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[PeturB]

Diagnosed with advanced prostate cancer aged 71 mid 2015. PSA 13 and Gleason score 9. Following 7 weeks of radiotherapy I was subsequently informed the cancer had metastised to my bones, lymph nodes, and lungs. Currently on Enzalutamide with fingers crossed!

[Dr_WHO]

Welcome. Sorry for your diagnoses, but you are with family here. There are many people here with metastatic cancer (including me). Many have been here for over a decade. There is hope!

People have had great luck taking Lupron with Zytiga. Perhaps for can ask about that. You may also want to ask about Xtandi.

Know that you will never be alone. We are all with you. People like us we have to stick together!

[Clarejb]

Hello,

Sorry to hear about your diagnosis. It is a very similar one to my dad's who also has spread to the pelvic bones, rib, lymph nodes and lung. He is on ADT and has just started chemo, it's early days yet but at the moment he feel quite well. Have you been through chemo? I've read some of the responses to your post, they are really positive and I hope you get some more great info and options for treatment. Wishing you all the best

Clare

[MyDad76]

10k is the cost of one session? Thanks

[BigM62]

I thought i read Prostvac was halted? Do you still have contacts?

[Hidden in reply to BigM62]

It was stopped for CRPC but there are studies for hormone sensitive cancer or in combination with other drugs.

clinicaltrials.gov/ct2/resu...

The contacts I have are at NIH in Bethesda.

Anything, please let me know.

Best

Raul

[Hidden in reply to BigM62]

In addition, you are very young and to my knowledge chemo in prostate cancer has a median survival advantage that is measured in months and not in years. In other words, doing chemo will prolong your life but it is limited.

Perhaps you should consult with your doctors about going to Germany for PSMA Lutetium 177 treatment. This treatment can improve patients significantly. The cost is around 10K euros.

I have contacts in Munich since I had a treatment there in 2016 which cleared all my lymph nodes metastasis (multitude of metastasis in pelvis and abdomen).

I am in frequent contact with the doctors in Munich since I know I will need more treatments in the future.

Anything, please let me know.

Best wishes and good luck

Raul

[Hidden in reply to BigM62]

I think there is a prostvac study you could qualify:

clinicaltrials.gov/ct2/show...

Raul

[Daddysdaughter]

Would you know if the lutetium works on NEPC?

[Hidden in reply to Daddysdaughter]

Hi:

It depends on the expression of PSMA by the cancer cell.

I could not find specific information about PSMA Lutetium 177 treatment and neuroendocrine cancer but I will consult with contacts in Munich or UCLA and see what they have to say.

My understanding is that castration resistant prostate cancer express more PSMA than hormone sensitive PC. NEPC is castration resistant by excellence, so we could assume that Lutetium 177 PSMA will be effective, but I am not 100% sure.

FYI a recent article about this therapy. They say that castration resistance cancers are an ideal target for this therapy:

ncbi.nlm.nih.gov/pmc/articl...

When I have more information I'll let you know.

Best wishes

Raul

[Tonyliv]

Hi Raul

I'm impressed by your clear and consise posts, and your longevity is testament to your treatment choices.

I'm new to this site, have read some scattered posts, and unsure of protocol, started a conversation about PSMA Lutetium 177 as I wanted to pull some threads together on this very interesting subject. You are all part of a impressive community; where would we be without the internet!

I'm UK based, 58 years old, and last October was fit, playing my normal weekly squash and running. Felt tired, developed night sweats, thought I'd caught a bug and got some antibiotics from the doctor.

Couldn't shake it off, went back and a blood test flagged a warning PSA of 63 followed by a MRI and bone scan which confirmed diagnoses with T4 prostate cancer 4th December 2017, Gleason 9, spread to lymph glands, metastactic from hips through spine to skull. Luckily a CT scan shows no spread to organs.

Pretty much over the shock and fear, and have embraced the horror. Started hormone treatment (degarelix) same day, and apart from some expected hot flushes, no side effects, so this January, started chemo as well (docetaxel). Just had my second of six sessions, three weeks apart, and the prior blood tests show the PSA dropping to 7.2 then 1.9 a couple of days ago, which would seem to indicate I'm responsive to treatment.

