Lutetium -177 treatment: Hello I just... - Advanced Prostate...

Advanced Prostate Cancer

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Lutetium -177 treatment

DonM253 profile image
37 Replies

Hello I just had my Pet PSMA. It showed I had lymph node involvement in my pelvic region. I’m clear everywhere else per bone and other scans. I’m just learning from my oncologist about the referenced treatment but I guess it’s not available in the states. Has anyone received this treatment abroad? If so, how was your experience, results and cost? I see Germany, Israel and India offer this treatment. Thank you.

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DonM253 profile image
DonM253
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37 Replies
6357axbz profile image
6357axbz

There has been a huge amount of posts here on this subject. Suggest you use the search routine using “lu 177” for starters

RyderLake2 profile image
RyderLake2

So also do Australia, Great Britain and a host of other countries.

db1966 profile image
db1966 in reply toRyderLake2

Are you sure about Great Britain? My fellow warriors in the Uk are telling me it’s not available.

Mick268 profile image
Mick268 in reply todb1966

The Royal Marsden are doing it but not on the NHS, it’s about £8400 per session plus scans.

db1966 profile image
db1966 in reply toMick268

That’s cheaper than Germany.

NickJoy profile image
NickJoy in reply todb1966

Hi - it is available in a few clinics in UK but only privately so many people aren't aware that it is available - I think there may be a requirement for prior treatment with chemo but I'm not sure.

tango65 profile image
tango65

I wonder if you could do a summary of your clinical condition.

If you do not have distant metastases and your cancer is N1 M0, I would consider whole pelvis radiation and 2 years ADT plus abiraterone. If you had a prostatectomy the radiation should also include the prostate fossa.

If your cancer is hormone sensitive there is a clinical trial at the Sloan Kettering cancer center combining radiation and Lu 177 PSMA:

clinicaltrials.gov/ct2/show...

I had Lu 177 PSMA treatment in 2016 at the Technical University In Munich. One treatment was enough to make all the lymph nodes PSMA negative. I did not have any significant side effects. I had some fatigue for 12 hours and some edema because of the amount of liquids they gave me. No problem with the salivary glands. The cost is around 12 to 15 K euros.

DonM253 profile image
DonM253 in reply totango65

Hi Tango, I've been reading your thread about your treatment 3 years ago. Great info. Here is my clinical info.

-Proton Radiation 2009 at LLUMC

-Salvage Prostatectomy at NIH in 2011

-Lymphotomy Dissection 2014 at UW Medicine in Seattle

Note: Dr. Snuffy Myers was my oncologist for 3 years. He had me on different meds throughout the years to manage my PSA/cancer. He has since retired and unfortunately I haven't been able to replace him with a doctor who thinks out of the box, per se)

-Zytiga w/Firmagon for several months

-Xtandi for for several years until recently.

-Eligaard started a month ago. PSA dropped from .75 to .13 in a month.

-PET PSMA w/Plarify scan- Shows as I described in my initial posting

-Bone, MRI, CT scan within this past year. All came back negative.

-My current medication as mention is Eligaard and Xtandi.

GaryG1950 profile image
GaryG1950 in reply toDonM253

If you were working with Snuffy Meters you may want to consider Dr Luke Nordquist as an alternative. He runs the Urology Cancer Center in Omaha, NE and is heavily involverd with all current research developments with PC. They offer Lu 177 trials along with a number of other new trials you may be interested in. Also has advanced imaging testing on site. Definitely an "out of the box" thinker, great clinic. Pts come from 35 different staes in the US plus a number of other countries. gucancer.com

tango65 profile image
tango65

Why the change to Xtandi from zytiga? Did they ever documented distant metastases?

