The transportation has already been paid by Dr Sens colleagues and they don’t expect a tip, but It’s good form to show your appreciation. $5-10 to concierge would be plenty. Same for driver.

If you haven’t driven in India, it seems a bit crazy with bicycles, cars, tuktuks, tractors and stray animals. Theres a lot of honking but very few accidents. Think of it as part of your adventure. It’s a :20-:30 minute drive to the Westin Gurugram. Again, the taxi has been covered. There’s a security check going into the hotel property. India is generally very safe but there is a lot of poverty and rubbish. I personally wouldn’t stray beyond the hotel boundary without an escort.

Your car will be received by hotel staff and they’ll put your bags through a metal detector, check your temperature, and ask to see your passport and covit test. The front desk will make you feel very welcome and offer you much hospitality.

It’s late Saturday night so the restaurant is closed but room service is all hours and tasty menu.

Breakfast and dinner buffets are extraordinary. Check hours. The hotel property has a salon and full gym and lots of body treatment options. The pool was closed for covit reasons but sitting in chairs next to the pool is ok. Plenty of shade.

Coordinate with front desk for transportation to fortis hospital Monday morning. Mohon is their staff driver. He will drop you off and pick you up for a small fee added to your room. Tips appreciated. The driver speaks good English and will give you his phone number to text him for your return. TIP. My iPhone can text in India but check your carrier for details and fees.

Also, call your credit card company and let them know you are traveling to India so they won’t suspect fraud and disrupt card transactions. You can just get by on US dollars in India or there’s an atm in the hotel and hospital.

(Treatment starts Monday morning at 9:00) You don’t want to be late because it’s a long day and you beat the rush of patients that show up after 10am. Don’t forget your medical file. Scans, bloodwork meds...and bottled water from the hotel.

You’ll go through a temperature check and given a bracelet when you enter the hospital. Find your way down the escalator and follow signs to Nuclear medicine. Ask desk personnel for Dr Sen. The hospital is adequate but not necessarily what you’d see at most American hospitals. Dr Sen is very smart and also super personable. She will go over your medical treatment plan and turn you over to her staff to insert a cannula and prep you for imaging- injection of gallium for PET scan and fluids and fitted with scrubs. Along the way expect to sign lots of papers and break out your credit card. You’ll be sequenced into the PSMA PET scanner. After the PET scan you’ll be returned to a private room to await the injection of LU177. Lunch is vegetarian and just ok.

When they inject the LU177 there’s a slight stinging sensation but not bad. I had no adverse sensations. You’ll continue to receive IV fluids. Important!! Stay very hydrated!! After the injection, you’ll chill on a bed for about 1-2 hours. You’ll then be wheelchaired back to Nuclear medicine for docemetry scans. Empty your bladder before scan because you are getting lots of fluids.

I had my wife with me but she did a lot of sitting around and wasn’t really necessary for her to be there aside from interfacing with Dr Sen and paperwork. One option would be to just stay at the hotel or ask Mohon for a drive tour of Delhi. The Taj Mahal is about :45 minutes drive but since your are visiting India on a medical visa, you’re not expected to play tourist or risk getting exposed to covit19. I decided to just stay close to the hotel. Mohon is very resourceful and can take you to some uncrowded gift shops or negotiate needed items. My friend had him pick him up a local smart phone which came in handy for using the India with social distancing app Aarogya. He can also pick up an India chip for your own phone.

Back at the hotel, the restaurant staff is very friendly but sometimes need to be nudged that you need a secluded table. The head chef (Satush) takes a lot of pride in making you feel special by personalizing your meals. The buffet is outstanding and breakfast is complementary. Room service is also a good option. Greek salad is delicious. They offer laundry service and complementary water. The air quality can be pretty bad but the price is right. The lu177 treatment cost about $5500/ea. Hotel and airfare, and miscellaneous. You’re all in between $28-38k for 3 treatments depending on business class and hotel suite.

