Looking for Lu177 (in all the wrong places?)

[SeattleDan]

I get nervous looking on the internet for LU177 treatment options abroad- so many places in the world, such a range of prices, claims of expertise, etc. Also I'm not even sure who will even consider mHSPC (hormone sensitive) candidates. Have any of you used Bookimed to make recommended arrangements, or have you made direct arrangements on your own? For instance, the 'medical tourism' bookimed site names a clinic in Madrid, Spain that appears to be far less expensive than most of the German sites- do you think their recommendations are legit?

[Tall_Allen]

How many metastases does one have to have before its benefit outweighs its toxicity?

[SeattleDan in reply to Tall_Allen]

Good question! I have 9 or 10 in lymph nodes up to my neck but based on what I've made of your research ("Why Lutetium177 PSMA treatment sometimes may not help..." -I think that was you writing it), I am trying to find out whether I have many non-avid cancer cells (heterogeneity). PSMA scan from last month says avidity is mostly of "moderately intense uptake". I can try to tell you more if it would be helpful. Thank you- it means a lot to me and so many others that you're on the ball for us.

[Tall_Allen in reply to SeattleDan]

Will you be getting an FDG PET too?

[SeattleDan]

I will try to get one asap if that’s what it takes to make an informed decision, sure. I didn’t know about that approach when I got the Pylarify PSMA scan last month

[Brysonal]

I haven’t used bookmed and choose Docrates in Finland due to holistic nature of specialty oncology hospital plus willingness to include Lu-177 in the treatment plan for someone who is hormone sensitive. I decided that outweighed cost for me.

[Brysonal]

Saw this tweet this morning;

Saw this on Twitter this morning

[NickJoy]

We also found Docrates very good

[noahware]

I think all the US trials probably require castrate resistance. Personally, I also would be nervous about going abroad. What I think I'd want is some kind of personal contact with a patient who has actually been to the clinic in question, which is something that might be facilitated for you through this forum. Good luck!

As for your "hit" title above,

I was lookin' for Lu in all the wrong places

Lookin' for Lu in too many internet-spaces

Searchin' their slides

Lookin' for traces of what I'm dreaming of

Hoping to find out what they've uncovered

I'll bless the day I too discover a treatment that works

Lookin' for Lu

[SeattleDan in reply to noahware]

Sing it, bro! We share a love for rhymin'

[j-o-h-n]

The guy with herpes of the eyes....."Looking for love in all the wrong places".....

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 02/20/2022 9:57 PM EST

[skateguy]

The FDA has allowed Johns Hopkins Hopital (Baltimore, MD) to treat people with LU177 prior to FDA approval. I was going to get treated there in December 2021, but my PSMA scan was negative. Good luck to you.

[SeattleDan in reply to skateguy]

Thank you- probably for castrate resistant only

[skateguy in reply to SeattleDan]

I’m castrate resistant, so you may be correct. It still may worth calling.

[poppymom0211]

Seattle Dan- my husband went to Wiesbaden, Germany to Prof. Dr Richard Baum who is quite well known. He had the PSMA scan there as well as the Lu 177 treatment. We had a personal recommendation for Dr Baum. If you are interested, I can send you his contact info. Best of luck!Poppy Mom

[SeattleDan in reply to poppymom0211]

Thank you and if he considers the castrate sensitive too then yes, I'm interested

[SeattleDan in reply to poppymom0211]

Apparently he does do castrate sensitive too, you yes, do please send contact info! Thank you so much!

[HopingForTheBest1]

Novartis makes LU177 and calls it LUTATHERA. Their patient website is lutathera.com . They have been ramping up production in advance of FDA approval coming in the next few months.

[SeattleDan in reply to HopingForTheBest1]

Helpful to know- thanks

[MateoBeach]

I would not personally go through an internet referral site. I would consider those that have the most experience and have published research on their experience. Outside the US they often treat HSPC and it may work better earlier, and especially with lymph node only disease. I would consider Germany, Australia and India. But not the latecomers jumping on the bandwagon.Go for it if you can afford it. Unless you can find a clinical trial that is treating HSPC open label. When FDA approval is given we might expect a significant shortage of the isotopes and price increases.

[SeattleDan in reply to MateoBeach]

Sounds wise to me, thanks.

[Scout4answers]

DanI have been thinking about this also, please post what you find and what you decide to do.TIA

[gyancey]

I had a very good experience with Dr. Richard Baum at Bad Berka Germany. He is now right outside Frankfurt. Much easier! I am hormone sensitive. The total cost was around 13,000 euros.

[SeattleDan in reply to gyancey]

Thank you- helpful. Do you mind telling me more about your situation? Did you just get one dose of LU177 and that did it for you, no more sign of mets? Are you now continuing on ADT?

[gyancey in reply to SeattleDan]

Diagnosed with metastatic prostate cancer June 2018. Gleason score of 9. Started on ADT right away. Bone scans were inconclusive so I had a PSMA scan at UCLA August of 2018. Had moderate tumor burden. Mainly pelvic lymph nodes and bone mets to spine and ribs. Doc at UCLA suggested traveling to Germany for LU-177. Found Dr. Baum who agreed to treat me even though I was castration sensitive. Had LU-177 treatments March and June of 2019. The treatment was effective as all but one pesky lymph node mets was resolved. I am currently on a ADT vacation with fingers crossed.

By the way my PSA never got above 5. I am one of the rare ones whose PSA levels did not reflect the tumor burden.

I hope that helps. Happy to share more details if you need them. I think I have Dr. Baum's new contact info if you need it.

Cheers!

[SeattleDan in reply to gyancey]

yes, please!

[ishitasen]

Hi SeattleDan

We at our clinic in New Delhi, India are providing the Lu-177 therapy for mHSPC also, and the results we get from our past experience are quite encouraging. Depending upon the results of ur PSMA scan u can get benefitted from the Lu therapy.

The cost of the entire procedure which includes ur stay, treatment, and PSMA scan is nearly half of the treatment cost of Germany.

For more information please connect with my team member Manav at [e-mail]