DonM253 profile image
DonM253

Sorry. Zytiga was a pass drug I used that didn’t work after about a year. I’m currently still on xtandi which worked for about 6 years. Now in the past month my oncologist added eligaard with xtandi. He added eligaard due to my PSA started to rise. Since my initial inject my PSA dropped from .75 to .13 in less than a month. I do not have distant metastasis. I have lymph node involving in my pelvic region by my iliac area and one tumor my prostate per my PET PSMA w/plarify scan recently.

tango65 profile image
tango65 in reply toDonM253

I would seriously consider Lu 177 PSMA treatment. There are several clinical trials:

clinicaltrials.gov/ct2/resu...

DonM253 profile image
DonM253 in reply totango65

Thank you. I’m meeting with my oncologist later today to discuss this LU 177 treatment.

DonM253 profile image
DonM253 in reply totango65

Do you happen to know the difference between LU-177-617 vs LU 177 PNT 2002? I see both listed in the clinical trials. Thank you.

tango65 profile image
tango65 in reply toDonM253

They are different ligands but I do not know if one is better than the other. I do not think there are studies comparing one with the other.

JamesAtlanta profile image
JamesAtlanta

I’m pretty sure MD Anderson is running a clinical trial on LU177. You may want to contact them.

Good luck!

James

DonM253 profile image
DonM253 in reply toJamesAtlanta

Thank you

pilot52 profile image
pilot52

Try Weill Cornell, MD Anderson, UT Southwestern, or you may contact me on private messaging. I went to India with a heavy tumor load and had great results. Seem Dr. Ishita Sen was using a new protocol that is now actually showing really solid evidence of treatment standard for the future. Also had a close friend I developed on my journey who headed over there a week ahead of me. We finished up together. He was told at Hopkins that nothing really could be done for him....He is PSA 00.00 for over a year now and back as a Captain in the airlines...I had one doctor at Anderson who was a little sketchy but the rest were spot on. Blue Skies , Sky King and Penny (woof) Oh am I flying again ???? Yuppers!!!!!

bean1008 profile image
bean1008 in reply topilot52

Congrats, pilot! I retired last year after 40 years as a FA to fight this bastard. Glad to hear you’re back in the air!

DonM253 profile image
DonM253

Thank you for this info.

Survivor1965 profile image
Survivor1965

Isn’t Lu-177 headed for FDA approval very soon in the US? Like early this year?

Spyder54 profile image
Spyder54 in reply toSurvivor1965

Kwon of Mayo is thinking 1Q here in US according to his recent youtube video.

Survivor1965 profile image
Survivor1965 in reply toSpyder54

Thank you, missed that. I saw him for 4 years in Rochester. Incredible guy.

acuphealing profile image
acuphealing

Thanks for your post Don! Nice to see you are looking at LU-177! My husband is also going down that path.. question all- is it true that LU-177 only extends life about 5mos - heard someone else report that?! Can’t locate definitive statement of longevity from LU-177.

NOCanceros profile image
NOCanceros

Hiyes there is a good place in Germany heidelsberg university hospital,i never did it because i do not need it now.Yes it cost.

Cathrin Hollenbach

Team Secretary | Inquiry Management | International Office

Heidelberg University Hospital | Im Neuenheimer Feld 400 | 69120 Heidelberg

Tel. +49 6221 56-6243 | Fax. +49 6221 56-33955 | E-Mail: international.office@med.uni-heidelberg.de

klinikum.uni-heidelberg.de

Good Luck

BruceSF profile image
BruceSF

Hi Don,

It’s interesting that you were able to get someone to give you Xtandi without ADT! Also it’s great that it has worked for 6 years. I hope the Eligard will keep it under control for a few more.

Here are a couple of links to some posts about Lu-177 in India. The cost per infusion there is around $6,000, and accommodations are reasonably priced.

The doctor providing Lu-177 (Lutetium) treatment in India is: dr.ishitasen@nuclearmedicinetherapy.in

You can e-mail Dr. Sen directly, she will answer you along with her admin. She's at Fortis Hospital in Delhi. They also arrange visas and transport from the airport.

here is a fairly full report from India:

healthunlocked.com/advanced...

