LU177: Hi We have just returned home... - Advanced Prostate...

Advanced Prostate Cancer

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LU177

JanJames profile image

Hi

We have just returned home from a most disappointing appointment with the oncologist.

A quick reminder my husband was diagnosed in 2009 with locally advanced prostate cancer. Surgery to remove prostate was aborted due to lymph node involvement, started zoladex injections and had 39 fractions of radiotherapy which worked for almost 5 years.

Since then he has had Casodex, Enzalutamide, R223, Docetaxel, Cabazitaxel and recently Abiraterone all of which have failed although Enzalutamide did work well for around 20 months.

He now has mets to bones, lymph nodes, and very recently secondary penile cancer for which he is due to start radiotherapy next week.

We have been looking at LU177 treatment in Germany and have started negotations with Heidelberg providing his PSMA scan shows that he is suitable.

Our oncologist is extremely negative about the treatment and says that there is no scientific evidence to prove that it works and if it does then it only extends life by a few months. We are not wealthy and will need to fund the treatment ourselves from our retirement fund. The oncologist is talking about meeting up with a palliative care team and deciding where my husband wants to end his life and says we must discuss this as he has used all available drugs available in UK.

Both my husband and myself are fighters and try to remain positive but discussions like this today really knock us back.

Any opinions on LU177 treatment please?

44 Replies

He's right that there is no long term evidence of survival increase, only effects on PSA. He's also right that the survival increase is probably a number of months - which is what is expected for ANY therapy used in late stage PC. The Ac-225-PSMA trial compared survival to historical controls and found a least a 4-month benefit. There is a US randomized trial that will tell us what effect Lu-177-PSMA has on survival. At the bottom of the following are links to studies so far about these PSMA-based radiopharmaceuticals:

pcnrv.blogspot.com/2017/09/...

JanJames profile image
JanJames in reply to Tall_Allen

Many thanks would you recommend we go for it?

Tall_Allen profile image
Tall_Allen in reply to JanJames

Only you can make that decision.

So far it has been a fairly easy treatment with minimal side effects and quality of life in between. As Tall_Allen said it is up to you. My father has seemed to feel better with less aches and pains after the first treatment ( trial in Omaha Nebraska). All we are asking for is that whatever time he has he will enjoy and have the least amount of suffering.

The Vision trial...DD, what was his PSA before he started the LU-177 and now ?

PSA 300, only has had 1 treatment. His PSA is to be drawn every 6weeks. Two weeks after his initial treatment his Oncologist has to draw levels and it went down to 286. But more promising is that he had a large palpable inguinal lymph node and it has begun to decrease in size.

He will have his 6 week PSA drawn October 19. If you follow my post I have been updating pre/post treatment

Yes Vision Trial

Break60 profile image
Break60 in reply to Tall_Allen

TA

Which treatments confer only a few months of additional survival? I assume that’s median survival? Does each treatment show a range around the median?

Bob

GP24 profile image
GP24 in reply to Break60

Bob,

the study below indicates an additional 10 weeks survival after three cycles of an Lu177 therapy:

jnm.snmjournals.org/content...

However, if the disease is progressing after that you can repeat the Lu177 therapy:

jnm.snmjournals.org/content...

Plus you can hope to destroy a lot of the castration resistant cells with the Lu177 therapy so sensitivity for ADT is restored again:

ncbi.nlm.nih.gov/pubmed/269...

Tall_Allen profile image
Tall_Allen in reply to Break60

You are quite right that it is only a median - some do quite a lot better. When used in end stage PC, ALL the approved second line medicines add a few months to median survival - Zytiga, Xtandi, Taxotere, Jevtana, Provenge, and Xofigo. When used earlier, they may add more.

Break60 profile image
Break60 in reply to Tall_Allen

What is considered “end stage”? I thought it was the point where every available treatment has been tried, the cancer nonetheless continues to progress and the patient is in hospice.

Obviously it cannot be that .

Bob

Tall_Allen profile image
Tall_Allen in reply to Break60

I'm talking about metastatic castration-resistant PC. As in this study where docetaxel added 2.4 months in contrast to early use in the multiple met setting where it added 17 months.

nejm.org/doi/full/10.1056/N...

