Lu177psma success stories : Hello... - Advanced Prostate...

Advanced Prostate Cancer

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Lu177psma success stories

Nirman
Nirman

Hello please share some lu177psma success stories to boost morale.

54 Replies

I had LU-177 and AC-225 at the University of Heidelberg. Went four times. PSA is <0.1.

Nirman
Nirman in reply to lewicki

Wow which clinic and what’s doctors name?

healthunlocked.com/advanced...

I had Lu 177 PSMA in 2016 at the Technical University of Munich. The cancer was castration sensitive and there were many lymph node metastases in the pelvis and abdomen. One Lu 177 PSMA made all the mets PSMA negative according to a PSMA PET/CT done 8 weeks later. I continue on ADT and anti androgens treatment. No evidence of PSMA avid mets based in 3 other PSMA PET/CT done during the last 5 years.

BruceSF
BruceSF in reply to tango65

Hi Tango,

It's great that you had a good response with just one treatment! How has your PSA been? Also, did you have radiation treatment to the primary, or did the LU-177 treat that as well?

tango65
tango65 in reply to BruceSF

The treatment to the primary was RP done in 2002. Then salvage radiation in 2005. The mets were discovered in 2016. PSA started to increase during these 5 years and anti androgens were started last year. PSA stable around 0.3 - 0.4.

Nirman
Nirman in reply to tango65

Great which clinic and what doctor?

5 rounds of Lu 177 PSMA at TUM in Munich and have had an undetectable PSA for 8 months so far! Mostly LN disease, mCRPC. No post treatment PSMA PET, which I would like to do, but nobody in the US wants to do it with an undetectable PSA.

tango65
tango65 in reply to TeleGuy

Great results. They recommend to do the PSMA PET/CT with a PSA around 0.5 at least, The detection rate is around 50%,

Nirman
Nirman in reply to TeleGuy

Great which clinic what doctor

TeleGuy
TeleGuy in reply to Nirman

TUM=Technical University of Munich, Klinikum Rechts der Isar. I had Dr. Eiber but they work as a team.

Nirman
Nirman in reply to TeleGuy

Okay thank you

Hello Nirman, My history of LU177 is almost ancient history now but it worked & gave me at least two years of a psa of 1.6. Now 2021 & psa is 8.6 & rising & no more treatments here in Australia.Last treatment was December 2018 so i finished too early at a psa of 1.6 & should have had a third treatment?

I might add my psa was 18 before the treatment & went down to 5 & then 1.6 after second treatment.

Conclusion is- IT works but is very expensive & should be made readily available.

Nirman
Nirman in reply to ARIES29

Thank you

Gentleman in Melbourne has had 9 infusions over the last few years. Has had Advanced Prostate Cancer for 20 years.

Nirman
Nirman in reply to NevsMates

Wow Can you tell me more about that

tjmm7f
tjmm7f in reply to Nirman

My dad has had prostate cancer for over 10 years, bone and brain mets that were surgically removed. Would Lu-177 work for him? Considering a trial for Actinium 2225 in New york too. Would love input.

pilot52
pilot52 in reply to tjmm7f

I assume you are talking about Tagawa? He is brilliant...

tjmm7f
tjmm7f in reply to pilot52

Yes! I have be looking at his studies for a while. He seems amazing!

GeorgeGlass
GeorgeGlass in reply to tjmm7f

where in New York? Is this similar to LU-177?

tjmm7f
tjmm7f in reply to GeorgeGlass

Weill Cornell. It is similar to LU-177

The gentleman in question was on the first Lutetium 177 trial of about 30 men at the Peter Mac Cancer Centre in Melbourne Australia.Peter Mac Hospital is one of the leaders in the world of this treatment.

Lutetium 177 gets rubbished in some circles.

Way too many men have had infusions that were not suitable for this treatment.

You need two different types of scans.

Gallium 68 PSMA PET CT Scan

FDG PET CT Scan

If metastases shows on the FDG scan that are not on Gallium 68 PSMA Scan, you are not suitable for Lutetium 177.

In Australia way too many members have paid $10,000.00 per infusion because the Gallium 68 PSMA Scan showed they were PSMA ( sorry can't think of the right word. Too many years of ADT)

If all of those men had the second scan FDG some would have not proceeded with treatment.

If you are having or considering have Lutetium make sure the treating hospital is a Hospial of Excellence in Theranostics.