They have good information about what hotel to stay in and their experiences with the treatment there.

this is another recent post on the forum from India:

healthunlocked.com/advanced...

I recently watched a talk by Dr Nat Lenzo from Australia who says they have very good results with lutetium for nodal invasion. PM me if you’d like his email address.

Bruce

joeguy profile image
joeguy

I was hoping to get into the PSMAfore 177-LU trial in the US, but I was told yesterday the trials are on hold because they cant get any of the 177-LU drug. Frigging supply chain problems are affecting everything

in reply tojoeguy

groan. so much effort on Covid. and everything else suffers. I'm beginning to wonder if these stay at home efforts were the right thing.

MateoBeach profile image
MateoBeach

I was in essentially the same situation as you in 2019. Post RP in 2007 GL 4+3, had Early docetaxel and salvage RT to prostate bed for SVI and ECE.BCR 2 yrs later but controlled with bicalutamide until 2019. PSA rising 0.28.

Investigated Lu-PSMA and even consulted with GenesisCare in Australia.

Got my Ga-PSMA scan and it showed only two LNs light up in my pelvis. Nothing anywhere else. Three consulting ROs, including the Lutetium PSMA specialist all reviewed my scans, and all three strongly recommended IMRT to my pelvic fields with boost dosage to the identified nodes. With short term ADT since my PSA was so low, only six months. That is the only approach that offers the possibility of a cure. Keeping the Lu177-PSMA treatments in reserve should something else show up. So far so good.

I think you should explore this with an experienced RO at a good institution now. Good luck.

DonM253 profile image
DonM253 in reply toMateoBeach

I apologize but what’s the acronym for RO?

CAMPSOUPS profile image
CAMPSOUPS in reply toDonM253

Radiation Oncologist.

MateoBeach profile image
MateoBeach in reply toDonM253

Sorry: Radiation Oncologist (as MO is for Medical Oncologist).

DonM253 profile image
DonM253

That’s a good strategy…..Waiting for LU 177. I was gonna ask my oncologist about this as well. I do have a meeting later this month with radiology at Seattle cancer care. However, I’m just trying to figure this out. I had a great run with xtandi for 6-7 years. I’m 55 now trying to get to 70 👍🏻😀

MateoBeach profile image
MateoBeach in reply toDonM253

SCCA in Seattle is one of the best 👍

pachydermsun profile image
pachydermsun

BruceSF's response above gives a thorough summary regarding LU-177 treatments in India. My husband had three treatments from Dr Ishita Sen over a period of months in 2021. The doctor and her team are delightful, competent professionals who are easily accessed by email. Dr Sen answered all questions emailed to her within 12 hours. Manav Sadhwani, Head of Patient Facilitation, seamlessly managed trip and treatment connections. Fortis Memorial Research Institute where treatments are given is 15 minutes from The Westin Gurgaon, a hotel with lovely rooms, delicious food and competent drivers. Both United Airlines and India Air fly non-stop from San Francisco, of particular interest West Coast patients. Due to duration of flights to/fro India, it's important to travel either first or business class, which allows access to airline clubs at airports. The bed-seats make nice nests. -pachydermsun-

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

Greetings Don,

Please tell us your bio. Age? Location? When diagnosed? Treatment(s)? Treatment center(s)? Scores Psa/Gleason? Medications? Doctor's name(s)?

All info is voluntary, but it helps us help you and helps us too. When you respond, copy and paste it in your home page for your use and for other members’ reference.

THANK YOU AND KEEP POSTING!!!

(Chonia Pola Gianni)

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 01/07/2022 6:37 PM EST - Greek Orthodox name day for JOHN.

TJGuy profile image
TJGuy

Donm253

Two US locations are performing trials combining LU-177 with Veyonda (Veyonda developed in Australia with trials there as well).

Veyonda is thought to make LU-177 treatment much more effective.

MD Anderson in Houston and Beverly Hills Hospital in California picked for trials.

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