I had treatment with lu 177 PSMA in October 2016 at the Technical University of Munich. I had good results. After 1 treatment the lymph node metastases become PSMA negative according to a Ga 68 PSMA done 5 weeks after the treatment. I did not have undesirable side effects.

Patients with a larger tumor load will need more treatments. At that time they offered me up to 6 treatments. The actual number of treatments will depend on the cancer load, the response to the treatment and the effects of the radiation in other organs expressing PSMA, particularly, salivary glands, lachrymal glands and kidneys.

These are some links to articles about Lu 177 PSMA.

ncbi.nlm.nih.gov/pubmed/269...

ncbi.nlm.nih.gov/pubmed/297...

ncbi.nlm.nih.gov/pubmed/300...

Heildelberg is also using Actinium 255 PSMA that apparently is more effective than Lu 177 PSMA for bone metastases. Actinium 255 PSMA may have more undesirable side effects than Lu 177, particularly problems with the salivary glands.

ncbi.nlm.nih.gov/pubmed/302...

ncbi.nlm.nih.gov/pubmed/293...

JanJames profile image
JanJames in reply to tango65

Thank you, can I ask how advanced was your cancer at the time of treatment?

tango65 profile image
tango65 in reply to JanJames

I had lymph node metastases in the pelvis and abdomen up to the renal arteries. There were 5-6 metastases very positive for PSMA and many other which were less positive. Radiotherapy treatment or extensive lymph node resection were rule out .

I was in ADT and the PSA had decreased from 10 (when they did the first Ga 68 PSMA PET) to 0.8 at the time of treatment with Lu 177. The doctors in Munich decided to do another Ga68 PSMA PET the day before doing the treatment and all the metastases where present, so they went ahead with the treatment.

Search for Lu 177 in this forum. There are many posts about the subject. This is one of them:

urotoday.com/recent-abstrac...

RAF59 profile image
RAF59 in reply to tango65

Tango65 nearly two years since your first treatment how are you doing now? Has the Lu-177 treatment continued to work for you?

tango65 profile image
tango65 in reply to RAF59

I continue in ADT. My PSA is around 0.06-0.08.

RAF59 profile image
RAF59 in reply to tango65

That's fantastic!

Please know that Palliative care is not giving in or giving up. It is there to support you and your husband. You can take advantage of palliative care while you continue treatments if you like. The decision to travel to Germany for treatment? Only y’all can make that choice.

Hello Jan,

I am not an expert but here is what I have read about Lu-177 treatment. As with all other treatments, it is my understanding that the Lu-177 can work terrifically well for some patients, hardly at all for others, and somewhere in between for most. It targets cells that express prostate specific membrane antigen (PSMA) with an antibody that seeks out those cells and has a radioactive atom attached to it. The men who have lots of PSMA can get lots of benefit with the radiation killing the tumor cells that have PSMA and leaving healthy cells alone. Men who don't show much PSMA won't get much benefit. If the PSMA scan shows lots of cells, then I think it's worth strongly considering the Lu-177 treatment. If it doesn't then the treatment may just be a diversion of time and money that you'd rather spend in other ways.

One good thing about the treatment, again as I understand it, is that failing all of the hormone and chemotherapies does not mean anything with respect to PSMA. Your husband is still "naive" to that treatment.

I wish you the best of luck.

Alan

JanJames profile image
JanJames in reply to AlanMeyer

Many thanks

have you look into immunotheropy ie. Keytruda

JanJames profile image
JanJames in reply to George71

I don't think it is available in Uk but will check it out

The_Don5 profile image
The_Don5 in reply to JanJames

was avail on keynote study with royal marsden and Prof de bono

how old is he? what is his psa? how long has he had pc? now u don't mention lupron shots to bring down his testosterone or zytiga which brings down psa's? i'm on a sort of new tx called PROVENGE its used for pts who have fair to high psa's and he's on the down leg. my psa was 28 last month with minimum mets since not on zytiga its gone to 60. to me oncologists are maintain docs. mine specialty is breast cancer and mine is far for those sexy breasts. get a second opinion and ask him about PROVENGE its been around since 2006. charlie

Was he PSMA positive? Can you contact them in Germany and speak with them?