Feel free to reach out if you have questions email Dr Sens colleague named

Manev. manav@nuclearmedicinetherapy.in

tennis4life profile image
tennis4life in reply to charlesual

Wow, thanks for the details!!! Just got back from Vienna and 3 infusions. Need a lower cost alternative should I need additional LU177.

keepinon profile image
keepinon in reply to charlesual

Thanks for taking the time to do this. I printed and filed it for future reference when the time comes. Congrats on the great results!!!

charlesual profile image
charlesual in reply to charlesual

Return to states. Plan on wearing a mask for a long time. I double mask on plane and congested areas. I also bring earplugs or AirPods.

Important!! Make sure you get a letter from Dr Sen that you just received medical treatment that may set off alarms going through US customs. (Sometimes you get through sometimes your get detained)

Check in for flight within 24 hours. Either screenshot your boarding pass or have front desk print one. Plan on late check out with hotel.

-Coordinate transportation to airport.

-You need a boarding pass and passport in order to enter the terminal.

Tip. I like to get a to-go meal from the hotel restaurant vs lousy airline food.

Once in the terminal, look for your flight on departing flights monitor. If not checking bags proceed to passport control. This is where someone stamps your passport and boarding pass. Depending on the line, this can take between:15-:30 min. You’ll proceed next to security screening. Again, plan :15-30 min. Put your bags, shoes, belt, phone, laptop, (no liquids) on the belt for X-ray screening. You’ll do this again when you get to your gate to make double sure. Don’t forget your phone. Tuck your passport somewhere safe!! You’ll show it one more time to gate agent. You will next be vectored through a bunch of duty free stores for last minute gifts, alcohol and cosmetics. Pick up a bottle of water or two. Remember you need to drink a lot of fluids after treatments and you won’t need to beg flight attendant for water. The airport is huge so don’t forget to look at the time and miss your flight. Remember you still have one more security screening. I try to plan on getting some sleep flying home. Melatonin works for me. I also wear comfy clothes and bring some slippers from the hotel for the disgusting airplane lavatories.

After you deplane, if possible hurry off and hustle to customs control or you’ll possibly get stuck in a long que waiting to show your passport. There is random screening for bag checks after customs checks your passport. After you get through international customs if you are connecting to a domestic flight, (sometimes a hike) you’ll need to be rescreened so have your boarding pass and passport handy. You’ll be glad you knocked yourself out in the flight or you’ll be hitting the wall about this point.

A couple reminders, Dr Sen sends you home with a packet of imaging slides and disks that probably won’t fit in your suitcase. Don’t leave them on the plane.

Sometimes Lu177 has temporary side effects like dry mouth or lack of taste. Biotene lozenges help. Also, I had some constipation so maybe have relief meds or probiotics handy. Not a bad idea to carry Advil or Tylenol too. You’ll be back in 6 weeks for another treatment so pace yourself. I got great results in 3 treatments in India. I see other places that do more then 3.

Hope this helps.

