Lutetium 177: is anyone recently or... - Advanced Prostate...

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Lutetium 177

FionaElbourne profile image
25 Replies

is anyone recently or currently having Lutetium 177 in a German clinic, my husband has run out of options in the UK so we are considering Germany as it seems cheaper than the UK as we are self funding.

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FionaElbourne profile image
FionaElbourne
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25 Replies
RyderLake2 profile image
RyderLake2

Hello,

It is certainly worth looking into. The Germans pioneered the use of Lutetium. They will give your husband a PSMA (prostate specific membrane antigen) PET scan to see if he has the type of prostate cancer that responds to Lutetium. In other words, is he PSMA positive? The place I tried was the Universitats Klinikum des Saarlandes (UKS) in Homburg, Germany. It is a much smaller city than Cologne, Heidelberg, Dusseldorf or Berlin but Homburg does have a big hospital. The lead doctor is Doctor Samer Ezziddin. The Klinik fur Nuklearmedizin is a very nondescript part of a much bigger hospital (and a little hard to find) but the staff are excellent and most of the nurses and all the doctors speak English. Good luck!

Tall_Allen profile image
Tall_Allen

After all is said and done, it may be cheaper to get treated in India:

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witantric profile image
witantric in reply toTall_Allen

it is around 5-6 k in India per treatment. Of course travel and hotel costs are additional. That might add 2k. So total will be around 8k

Tall_Allen profile image
Tall_Allen in reply towitantric

US dollars, right?

witantric profile image
witantric

Yes. In rupees that would be too good a deal 😀

FionaElbourne profile image
FionaElbourne

Thankyou I will try the German clinic, as we also have my daughter living in Germany who could help us. The flight to india would be too much for my husband,but I agree it’s so much cheaper.

Benkaymel profile image
Benkaymel in reply toFionaElbourne

I don't know your husband's situation but there is a chance, albeit small that Pluvicto may be approved for use as a last resort treatment on the NHS later this year. I believe a report is due in March but don't take my word for it.

FionaElbourne profile image
FionaElbourne in reply toBenkaymel

Thankyou, unfortunately we can’t wait that long as our oncologist in Glasgow is not confident they will get the budget approval which seems to be the issue.

Benkaymel profile image
Benkaymel in reply toFionaElbourne

Yes, apparently it's around £15k to £20k per infusion in the UK.

Finlay66 profile image
Finlay66

I'd be really interested in the cost of this as I'm in a similar position. As others have said you obviously need to factor in the travelling time and cost.

FionaElbourne profile image
FionaElbourne in reply toFinlay66

I will keep you posted.

Proflac profile image
Proflac

Hi. Also a UK wife. I would be very interested in what you decide and what it costs - as could be in similar situation at some point. Have you thought about getting the PSMA scan privately in UK? Save the expense and trouble of travel etc if its not a viable option? I am not that confident that NICE will agree to fund LU though hoping.... . I am sure you are aware you can get LU in the UK. Don't know costs vs Germany. And I guess the Germans have more experience with this tx so might be worth a premium. Hope its an option for you and you get a good outcome.

FionaElbourne profile image
FionaElbourne in reply toProflac

we have just contacted the London clinic to get the scan hopefully in the next couple of weeks. If the tumours have the correct proteins then we can go to the next step. I’m struggling to understand why the German clinics think 2 or 3 treatments is all that is needed when the UK it looks like 6 treatments,

GP24 profile image
GP24 in reply toFionaElbourne

Novartis designed the Pluvicto trial similar to the Xofigo trial. Therefore six cycles, sometimes just four with Pluvicto.

In Germany they check after two cycles with a PSMA PET/CT how well it worked and then discuss with the patient, if additional cycles would be beneficial. Often the therapy has removed most metastases after two cycles so one can treat the rest some time in the future. In this case you can get more than six cycles - if you can afford it.

FionaElbourne profile image
FionaElbourne in reply toGP24

Thankyou for explaining this it is very helpful to understand the differences between the 2 locations.

Benkaymel profile image
Benkaymel in reply toFionaElbourne

As you're self funding I would think you could pay for a PSMA-PET scan after 2 cycles in the UK too.

FionaElbourne profile image
FionaElbourne in reply toBenkaymel

I was thinking that too, hopefully I will have more details next week to help us make a decision. Thankyou

GP24 profile image
GP24 in reply toFionaElbourne

I just read that in Melbourne they gave a patient 17 cycles of Lutetium 177:

Dr. Hofman in Melbourne (Peter Mac) reports that he gave a patient 17 Pluvicto cycles.
FionaElbourne profile image
FionaElbourne in reply toGP24

We will be lucky if we can afford 6 never mind 17, but good to know it’s possible. Thanks for sharing.

GP24 profile image
GP24 in reply toFionaElbourne

You could get two cycles in Germany and then wait for Pluvicto approval in the UK, to get additional ones. Even one cycle can make a difference (it did for me).

FionaElbourne profile image
FionaElbourne in reply toGP24

That’s a good shout, I wasn’t sure if you started somewhere whether you could switch. Thankyou.

Brysonal profile image
Brysonal in reply toFionaElbourne

I travelled from the UK to Finland for early Lu-177 and there they check after each one and decide on the next but say the first three are where you get most benefit I responded ( multiple skeletal mets) really well but my Finland onco was insistent I follow up very quickly with 3x Docetaxel to deal with any non PSMA avid cells left. This I could have done in UK ( UK onco was signing forms to organise but I decided to use Finland for that too ( chemo is v cheap in comparaison to Lu-177 and I trusted the team by then. Do mi e was an unusual 3x Lu-177 followed by 3x chemo. Non SOc of course but made sense to me as everyone agrees PCa cells are heterogenous so just hitting the PSMA positives 6 times does seem questionable and though I was trying to avoid chemo initially was pleased after I did both starting with Lu-177.

FionaElbourne profile image
FionaElbourne in reply toBrysonal

thanks for that my husband had 6 rounds of Docetaxel back in 2015 just after he was diagnosed. We did discuss with his onco whether we could try that again, but he said that isn’t normally done. He has also had 10 Cabitaxel last year but it just kept the PSA steady and as soon as chemo stopped it just started climbing again. So Lu177 I think is the only option.

leebeth profile image
leebeth

Another option to consider is Turkey. There is a hospital there that is an affiliate of Johns Hopkins. Anadolu Medical Center, Dr Kezban. You could compare pricing.

When my husband was there, his porter was telling him of various sports figures and well known names who had received treatment three. Apparently HIPAA is not a thing in Turkey. 😂

FionaElbourne profile image
FionaElbourne in reply toleebeth

Thankyou I have an agent looking at other options for me.

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