I believe that provenge is only available in the USA

Hi

His PSA was 36 three weeks ago but is rising every month, he does have Zoladex which I think is equivalent to your Lupron. He has just come off Zytiga as PSA continued to rise. Provenge is not available in UK. We have exhausted all standard treatments available here in GB and that is why we are looking at LU177

I don't understand some medical oncologists, he's obviously closeminded and stuck with the standard of care. Why not trying? What he has to lose? I read of several men getting even full and lengthy remissions with Lutathera (Lu177), it might not work but at this point anything might help to give extra time. There's also Actinium (AC-225), another promising radiopharmaceutical.

Did he also try BAT? Provenge? Rechallenges with Xtandi and Zytiga after chemo? Sometimes taxanes can restore sensitivity to these drugs, there's also several clinical trials with experimental drugs if he qualifies for it.

Also ask for Darolutamide if it's available in clinical trials, it's a new drug that might work after Xtandi and Zytiga have failed.

Don't give up and ask for a second opinion.

JanJames profile image
JanJames in reply to Dalph87

Many thanks

I am in the US and when I researched costs in Germany and Australia I found a significant difference.

Australia charges 10k (us) for each infusion and 1k (us) for each PSMA scan. I exchanged emails with a Nat Lenso Nat.Lenzo@genesiscare.com

Germany has a range but the best pricing I found thru Booking Health was 13k (us) for each infusion and 3k (us) for each PSMA scan

bookinghealth.com/disease/l...

What about Cannabis Oil. Has to be a consideration

JanJames profile image
JanJames in reply to paulparry

Where can I get this in UK?

"... have started negotations with Heidelberg providing his PSMA scan shows that he is suitable"

You can get the PSMA PET/CT scan in the UK:

stricklandscanner.org.uk/ab...

Apparently: " If you're NHS, they charge your trust costs only."

JanJames profile image
JanJames in reply to GP24

Thank you

I don’t see any mention of a genetic profiling. Given the fact that there are targeted therapies available these days, you may want to consider it. It’s not very costly.

Jan. So sorry to hear about the monsters advance, have you talked to a medical oncologist, I’m not sure they are different there. Has he had chemo. Don’t give up 🙏🙏🙏🙏🙏

Yes, he is under a clinical oncologist. He had two different chemos Docetexal and Cabazitaxel but both failed and PSA continued to rise, since then he had Zytiga which also failed.

Oh, what a terrible, terrible setback. I know this kind of meeting is in our future. You have been given great advice and I can only add that my husband and I have made the decision to review every step of his treatment through a quality of life lens. For him as well as MY future, which will, in all probability, be without him.

This is speculative because no one is terribly good at predicting their own future behavior. At this time, we do NOT plan to pursue any treatments that extend life for only a few extra months especially if the side effects are onerous OR IT will break our modest retirement savings bank. He is very clear about this. He wants a good life for me, now and later. We have explored local palliative and hospice care options for when that time comes.

Again, my sympathies and good luck navigating the difficult road ahead.

JanJames profile image
JanJames in reply to Haliday

Thank you so much

When making a decision, you have to consider several factors. Most importantly, as Tall Allen points out, there is no long-term evidence of a survival advantage. However, if there was a chance of a benefit and you wanted to take it, you have to weigh the other factors against this course of action. If the treatment was free as part of a clinical trial, I think most would agree you have nothing to lose as long as there are no significant negative affect on quality of life as a result of the treatments. But you wrote that you would need to take money out of both of your retirement funds to pay for this treatment. You and your husband have to consider what effect this would have on you after he dies. My husband would not want me to undergo financial hardship after his death just to gain an extra three months of life. Your decision needs to be based on your unique circumstances. Whatever you decide, I recommend considering palliative care and focusing on his quality of life for however much time remains.

JanJames profile image
JanJames in reply to Raymonda100

Many thanks, great advice

I agree with Snoraste. There could be genetic mutations that would allow for a targeted therapy. You might want to consider this. Additionally, if you have offspring this would give them a heads up.

Dr. Bono at Royal Marsden (in London ?) is one of the leading prostate cancer researches in the UK.

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