Just did the F-18 DCFPyL test and found that the cancer has spread quite a bit all over the body. Nothing has been contained at all.
So, in just under a year, I have been on Eligard (till now) Radiotherapy (38 fractions) and Docetaxel (6 cycles). ALL HAVE FAILED. What do I do now ??
I'd be grateful for any suggestions. Thank you very much, indeed.
While you are deciding,
1. Start setting up some lu177 treatments. That will involve you getting a psma scan. Start setting it up now. Make your decision later.
2. Call Dr. Sartor's academic office at Tulane. Convert the above into a short elevator pitch, and explain you are seeking bipolar testosterone therapy and need a really early appointment.
3. Collect all your important medical records into a package that you have personal physical control over.
4. Get ready to travel.
Whoever is doing the lu177 will want to do the pmsa scan.
You will need to do the psma scan prior to doing the bipolar testosterone.
Along the way you can ask Sartor and whoever is doing the lu177 for additional treatment options. Sartor doesn't do lu177 but may be able to find someone who does.
Sartor may want to do non-bipolar testosterone. I would be dubious about that until after there is a published clinical trial on that, or at least until you see some results from the bipolar.
1) I have just had a PSMA scan 2) I am Bombay based. 3) Lu-177 is not yet SOC in Bombay and unlikely to be recommended by my MO just yet. I cannot get a hospital to treat me without a doctor recommending me. Despite my paying in full, no insurance.
"I cannot get a hospital to treat me without a doctor recommending me. Despite my paying in full, no insurance."
You can go to Germany for LU177 treatment or to Australia. I understand Australia is very inexpensive.
Thank you, cesanon. I will look into Australia first.
Thanks again and all the very best.
I would search around this forum. There are several people here who have mentioned specific docs there. And one of them mentioned an unbelievably low out of pocket cost.
Thanks again, cesanon. I'll "search" this forum for information on Zofigo and Australia.
That was for the lu177 as opposed to Xofigo.
Right, cesanon, my bad.
Have you been on any of the standard ADT drugs, Xtandi, Casodex, Zytiga?
Yes, I have taken Casodex & Eligard. Not Zytiga or Xtandi as yet. Would the latter two be of some value, you think ?
Everyone responds to ADT drugs differently. I certainly would not ignore them. With Prostate Cancer any treatment could have a significant impact. I have gotten 3 to 4 years from each Zytiga and xtandi.
Thanks, Magnus1964.
A good next step would be Xofigo followed by Zytiga or Xtandi. I think Provenge might be particularly effective if used while on Xofigo.
I have to check whether Xofigo is available in Bombay. Provenge is available for sure.
Thank you, Tall_Allen.
"I think Provenge might be particularly effective if used while on Xofigo"
What causes you to think that?
Good question, cesanon. I, too, would like an answer to that.
Thanks for asking.
I think there is a synergy. The immune response is encouraged by the antigens from all the metastasis cells killed by the Xofigo. At the same time, the Provenge compensates for the myelosuppression caused by the Xofigo. It's a win-win.
pcnrv.blogspot.com/2016/08/...
Myelosuppression
A condition in which bone marrow activity is decreased, resulting in fewer red blood cells, white blood cells, and platelets. Myelosuppression is a side effect of some cancer treatments. When myelosuppression is severe, it is called myeloablation.
"the cancer has spread quite a bit all over the body"
To bones, tissue or what?
To bone and tissue both. But, in terms of qty, mainly to the bones.
Then perhaps that Bayer Xofigo with the 223 radiation should be put on the menu.
Any of the metastasis near tricky or dangerous anatomical structures?
One in the left lung. One in the right parietal bone (skull). One in the left neck. Two in the ribs. That's what I remember. The actual written report, the films and the CD for the test done yesterday (2/23) will be in my hands on Tuesday (2/26).
Maybe some sbrt or proton therapy for any dangerous locations?
Good point. I shall definitely bring it up with my radiation oncologist.
Thanks for this new idea, cesanon.
I read your profile, and you have not done genetic testing of your cancer. This would be helpful.
Also, are you a diabetic and if so, do you have your blood sugar under control ? Are you overweight and do you snore? Do you exercise? These questions are important in regards to your cancer, and your health. Cancer uses sugar for fuel, as well as stromal fat cells, and progresses with people that snore/have sleep apnea.
I did find a trial in India and you may wish to check out the locations, and it involves enzalutamide.
clinicaltrials.gov/ct2/show...
