Quest for LU 177 therapy Continues... - Advanced Prostate...

Advanced Prostate Cancer

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Quest for LU 177 therapy Continues...

Cleodman profile image
21 Replies

Some interesting developments today in my quest for PSMA ligand imaging and therapy.

I had contact with UCSF today and as luck/prayer/God/the universe would have it, there was a last minute cancellation for the Gallium-68 PSMA PET CT earlier this week. I will be flying to San Francisco to have the imaging performed on December 17 and am very happy about this. It will help a lot with planning treatment location options. Most importantly it will finally let me know if I am suitable for LU 177. Secondly I will not need to wait for the 3-4 day washout period between diagnostics (getting the scan) and therapeutics (getting the LU 177) if traveling to another country.

Those of you from North America that have already obtained this treatment (abroad and not by clinical trial here in the USA or Canada) whether finished or on cycle # whatever...bravo! It sure takes a lot of work. Living in a WHO listed high risk COVID-19 country makes it even harder with all the tough quarantine restrictions put on us. One consistent observation that I have found is the compassionate out of country care fees are now significantly higher that what most of you have quoted on Health Unlocked threads. I am compiling a list of up to date costs, "typical" radiation doses, pro/cons ( personal opinion only), etc in hopes that it will ease some of the work for others seeking this as a possible (palliative/not curative) therapy. It's another way to slow progression and improve your symptoms. Balance that with the escalating costs and travel needs/restrictions.

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Cleodman
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21 Replies
tango65 profile image
tango65

I wish you the best of luck on the journey.!!

KSK54 profile image
KSK54

Good luck Cleodman.

Yadifan profile image
Yadifan

Wishing you the best of luck! You've been through so much - I'm glad something opened up for you. Safe travels!

Tall_Allen profile image
Tall_Allen

Is that Rahul Aggarwal's trial? I've met him and think he is excellent.

Cleodman profile image
Cleodman in reply to Tall_Allen

Yes it is. They are using a modified LU 177 which also binds well to albumin to increase the half life. Only 3 patients at a time though and I would not get treated until mid Feb 2021 at the earliest so I thought I would opt out and actually get treated with current recommended doses and not explore the phase 1 escalation doses.

Pierreb profile image
Pierreb

I am so happy to hear this wonderful news!!! I feel like this could be the start of good things to come!!

ron_bucher profile image
ron_bucher

Is Axumin PET/CT insufficient imaging for that therapy? My understanding (from my oncologist) is that in a fairly significant percentage of men, Axumin PET/CT might find tumors that PSMA misses because PSMA is not expressed in many men.

Cleodman profile image
Cleodman in reply to ron_bucher

The F18 (Axumin) PSMA PET CT seems to be superior due to its longer half life from my understanding but for now the gold standard world wide is still the G68. Likely things will change. You can attach the ligand to whatever you want really so new radionuclide therapies like AC225 and TH227 which target h2K and not PSMA and emit alpha radiation and not beta radiation but there is less world wide experience with them.

I think if you are in a position that you don’t know your staging or your PSA is low and/or tumor burden low the F18 PET CT would be the better option but my disease is everywhere so I am just looking for high PSMA avidity with the mindset that I will follow with LU 177 therapy. Hope this makes sense.

TeleGuy profile image
TeleGuy in reply to ron_bucher

You need to do a PSMA PET/CT to determine whether the cancer will uptake the 177Lu-PSMA that you ultimately want to treat the cancer with. An Axumin PET/CT will show whether the cancer takes up 18F-fluciclovine, but that doesn't tell you specifically whether it is will take up a PSMA radioligand. No sense spending the money on the 177Lu-PSMA therapy if your cancer isn't going to soak it up!

For scans, you can use PSMA ligands labeled with Gallium 68 or Fluorine 18, where 68Ga-PSMA is the most common today. 18F-PSMA will probably become more common over time as Fluorine 18 is easier to come by and its longer half life gives more time to transport it. The radioisotope's decay reveals where the radioligand was taken up in your body.

For therapy, the most common is to label the PSMA ligand with Lutetium 177 (177Lu-PSMA), followed by Actinium 225 (225Ac-PSMA) with Thorium 227 (227Th-PSMA) in evaluation. Note that the radioisotopes (18F, 68Ga, 177Lu, 225Ac, 227Th) don't target anything on their own, they need to be tied to a PSMA ligand to take them to PSMA-expressing cells to reveal where they are or destroy them.

treedown profile image
treedown

Can I ask your original Gleason score I don't see it on your profile.

Cleodman profile image
Cleodman in reply to treedown

Gleason 9

treedown profile image
treedown in reply to Cleodman

Thanks. Hope you find an option that works for you. I look forward to hearing good responses to future treatments.

CSHobie profile image
CSHobie

I wish you great success with your treatments.

Best wishes

Vasanta profile image
Vasanta

Our prayers with you , please update, i am also looking for Lu177.

my Father had the first Chemo, the second chemo was postponed due to low platelets

Concerned-wife profile image
Concerned-wife

Thanks for sharing this positive news and your generosity in offering to summarize your experience and knowledge from your overseas research

Fanger1 profile image
Fanger1

Super duper that you got into UC for your scan! I flew to England a year ago to get mine at Theranostucs UK Windsor. They do the Lu-177 RL therapy as well. Best wishes for PSMA avid cell type and blasting them away for good🚀🙏

Cleodman profile image
Cleodman in reply to Fanger1

Fanger1 that is where I am leaning towards to get treatment in January. Conveniently located close to Heathrow, quarantine is no so strict and flights are not super long. How was your experience? Was Dr. Du you provider?

Fanger1 profile image
Fanger1 in reply to Cleodman

Everyone at Genesis Care was very accomodating. Dr. Yong Du was excellent. I flew into Heathrow and got a cab to the facility. The hotel, Holiday Inn Express, is right next to the clinic. I enjoyed Windsor during my brief stay. From the hotel you can walk to restaurants and the Castle. Knock Em Dead👍

Here's the contact info:

Kim Bourne

Patient Administration Officer

Medical Secretary to Dr Yong Du - Theranostics

T: +44 1753 418 444

F: +44 1753 864 036

M: +44 7780 497 143

Kimberley.Bourne@genesiscare.co.uk

genesiscare.com

69 Alma Road

Windsor

Berkshire

SL4 3HD

timotur profile image
timotur

Great news CM. I had the PSMA scan in Feb 2019 at UCLA. Hope it goes well.

Just FYI: the CA Governor just placed a stay-at-home order until Dec 22, and not sure if this impacts you or not. Hopefully your visit is "essential" and quarantine is not required.

"Non-Essential Travel Lodging

Except as otherwise required by law, no hotel or lodging entity in California shall accept or honor out of state reservations for non-essential travel, unless the reservation is for at least the minimum time period required for quarantine and the persons identified in the reservation will quarantine in the hotel or lodging entity until after that time period has expired."

gov.ca.gov/2020/12/03/calif...

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

May you survive.... San Francisco..... and be succesful at USCF.... God be with you....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 12/11/2020 5:05 PM EST

MateoBeach profile image
MateoBeach

Thanks for the update and good luck! I look forward to your very kind offer to summarize recent prices, pros & cons of various sites, etc. Valuable for many of us!

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