Best wishes

Nirman
Nirman in reply to NevsMates

Yes the nuclear Medicine doctor I contacted, she suggested to do the same to get a FDG scan and that’s what we are about to do

Looks like you are getting the right advice if you are having the 2 different scans. FDG & Gallium 68 PSMA

May it all go well.

Nirman
Nirman in reply to NevsMates

Thank you we already have Ga68 Psma but fdg will make things more clearer

Hi Nev, I had FDG PET scan last July before having planned 5th dose Lu177 when Psa was about 30.it was negative so I went ahead with 5th and a 6th dose Lu177, but then follow up PsMa can showed many small new bone mets with low PsMa avidity so I could not have more Lu177.

Its not an an uncommon outcome to find that some small Pca bone mets are not killed by Lu177, but highly antagonized so they mutate to oppose what the docs have piped in to kill them, and they stop making PsMa so more Lu177 of AC225 just won't work.

The fickle behavior of Pca and its production of PsMa is the weak link that undermines the use of Lu177 and so although good progress might be seen after 4 doses, it just won't always continue, and Pca outwits the doctors yet again.

But now I am to get Ra223 which relies on calcium traffic, with no reliance on PsMa expression.

I was told in 2009 at diagnosis I had aggressive Pca cells, young man's type of Pca. Some men have non aggressive wussy - weak Pca and they get all the good luck, but I sure ain't one of them.

Patrick Turner.

Hi PatrickGood to hear from you.

Are you seeing Dr Louise Emmit (Not sure how you spell her last name) for Lutetium options.

Wishing you success in where ever the treatment directions take you.

Saw somewhere you are still able to ride the bike. Stay safe.

Best wishes

Nev

I have always been supervised by a Dr Macfarlane or Dr Lenzo at Theranostics Australia. After treating maybe 1,100 with Lu177 since they began business in Oz in 2015, there is not much they don't know about nuclear medicine for Pca. But in 2019, I had Dr Louise Emmett take care of me during my 3rd dose Lu177, and it was her who suggested I should have been on Xtandi to boost PsMa expression and make Lu177 more effective. She said clinical experience of many docs was to find Xtandi much lengthened the effectiveness of Lu177. The chemo I had in 2018 would have re-sensitized my Pca to slowed down or killed by Xtandi, and said typical Psa response Dr Emmett is doing a trial at St Vincents in Sydney to test the idea that Lu177 with Xtandi is better than Lu177 alone. Well, my Psa went from 25 to 0.32, one year after I began Lu177, real low as she predicted, even though I began Xtandi 2 weeks after 3rd Lu177 shot, so my 4th shot did a lot more than first 3. But as soon as Psa went to 0.32, it then began to rise and 8 months later it was back up to 30 in July 2020. Nobody said anything about what happens when Xtandi stops working and I continue taking it. I doubt anyone knows, and I am still taking it, but I think it had ZERO benefit for my 5th and 6th Lu177 shot last year. Psa went from 30 to 7, and is now about 100. I was given Veyonda also for 5th + 6th Lu177, and I have no idea if that boosted PsMa as it was supposed to do.

Well all have different forms of Pca. Mine is the fierce dangerous Mongrel Dog which

is trying to mutate to avoid killing effects of any more Lu177. OK, but the dog has not figured out what to do when I poison it with Ra223, and with Ra223, there's no reliance on PsMa expression, and this is this is the WEAK LINK for Lu177 or Ac225 treatment.

I cycled 218km this last week, typical distance for last 10years.

Today I did 76.1km, and first 26.3km across town to have a pot of green tea took 59minutes at average speed 26.6kph, with zero wind assistance or hindrance, so a real good time for me for last 10 years.

The rest of the ride involved more hills and riding to avoid town centers, so I ended up with 24.1kph average for 76km, and only one young smart arse about 24 overtook me on a hill.

I am cycling very well without any symptoms of Pca in my bones. I did have a few when I first began Lu177, but they faded, and then some last year, and they also faded, but if I was not involved with zealous nuclear doctors, I would not know I had Pca, or that it would kill me quite soon if I waited for bad "skeletal events" to happen. I don't dither about hoping things will get better while Psa doubles each darn month. A man MUST act, to arrange for best way to attack Pca BEFORE it crumbles his bones.

It is possible my cycling has some therapeutic effect on Pca, but it that were true, I'd have to ride a bike furiously for 24 hours a day to maximize the effect, and I may well still need all the treatment I am getting. Well, I ain't very good at eating and sleeping while on the bike.........