You can find contacts and locations in the small blue box on the right of your screen...The enzalutamide would be free and the testing also... Some things to consider....
All the best,
Fish
I checked out the "genetic testing" bit after someone on this board suggested it. I spoke to the Indian arm of the US co that does it here in Bombay. The price is INR 420,000/- (6000/- US$), the time taken 60 days (stuff is sent to the US ) and the chance of success barely 10% (as candidly mentioned by them). Also, spoke to 3 other MO's who confirmed that it is really not worth it. So, I have dropped the idea.
As regards the "trial" in India, I will check it out, but frankly, do not expect much to come off it. Lets see.
Thanks, Fish, for taking the time and trouble to help out. Cheers !!
My addition to the wise counsel in the forum is that Dr Nat Lenzo in Perth Australia may consider administering LU177 PSMA 617 and/or AC225 PSMA 617 for both early stage and advanced PCA. Its not cheap but it is not a ridiculous price either. The advantage of AC225 PSMA 617 is that if your disease is highly active - as seems to be the case - then this nuclear peptide will bond with the PSMA and bust both strands of the cancer DNA resulting in a high probability of cancer cell death - wherever it might be in your body. The downside is moderate 'dry mouth' with one cycle which becomes permanent with multiple cycles. Three cycles of both nuclear peptides would cost about AUD 60,000. The other downside is that such treatment is experimental in nature and won't be supported by fully articulated trials for several years. That said, the anecdotal evidence is pretty good - particularly when you are running out of options that work. I wish you the very best. Harry
Thank you very much, Harry, much obliged.
If interested in Lu 177 treatment in Australia go to the Theranostic website : theranostics.com.au/lutetiu... The cost per treatment is A$10000 plus travel and accommodation. You will need a PET/CT PSMA scan first.
Thank you very much, WimS, much obliged.
I am reading your link right now and the cost of A$10,000/- seems very much doable.
Thanks again, WimS. All the very best to you.
Suggest you don't think about 177 without considering 225. Best. Harry
Thanks, Harry. Cheers !!
Also, you might need Gallium PET Scan before deciding the cost-benefit. H
I already had a PET-CT scan done yesterday (2/23/2019) at Breach Candy Hospital, one of the most reputed hospitals in Bombay.
Docetaxel was a fail for me. My MO indicated Jevtana should be first line treatment but insurance won’t allow it. I know everyone is different but Jevtana with Carboplatin worked really good. Then Xtandi and Lupron, it’s really holding back disease. And I had lots of bone mets everywhere and lymph’s, widely disseminated disease.
The bad part is you have no insurance and all this shit is astronomical $.
Thanks, Survivor1965. Apt name 
Agreed, its really expensive. Even though I am getting it relatively cheap in Bombay, it has already cost me more than 1,500,000 INR or about US$ 21,500 for just about a years worth of "shit". And, yes, Survivor1965, it really is "shit" with all that poison going into ones veins. And, screwing up ones brain, penis, heart, blood sugar, bones, etc, etc. One goes bald all over, one cries for no reason, one gets incontinent, oh maaaaaan, I could go on and on
Sorry to hear about your bone mets. I am fortunate I am pain free, as of now. Here's wishing you all the very best for the future. Cheers, Survivor1965.
I hate the name CANCER that they gave to this fucking disease but hell whatsinaname anyway?
Good Luck, Good Health and Good Humor.
j-o-h-n Sunday 02/24/2019 1:03 PM EST
I refrain from it’s use..
Just a note of caution about Lutetium -177 therapy. My brother was treated by Dr Renzo in Sydney, Australia about 24 months ago. Two injections at A$9600 eradicated his numerous mets. PSA dropped to near zero. Sadly 4 months ago his PSA raced up to 20. Had two more injections Dec18 and late Jan19. PSA stil dropping. Dr Renzo's partner suggests that this therapy is NOT a cure, but is likely to give two years of progression-free time, before the PCa starts again.
The problem with almost all PCa therapy is that it doesn't kill the PCa stem cells, which start their nasty work again thereafter. Interesting to note that Salford university claim to have determined how PCa stem cells give birth. This might lead to therapy to kill them off.
Thank you very much, AlanLawrenson. That was interesting information.
Two years of progression free time is worth it for me, for the price.
Thanks again. All the very best to you and your brother.
Failed all gold standard treatments and both Chemos? Whats next?
Postponing chemo because of radiation? 
Disease progressing after chemo. What now. 
Is it possible to have chemo again after radiation? 
