Lutitium Off Label: Has anyone been... - Advanced Prostate...

Advanced Prostate Cancer

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Lutitium Off Label

shipoo profile image
13 Replies

Has anyone been able to get Lutitium off label and paid by Medicare? I have peripheral neuropathy and have not had chemo (which I understand can increase the neuropathy). My doctor said I might be able to get it “off label” i.e. without having chemo first. He cannot say if Medicare will pay for it since Medicare does not require prior approval. I’m concerned that I’ll get the treatment and then Medicare won’t pay. My last PSMA scan showed an increase in size and number of the cancer cells in the prostate and lymph nodes and some mets in the bones of the hip. I am also PSMA avid. My PSA has been dropping over the last 6 months, but is still high at 5.4

My main questions are: Has anyone gotten Lutitium without having had chemo, did Medicare pay for it, and where was the treatment done?

Thanks for any info provided.

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shipoo
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Tall_Allen profile image
Tall_Allen

The inclusion criterion from the VISION trial says:

"Patients must have been previously treated with at least 1, but no more than 2 previous taxane regimens. A taxane regimen is defined as a minimum exposure of 2 cycles of a taxane. If a patient has received only 1 taxane regimen, the patient is eligible if: a. The patient's physician deems him unsuitable to receive a second taxane regimen (e.g. frailty assessed by geriatric or health status evaluation, intolerance, etc.)."

So, it sounds like you have to have at least one infusion.

There are some trials that don't require previous chemo:

prostatecancer.news/2020/08...

shipoo profile image
shipoo in reply toTall_Allen

Thanks for the info. Still a question: If I have only One infusion of chemo and then the doctor says I cannot have a second infusion due to medical reasons, do I now qualify to receive Lutitium even though I did less than two infusions?

Tall_Allen profile image
Tall_Allen in reply toshipoo

That's what they said in the VISION trial. The FDA approved Pluvicto based on that, so CMS should approve. Get pre-authorization, of course.

tango65 profile image
tango65

You could get it abroad or in a clinical trial. This is a list of Lu 177 PSMA clinical trials in the USA:

clinicaltrials.gov/ct2/resu...

shipoo profile image
shipoo in reply totango65

Thanks for the list. Very helpful

tango65 profile image
tango65 in reply toshipoo

You are welcome. I wish you the best of luck.!

ARIES29 profile image
ARIES29

Do not consider coming to Australia unless you have had chemo first.I had 2 LU-177 treatments before they discovered I had not been on chemo & they promptly cancelled the third treatment. Two years later the PSA was up to 19.

Was it worth $20K? NO!

shipoo profile image
shipoo in reply toARIES29

I appreciate you taking the time to tell me of your experience. I wish you the best.

Seasid profile image
Seasid in reply toshipoo

One member received 3 Lutetium infusions in Finland without previous chemotherapy. He received 3 cycles of docetaxel chemotherapy after the 3 Lutetium infusions.

shipoo profile image
shipoo in reply toSeasid

I’m in USA and going to Finland not feasible for me, but thanks for taking the time to respond. Your suggestion may help others.

Seasid profile image
Seasid in reply toARIES29

Go to Finland

Magnus1964 profile image
Magnus1964

I treat my periferal neuropathy wit gabapentin and Tylenol.

shipoo profile image
shipoo in reply toMagnus1964

I’ve also been using gabapentin for my neuropathy. Thanks for your suggestion.

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