I have to be careful about what I do on bike while having Ra223, I just don't know if the large increase in blood circulation per hour might dilute effect of Ra223, while it may be true that not cycling for 2 weeks after a dose won't speed up my body's attempt to get rid of this horrid stuff that is just not meant to be there. But then my blood is only much hastened around my vascular system for 10hrs a week, and there are 168 hours in a week. So what difference would it make to cycle? Side effects are supposed to be vomiting and diarea, and I don't fancy trying to cycle if I have to stop to vomit, or find a toilet, if I could. Things might get real messy.

I'll just have to wait and see.

But I did enjoy every second of this morning's cycle ride.

Patrick Turner.

I can highly recommend Prof. Dr. Richard Baum in Wiesbaden, Germany. He has his own dedicated wing at the DKD Helios Clinic there. Very well organized and run. He is both an M.D. and a Professor of Nuclear Medicine. He has been doing it for many years and I found this location to be less expensive than others in Germany. psmainfo.org/

Nirman
Nirman in reply to Jasmann

Okay thank you

See my details.Altogether 6 lots of PSMA Lu177, In Australia and New Zealand. 4x sessions when oligometastatic in 2017, didnt get it all but zpped most, probably stopped progression by 1-2 years.

2 sessions PSMA Lu177 last year to extensive mets in pelvis and spine. Less helpful.

Suggestions; You need FDG and PSMA PEt scans. Most impportant: treat early. Expensive.

Nirman
Nirman in reply to immunity1

Okay thank you

See one of the pages at my website where I tell all details about all Pca treatments since 2009 including Lu177 :-

turneraudio.com.au/Patrick-...

6 doses of Lu177 seems to have got rid of all visceral mets and many bone mets but new small bone mets have sprung up like mushrooms which do not express much PsMa so more Lu177 would be a waste of time + dough.

So I am starting Ra223, Xofigo, next Friday, which is said to be very effective with small mets in bones. But I don't know what the definition of small or large is, and because I have no symptoms of Pca in my bones, I might assume all bone mets are small, so its just the right time to give them all a darn good dose of Ra223 over next 6 months or longer.

I have no idea if I will be alive in 2 years. Psa is probably about 100 now.

I live in Australia, and deal with Theranostics Australia. They are good medical professionals, and I can't whinge about the costs.

But I can look forward to a very nice bike ride tomorrow morning early before the day gets hot, because 28C is forecast. Its Sunday, and hardly much traffic, and at 7:30am its the best time to enjoy a good fast ride.

Patrick Turner.

Well I am sure you gonna live many more years and more then two Thank you for inspiring keep riding good luck

Hey dude have you looked into the vaccine ? Contact Dr. Sen just for kicks and she will direct you to the proper site...Some of the guys who came to a dead end have found great success going down that road...I am not there yet so have not looked into it...Blue Skies...

Nirman
Nirman in reply to pilot52

Can you please tell me more about vaccine I mean what vaccine and is it available in India? Because perhaps neither provenge vaccine nor xofigo treatment currently available in India

What's the link to Dr Sen?Anyway, Ra223 action is not dependent on PsMa expression, but only on calcium traffic in bones.

I'll check that site out if I get a link.

Patrick Turner.

dr.ishitasen@nuclearmedicinetherapy.in, give her a shout out she is very responsive. I have had brilliant people and some not so brilliant. I have been to MD Anderson, and Duke Cancer. both tops. I understand the ability to be involved while understanding my limitations . ( Such as ..I have never asked for a time line because no one knows. ) We as patients have responsibility as well. Good Luck . Dr. Sen knows her stuff leaves her ego at the door and will get you to the proper vaccine people or make suggestions . Blue Skies

Thanks for the link to Dr Ishita Sen in India.I'll tell the Indians of my position and experience by just giving them a link which they would understand in minutes, rather than spending hours on emails. I won't ever be their customer, so I don't feel I have a right to waste their time, but they may be idealistic enough to take a look at what has happened to me over last 11 years.

Dr Sen may have a little good advice to at least consider.

Patrick Turner.

