Lutetium 177 PSMA treatment in Windsor, England

[blueCello]

Has anybody been treated in this GenesisCare clinic? We would be so happy to hear your impressions about their staff, clinic and treatment. I am particularly curious about what happens when you leave the clinic the same day, in Germany my husband was behind a lead door for three days. How does he not radiate everyone within a meter of him? There were bathroom protocols for the safety of the staff and it was suggested that clothing was thrown away too.

[16starsky]

If you find a website, prostratecanceruk.org I know there are at least a couple of men on there that have been to the Windsor clinic, near London.

Im sure that they will answer you if you ask

Kim (UK)

[GP24]

In Germany the law is that you have to stay on your room for two days after the Lu177 infusion. So your wife cannot see you during that time. The water and stuff from the bathroom is collected in special tanks for months until this does not radiate any more. So they ask you to limit the water you use. The staff will keep distance to the patient because otherwise they will get radiated from many patients all the time. They also do not want patients to meet in the aisle, discussing the facts of life and thus radiate each other. They check your clothes before you leave the hospital if a drop of urine made them radiate. Sometimes this happens to the watch bracelet too. Since they do not want to keep the underwear of various patients for months and then send them to the patient after that, they prefer that radiating clothes are disposed.

[DavidDundas in reply to GP24]

Lutetium 177 has a half life of 6.7 days, so any waste from you is unlikely to have to be retained for a long time.

[GP24 in reply to DavidDundas]

This is the law for nuclear departments in the clinic, independent of the substance they use for the particular treatment.

[Hidden]

I have had treatment at Windsor. Have a look at my posts for details. Any questions please ask.

[Gonda in reply to Hidden]

I read your posts. They are extremely helpful. We are coming to Windsor for my husband’s lutetium treatment next week from Colorado. I’m looking into whether my husband could get his second dose in Australia as it appears it could save us quite a bit of money. Thank you for sharing your experience.

[Hidden in reply to Gonda]

You’re most welcome. Glad it helped and good luck.

[blueCello]

Dear David,

Very sorry to read that Lu177 has stopped working for you. It sounds like you've really fought valiantly for 16 years! That alone is amazing. Wishing you a very happy new year despite all the challenges you are currently facing. You never know, they might yet come up with something to battle this disgusting dangerous disease.

[Hidden in reply to blueCello]

Thanks very much Cello. Same to you and yours. Something will come up.

[DavidDundas in reply to Hidden]

The potential new treatment to kill metastasic prostate cancer is CAR-T where your beta T-cells are havested and using gene editing they are attached to the PSMA, cultured back in a lab to increase their numbers and injected back into the patient Now the T-cells know what to go off and kill. This technology is already used for certain forms of leukemia, but is not ready for prostate cancer as the CAR-T provokes an over production of cytokines that cause inflation

[MateoBeach]

I'm planning to go to Sydney within the next 2 months for my first 177 LU treatment from GenesisCare. Very positive impression of their program, docs and experience. All arranged via Skype conferences after sending my PSMA scan, history, pathology and labs.

They do not require the hospitalization and strict isolation as they do in Germany. By their calculations that is not necessary. Just self monitored isolation in your own hotel room for a few days with room service for meals. Much more pleasant and less expensive. You are safe to fly after 3 days.

The same group from Australia manage their program in England. They do say that the cost is nearly double that in Australia though due to high isotope costs and expenses of operation.

[blueCello in reply to MateoBeach]

Hi Mateo,

Can you help me by telling me what you may pay in US dollars for the treatment in Sydney. Thanks! and happy new year.

[MateoBeach in reply to blueCello]

$500 US for the evaluation and Skype consults. This is applied to the treatment cost if you proceed. Lu-PSMA treatment is $8,000 per treatment cycle. A repeat Ga-PSMA scan is optional for following results and costs $800 US, approximately.

[blueCello in reply to MateoBeach]

Thank you so much! Where are you Mateo Beach? We are in Los angeles and when we try to click on the Genesis Care in Sydney it throws us out because we are not in England, Australia or Spain. We would prefer not to go to west australia since it is all so very far away. Do you have contact information? I have been unsuccessful looking about the internet.