Charlie

Fuzzman77 profile image
Fuzzman77 in reply to charlesual

Charlie, if you ever need to stay there longer you can exchange dollars for rupees at 20 Jacaranda Marg. They sell train tix etc there. The owner does not speak English but if you show him US dollars he understands with no problem. He has by far the best exchange rate. You might be one mile at most from there, and it is just a couple of blocks from APAC Biotech at 69 Jacaranda Marg that made my vaccines. They have a bunch of posters in the waiting room to do the vaccines before you have a relapse to help prevent one while your tumor burden is lowest. They have had some amazing results with the vaccines for prostate cancer. It isn’t a huge facility but they have a clean room downstairs where they make the vaccines. Dr. Chaitanya Kumar showed me around and explained a lot to me. May even be worth visiting if you have time. Crazy that what I did and what you have done is only about 10 minutes apart and really can help guys like us. I like that they will do it early as they believe better results are possible. I have walked all over around where you are and although it does look sketchy in some places I honestly never had any problems at all. Those that speak English are very inquisitive and enjoy talking to Americans. The big mall at MG train station is super modern. I know you can’t really go there now. When COVID passes my favorite part was staying with families and getting to know people. Most will cook for you for a nominal fee. I had use of laundry facilities etc. you’d be surprised how plush some of those concrete houses are inside! LOL Dr Sen spent quite a bit of time talking to me when I was considering Lu instead of a prostatectomy at Medanta. I hope I never have to meet her in person but glad she has taken such good care of you guys. Glad you and Pilot took the chance. It’s nice knowing there’s places just waiting to help us when they give up on us here or to do it earlier. If you like a really quiet secluded beach Neil Island in the Nicobar and Andaman Islands is incredible. The seafood is great and I even went SCUBA diving there. Obviously I can go on and on. Would like to go back just for fun.

charlesual profile image
charlesual in reply to Fuzzman77

Thanks fuzzman77. I did meet with Dr Kumar. Great conversation with him. As I understand it, APAC needs to extract about a gram of the specific pc cells in order to make a specific vaccine that wakes up your own immune system to see and repair your specific cancer. Is that about right? I know you’ve had incredible results. I never thought to ask my surgeon to cryo preserve my prostate and at this point my bone Mets are too small to extract a sample but I will definitely reach out to them if/when I have a recurrence. You are a pioneer doing what you did and the results you got. I believe this is the future for treatments we are all waiting for. Thank you so much for sharing your story with us. I really can’t wait for covit19 to be over. I would love to come visit you and see your llamas.

This is so helpful and hopeful for many of us. Wonderful news. Thank you a thousand times for sharing. 😆👍

mangeycritter profile image
mangeycritter

MAGNIFICIENT!!

Faith1111 profile image
Faith1111

Thank you so much for sharing such informative and positive news! So wonderful to hear!

Dale150 profile image
Dale150

Awesome news!! Thank you for sharing.

Marge65 profile image
Marge65

That is amazing. Thanks for sharing. All the best to you! ❤

MateoBeach profile image
MateoBeach

Just wonderful. Congratulations to Charlie and you. This is so heartening for me as I am also HS and waiting for my next PSMA scan to see if it is time to go. Your guidance is invaluable. Thank you!🙏🏻I have traveled in India and gone on Pilgrimage and hope to do so again when safe to do so. ( Getting COVID vaccine now so that may be this year). Where did Charlie and friend go on their pilgrimage? Namaste. Paul

paige20180 profile image
paige20180 in reply to MateoBeach

Forts memorial for lu177 at the same time

Shanti1 profile image
Shanti1

Hi K + C, Robbie and I are thrilled to read this post. We have been rooting for you and know it took a lot of courage to push the boundaries of medicine and go against some expert advice for early Lu177. And then to have it done in India besides! Thanks for sharing all of your experience and results here. Maybe others who otherwise couldn't afford Lu177 or Ac225 will feel brave enough to consider India. Sending you both big hugs

❤️

paige20180 profile image
paige20180 in reply to Shanti1

Without you Shanti and all the expertise you shared with me, I don’t know if we would have considered India. I trust your wisdom so much so know how much you helped us in making this happen. Love to you and R.

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

C H A R L I E....

youtube.com/watch?v=SaR5NdV...

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 01/19/2021 6:02 PM EST

bluesnjazz profile image
bluesnjazz

Great news! So happy you were able to do this. Truthfully, my heart aches for those folks in the U.S. with serious diseases and the astronomical costs for treatment. I strongly suspect LU177 might have already been approved in the U.S. if not for it's complete absorption with COVID-19.

paige20180 profile image
paige20180 in reply to bluesnjazz

Agree

Nous profile image
Nous

hi paige20180 ... that is wonderful news ... very happy for you and your husband ! ... thank-you for sharing this :)

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