Ok, I saw Dr. Ishita Sen at Fortis health care India...as well as a good friend of mine. He can fill you in on his story. I had very avid PSMA uptake and multiple bone mets appeared on scapula, spine , pelvis, and right arm. I was classified as having a high tumor load. I underwent 3 rounds of Lu-177 under a new protocol. I am chemo naive. The largest lesion on my scapula was barely visible before my third infusion. PSA is currently 0.42 and still dropping. Dr. Sen will respond to you immediately . Her admin is sharp( Manav). I traveled business class United Airlines, stayed at the Westin Hotel, had transportation by a 2020 BMW with the same driver, met at the airport by a concierge service and had included all medical services 40,000.00. This can be cheaper if you cut some corners on travel and get a standard room at the Westin..I have not reached nadir yet so we shall see. I was slipping fast with the high tumor load now I am back to getting in the cockpit and flying Angel Flights soon...Blue Skies and always a Tailwind, Sky King and Penny (woof) I do not know where any of you are but there are clinical trials this year popping up for chemo naive patients. I could not wait. OH ..............side effects??? I had avid uptake in the salivary glands and got grade 1 dry mouth...this lasted about 4 weeks with me then it slowly abates. Slight fatigue but all in all very very doable....never shut me down always up early and down early but that has always been my trend ........good luck to all.

Nirman
Nirman in reply to pilot52

That’s what I needed thank you very much

6357axbz
6357axbz in reply to pilot52

Happy to hear your good report pilot. Thank-you for all the helpful information you’ve provided on your travel and treatment! How many separate trips did you take to India over your 3 infusion treatment plan?

Nirman,

The best I can do as part of the Vision Trial I had 6 LU177 infusions. My starting PSA was 110 doubling every 3 weeks. At the end of the trial my PSA was 0.44 so I had a great response. My PSA did start climbing again after 3-4 months but doubling time went to 6 weeks. Currently doing Jevtana but it’s been two years since LU 177 and I’m still here and doing well.

Nirman
Nirman in reply to Jackpine

Ohh that’s amazing God bless you I count you in one the most inspiring person I came across

Do people stop doing Lu177 because of the cost or because cancer stops responding to it? Just curious.

Participated in the Vision Trial with 6 doses of Lu-177 6 weeks apart February-October 2019. PSA went from 68.5 to .89. Under the close supervision of my very knowledgeable doctor (don't try this on your own) I tried BAT for about 4 months. Didn't change the rate of rise in the PSA but we hoped it might resensitize to Xtandi. (gave me the opportunity to gain back a lot of muscle mass for a while). Reintroduced Xtandi with no success. Went to UCLA for PSMA Ga68 Pet/CT in December 2020 with PSA of 114.0. Decided to travel to Vienna, Austria for 3 rounds of Lu-177 at Minute Medical Clinic, Dr Markus Hartenbach. After first treatment in January PSA dropped to 40 and bone pain in hip was gone. Second treatment was February 12th so too soon to know how much effect it was. Third treatment scheduled for March 16th. Dr Hartenbach has at least 7 years of experience with Lu-177 (mostly in Germany I think) and many more with the treatment of prostate cancer. Very expensive.

Nirman
Nirman in reply to cwu1974

Thank you for information I wish you Good luck

GeorgeGlass
GeorgeGlass in reply to cwu1974

have any studies shown that LU-177 extends lifespan? Why hasn't the FDA approved this treatment? Are they reviewing it?

MyDad76
MyDad76 in reply to cwu1974

cwu1974: can I ask what as the cost of one LU-177 treatment? Thank you!

cwu1974
cwu1974 in reply to MyDad76

The first treatment of the 3 treatment protocol is 30,000 Euros, second and third 20,000 Euros.

Bangkok
Bangkok in reply to cwu1974

The pet scan in Thailand is $3500 CAD and the Lute 177 treatments are $17000 CAD each.

MyDad76
MyDad76 in reply to cwu1974

Thank you. Austria is very close for us (coming from Slovenia, the neighbor country with unfortunately totally different (outdated / communist) health system).

The Vision trial started just a little over two years ago and most of the men in the trial who received Lu-177 finished their 6 treatments more than a year ago. However, Novartis is still doing the follow up with the men in the trial to come up with all the statistics about the effectiveness, time before progression, etc. I'm quite certain the FDA will approve it when all the information is in. There were other trials last year that were also going to use Lu-177 but I suspect most were postponed due to covid. Novartis is starting another trial in March for men in early stage prostate cancer. I'm sure it could be found at clinicaltrials.gov.

My first PSMA Pet scan last year showed I was lit up like a Christmas tree with mets galore. My Canadian oncologist even showed my spinal X-rays to a surgeon to see if I needed structural surgery. I just had another Pet scan a year later and my spine has completely regenerated after three rounds. I can Mountain Bike again without fear. I have my Lute -177 in Bangkok for a couple reasons. World class hospital and less than 1,000 cases of Covid in a country of 69million. Also, the temperature is constant around 30 degrees C all year round. Not so in either case for Germany.

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