Prostate cancer has returned, conside... - Advanced Prostate...

Advanced Prostate Cancer

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Prostate cancer has returned, considering experimental therapy (if I can get it).

TwilightZone profile image
17 Replies

Had prostate removed December 2015. PSA remained low, nearly undetectable, at quarterly PSA checks, over the next ten quarters. Sept. 2018, PSA reached 1.43, was placed on Lupron in Oct. 2018, will have 40 radiation appointments, starting mid-December 2018. In Feb. 2019, radiation ends, and wait until April 2019 to evaluate how Lupron/radiation/Lupron sequence worked. Norvartis acquired a U.S. company that's come up with a targeted therapy: Actinium 225, Prostate Specific Membrane Antigen PSMA) 617. It delivers a nuclear warhead to the prostate cancer cells. Human trials in Germany have been very promising. I want to consider this approach but so far I've been politely dissed. I'm considering a trip to Germany. Your thoughts?

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TwilightZone
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17 Replies
Spaceman210 profile image
Spaceman210

Hi, I am in a somewhat similar situation myself. I can't comment on the new therapy but highly encourage you to make such contacts in Germany. In my case I consulted with University of Heidelberg online regarding their carbon-ion therapy. While they are not offering that therapy at present until trial results are out, they performed without charge an immediate reading of my MRI scan DICOM images which had been performed at MD Anderson. To my shock their imaging people said there was an indication in prostate bed whereas MDA had said the imaging was clean. (I suppose such differences in interpretation are common though.) As a result I now have more ammo to continue the therapy discussions. Anyhow personally I'd jump at the chance to go to Germany for appropriate treatments, without hesitation.

407ca profile image
407ca in reply toSpaceman210

I had a similar imaging shock recently. Last August I had Axumin PET done in Florida. Also MRI , CT AND BONE SCANS. No mets were found but I had recurrance. In Finland they did a PSMA PETand discovered multiple mets. I believe Europe leads the US for PCa treatment. I would go to Germany .

fritz1 profile image
fritz1

I am in a similar situation except I just completed my 40 rad treatments last week. Prior to my first Lupron shot in early August, I was able to obtain a PSMA scan in connection with an NIH study. My Rad Onc at the University of Michigan (Dan Spratt-a real up and comer in his field) based his radiation treatment plan in part on the PSMA findings showing Pca in three pelvic nodes. Those nodes got special attention! Spratt says the increased sensitivity of these PSMA scans which facilitate more focused salvage radiation treatments, should reasonably be expected to increase the odds of curing the Pca or delaying post salvage recurrence from what the available nomograms would otherwise predict. The available nomograms are based on studies of salvage treatments done without the benefit of more precise radiation targeting made possible by the newest imaging technology such as PSMA scans. That said, Spratt made it clear that the new imaging techniques have not been available long enough for studies to confirm that they make salvage radiation targeting based on their findings more effective. See this link for mskcc’s salvage therapy nomogram. mskcc.org/nomograms/prostat... .

Perhaps you also have gotten a PSMA scan and your Rad Onc will have the benefit of its more precise imaging in developing his or her salvage radiation treatment plan for you. If not, you might want to discuss the subject with him or her.

Tall_Allen profile image
Tall_Allen

There are several new radiopharmaceuticals entering clinical trials. Weill Cornell is doing a dose-finding trial of Ac-225-PSMA-J591. There are also trials that haven't started yet for I-131-MIP-135, Th-227-PSMA-(antibody), and several for Lu-177-PSMA-(various ligands)

pcnrv.blogspot.com/2016/12/...

pcnrv.blogspot.com/2017/01/...

pcnrv.blogspot.com/2018/10/...

Grumpyswife profile image
Grumpyswife in reply toTall_Allen

TA or anyone else do you know of any PSMA scan study that does not require previous taxable chemo? Thx

Tall_Allen profile image
Tall_Allen in reply toGrumpyswife

My recollection is that most of them require at least one taxane treatment, but that some will also allow you in if taxane treatment is refused. In the VISION trial, they ask for two taxane regimens but will take you, if you refuse a second one or can't have another one.

tango65 profile image
tango65

To have AC 225 PSMA treatment you need a PET/CT study with Ga68 PSMA or 18F DCFpyl showing metastases. There are several trials in the USA for these PET/CT studies. To perform those studies your PSA must be greater than 0.2 , preferable around 0.3 to 0.5 or higher.

These scans are more sensitive the higher the PSA (around 95% with a PSA greater than 2).

If the scans show metastases, it will be possible to treat them with Lu 177 PSMA or AC 225 PSMA. The trials with these ligands in the USA are for castration resistant prostate cancer but I believe it may be possible for a person with hormone sensitive cancer to get treated in Germany or in Australia. I was hormone senitive and I got treated with Lu177 PSMA for lymph node metastases at the TUM (Munich) in 2016.

Perhaps Ac225 PSMA may be more effective than Lu 177 PSMA but it has more side effects, particularly permanent damage to the salivary glands.. Lu 177 PSMA may cause damage to the salivary glands but it is usually reversible.

remember drugs out of country don't mean we can get them or the place u visit has them.

boseley profile image
boseley

I understand Germany has been using Lutetium 177 (Lu177) for 9 years with good outcomes. I have recently had my first treatment with it with very little side effects. Ac225 few is a similar radionuclide treatment apparently slightly better for bone mets. Do your research. For me it is self funded so that I tried to make sure it was money well spent. Good luck And remember, every day is a day you can try and do good in this world.

in reply toboseley

What is the cost Dear Sir?

Hey TwilightZone! Great name..describes living with APC. Sorry about the PSA....Radiation and adt have worked so far for me..I wish you success with RT. The actinium sounds promising. Do you know the cost.. ? If you have the funding. By all means “ go for it”. Our hope rides with you.. Peace.

boseley profile image
boseley

I was treated at Macquarie University in Sydney. It cost $12000 Australian dollars per treatment.

HOPEFULSPOUSE profile image
HOPEFULSPOUSE

I would absolutely 100% go to Germany. We were living in the UK when my husband was diagnosed 5 years ago and initially sought out doctors in Europe. My feeling is that Germany is the best place to be if you have any kind of cancer in terms of how they treat.

in reply toHOPEFULSPOUSE

Some mentioned Heidelberg . Beautiful.

JimVanHorn profile image
JimVanHorn

Radiation (72) and Lupron for 6 1/2 years worked for me. At this time I show no cancer, but I am on active surveillance.

TommyTV profile image
TommyTV

For those considering German Clinics, this may prove interesting....

respectfulinsolence.com/201...

in reply toTommyTV

My friend Timmy went to Dr Vargas clinic in Tiajuana earlier this year. The doctors here told him he would die in 3months after surgery, radiation, and chemo. He paid about $25 k that he had to borrow. They did some form of low dose but painful form of radiation on his head and throat for stage #4 HPV neck , and throat cancer. He had a tumor the size of a hand ball around his jugular choking his life out. We prayed much for this guy before he did the treatment.. Hate to admit it but I thought he had a very slim chance of survival.. He went for two weeks. Came back in brutal suffering. Then returned weeks later for a top off round.. Six months later and he is cured!! A miracle for sure. I believe that he wouldn’t be here if he followed his Doctors here original plan. This guy did all kinds of other alt treatments well.. I would recommend Dr Vargas to someone that has been given no hope by U S doctors..

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