I'm still getting to grips with the whole thing, but as a layman as I understand it, I'm on hormone treatment for life, the chemo will knock the cancer down, then it's a waiting game to see if the remission is months or years before you become resistant, followed by a second line of defence with drugs like arbiritone and further chemo to try to kick the can down the road.

I've only had an hour with a doctor registrar who took case notes and explained why the chemo was run in conjunction; I'm not meeting my actual consultant oncologist until next month, and want a meaningful conversation with him.

Is this treatment to be used as a card much further down the line once I'm becoming resistant, or should it be looked at once when I'm through the chemo? For my part, anything that attacks the cancer and stops it spreading is surely worth trying, and the sooner the better, but does the NHS get annoyed with breaking their procedures or protocol in case they have to pick up the pieces? Would they only consider this when my PSA is rising and treatment failing after further rounds?

Is PSMA PET scan for suitability obligatory? I read on a thread that someone is getting one done at the Marsden to assess suitability for Germany and wanted to mention this for referral if possible, or know how to get one by paying if not. If you are suitable, will they refer to Germany, and who pays? Is the Royal Free in London recruiting? I'm lucky enough to be able to afford the treatment in Germany, but not sure where to start. I'd appreciate any advice from this knowledgable community, and hope to be around for a good while to contribute.

Thanks for any input.

Cheers,

Tony

[Hidden in reply to Tonyliv]

Hi:

Very difficult to hear that one has metastatic disease. It is my impression you are being correctly treated with ADT and chemo. See this informative article (if you are interested I could find the articles of the actual studies):

targetedonc.com/news/doceta...

Adding docetaxel to ADT offers a median survival advantage of 10 months when compared with ADT alone. The median survival with docetaxel and ADT is around 80 months . In other words, 50% of people in this therapy will survive 80 months or less and 50% will survive 80 months or more.

I believe you should discuss with your doctor to get a Ga 68 PSMA PET/CT study. If positive (chances are it will be since you PSA is 1.9) I believe you could be a candidate for PSMA Lutetium 177 treatment.

The reason to do the GA 68 PSMA study sooner than later is to know if your cancer shows PSMA, since around 20% of the cancers could be PSMA negative. This could be done when in chemo, since the Gallium 68 has a very low radioactivity and its half life is around 4 hours and it will not affect the bone marrow.

All studies and treatment can be done in Germany, Holland, Austria, Australia, etc. The pioneer group is in Heidelerg and my experience as a patient is with the Technical University of Munich.

This is a review article with information about the Lu 177 treatment:

ncbi.nlm.nih.gov/pmc/articl...

When to do the Ga 68 PSMA study and the Lu 177 treatment is something you will have to discuss with your doctors, but the decision to proceed with the Ga 68 PSMA and eventually the Lu 177 PSMA treatment should be your decision. Doctors do not necessarily agree with or offer treatments they can not perform.

One has to be aware that probably there is castration resistance cancer even when one is responding to ADT. I think that these "hormone sensitive metastastic cancers" are really a mixture of resistant and sensitive clones.

This concept could explains why by adding docetaxel to ADT offers a survival benefit. It also explains why most patients in this situation treated with ADT alone do not achieve a PSA <0.2 and even more patients never achieve a PSA <0.05.

The other problem is that chemo may affect the immune system. The immune system is the main gatekeeper once the tumor load has been significantly reduced and the treatment stopped.

If you qualify for LU 177 PSMA treatment perhaps to do it sooner than later will be the best option. As I said after discussing with your doctor and the doctors doing the Lu 177 treatment your will have to make the decision of proceeding and when to do it.

If you are interested in pursuing this avenue of treatment or others, please let me know what you need to get oriented and I will try to help in this regard.

I have contacts in Munich and at UCLA (UCLA has a clinical trial of Ga 68 PSMA, it cost $ 2700 and possible a trial of Lu 177 treatment). The GA 68 PSMA study done in Munich cost about the same and the Lu 177 treatment in Munich cost around 12K euros.

Anything, please let me know.

Best wishes and a lot of luck

Raul

[Tonyliv in reply to Hidden]

Thanks for the comprehensive, considered and knowlegable reply Raul. I aim to discuss this in depth with my oncologist next month. I'll keep you posted.