[MateoBeach in reply to blueCello]

HI blueCello. I live in Bend, Oregon. Yes GenesisCare which is also Theranostics AU has clinics in Freemantle and Perth as well as in Sydney, which is much easier travel from the US West Coast. Their doctors are Dr. Nat Lenzo or Dr David Macfarlane.

Contact them at [e-mail]. Their patient services coordinator is Genevieve Shaw, [e-mail]. In Sydney their clinic is located in the Waratah Private Hospital Sidney NSW Dora St at Queens Road Hurstville NSW. Though their main business offices are in Freemantle: GenesisCare - Theranostics Richmond Quarter Building

Unit 106/1 Silas Street

East Freemantle WA 6158 AU

Email them and they will provide what they require to get you going. (A letter of referral, a case history summary. Copies of pathology and most recent labs.

I got a Ga-PSMA scan at UCLA and sent them a copy of the disc with the data.

This allowed Dr. Nat Lenzo to discuss the options and suitability with me. We agreed it would be best to do stereotactic body RT to two PSMA positive nodes and then follow it with Lu-PSMA for any remaining micro-metastases.

Very nice to have the Skype consults one-on-one for all my questions.

They are very nice to work with and I have high trust in their professional integrity.

[AlanLawrenson]

One critical issue with Lu-177 is that it is NOT a cure. It puts you in a holding pattern. It is of the most importance to monitor your PSA at least every month and consider other therapies such as Xtandi should the PSA start rising. Failure to do so might leave you in the position that my brother is in, and that is critical ill with leg paralysis due to spinal compression. He had booked to go on a North American holiday for 5 weeks. He had pelvic bed pain before he left (he and his dr did not associate this with PCa), but his PSA a few weeks previous to departure was 1. Less than 8 weeks later his PSA was 100, then ten days later 315, then 740, when Xtandi was resumed. PSA down to 500 (very bad fatigue) when he was taken off it when they considered his position as terminal. PCa in bone marrow, etc. Remarkably, over past few days he has rallied and hopefully, will start new experimental drug regime next week.

So the message is DO NOT take your eye off the ball. His USA/CND trip might have fully compromised his position. He was treated by TA in Sydney.

It might be useful looking for groups that use the ligand peptide J591 rather than the more common J617, as the former appears to offer better OS. See my new 3rd edition book ex Amazon. (eBook version available later this week in USA).

[blueCello]

Fascinating; never heard of these last two J's. Cheers to all; happy new year! let it be more joyful than sorrowful.

[immunity1]

Belated reply. I have had 4 sessions of Lu177 at Genesiscare in Australia in 2017. I imagine Windsor will be similar with a Royal overlay. Comments as per Mateobeach above; professional, personalised, practical (especially around personal monitoring of body radioactivity without going overboard as the Germans' do). Expensive. Lenzo and MacFarlane are good and easy communicators - you will soon pick up on the Aussie idiom. If you want more detail contact me personally. =Rob.

[blueCello]

Dear immunity1,

Thank you so much for your reply! I guess for us there isn't much difference in going to England or Australia from Los Angeles. The treatment is much cheaper according to Mateo in Oz so we may hope to get in there for treatment. It's all been tough over the holidays; getting cancelled due to "capacity problems" in Germany and then everybody gone for weeks. Hopefully, this will be the week we can calm down and see his third treatment date is going to happen.

Best to all of you, I really appreciate everyone who reads and responds so kindly.

[Hidden in reply to blueCello]

I’ve just heard from Windsor that they are having a two week shut down at the end of January/beginning of February -so you might want to plan around that for any follow up treatment. Scans etc.

[blueCello]

Oh my, it seems every time we make a plan something pulls the rug out from under us. Thank you for the information!

[DavidDundas]

I have had a Gallium68 PET scan at Geneseis Care in Windsor to locate and find the locations of any remaining cancer. I found that their staff were very caring and efficient. I do not know if they do the Lu177 PSMA therapy, but the London Clinic, Guys Hospital and the Royal Marsden Hospital all do it for around GBP 50,000