Need suggestions for Advanced PC

Hi Everyone, I am new to this group but not to Prostate Cancer. My husband, John, 72, has Advanced PC now with a PSA of 59 last week. We are looking for advice and ideas!

A bit of history...He had brachytherapy in 2000 for Gleason 6 cancer. The next year his PSA began to rise again. Starting in 2004 he managed his PC by using herbals including Prostasol which was a later version of PC Spes. He did well for years but then in Feb 2011 the "effective" lots of it were no longer available. At this time his PSA took a big jump. We then did obtain some more Prostasol but were never sure of its quality.

BTW the oncologist told us that although he would not have put John on Prostasol in the beginning, as long as he was doing well he was OK with it and did not see any reason to change.

PSA climbed up and then this spring the oncologist suggested that he try Casodex instead. That brought on a huge jump in PSA. I suspect that it was not the Casodex but the fact that he was no longer on Prostasol. Whenever John was off Prostasol his PSA immediately took a huge jump....then gradually came down when back on it.

Prostasol is estrogenic and probably contained low dose DES.

PSA:
May 31/12 - 24.67
July 12/12 - 51
Aug 13/11 - 59

He did have other PSA tests done in between times but at a different lab and different scale.

John had bone and CT scans done in November and again in May but they did not show any metastases.

Meanwhile, his creatinine levels increased in the spring and ultrasound showed that the ureters had narrowed where they meet the bladder. This necessitated him having double nephrostomies. (tubes into the kidneys.)

We saw the oncologist again on May 31 and he reported that much to his surprise there are no apparent mets to any other part of the body and that the disease is confined to the prostate/bladder area. Apparently the scans look much the same as they did last year and the year before. Last November when scans were done, he said "if anything, the scans look better than last year."

So, May 31 he said that he really did not have a good answer for now. He said to use the second line therapies at this point would be to treat the PSA only.

He said that PSA is a fickle measurement. So, he said to wait and see. He had told us earlier that some men will have an increasing PSA with no apparent increase in tumour. He may be more concerned now with the velocity of PSA.

John did have a Lupron shot mid May in order to insure that the T stays low. Oncologist suspected that it would anyway given John's age - 72 - and the length of time he had been on Prostasol - 8 years.

John did a short trial on Casodex in May and then was switched to Flutamide in June but oncologist then said to stop it because of PSA rise.

At last appointment - Aug 13, the oncologist said that John could go on Prednisone "if he wanted to" or to wait and see.... if PSA more than doubles in 3 months then do more scans. He is only counting from point that John stopped Flutamide!

He said that John is not eligible at this point for any of the new drugs or studies ie Zytiga.

John has no symptoms and feels good as long as he doesn't have a urinary tract infection - a problem with the nephrostomy tubes.

We are interested in getting better scans done. We live in Toronto and believe that better scanning equipment is not available here. For Canadians, seeing Snuffy Myers and going for scans at Sand Lake is a very expensive proposition. We have no insurance that would cover it. And given that there is a problem with narrowing of the neck of the ureters, the cancer is most likely around the bladder, an area that they are loathe to radiate especially in someone who has already had brachytherapy.

I have heard from a member of this group of an experimental scan trial in Arizona that I will follow up on this week.

We know of someone in western Canada who had a PSA of 15, is CRPC, who had radiation to mets and now his PSA is practically undetectable.

John had a CT scan in 2010 for another problem. He had been off Prostasol for 8 months at the time and his PSA was @30. The CT scan showed one pelvic node that was slightly enlarged. Since he had other problems at the time - major bleeding while on coumadin - that was overlooked. It has not been seen since either.

We are waiting for a referral for a second opinion and also want to get a consult with a radiation oncologist here to see about the possibility of radiation of those nodes. However, I have heard that it may be tricky to radiate in that area. Any one have experience on this?

I would also appreciate any information on oncologists and experiences in Ontario especially in Toronto.

Any suggestions/ideas are most appreciated.

Many thanks, Ocibote.

Welcome.
I've read that Lupron or equivalent hormone therapy (androgen deprivation therapy) is the main treatment after PSA rise. Casodex is often given first to prevent initial PSA flare from Lupron.
If PSA rises while on Lupron, then the patient is castration refractory / hormone independent which is most serious.
The PSA is usually monitored while on meds like Lupron.
There are a lot of trials and new meds coming. Good luck. Robert

Oci,

Some CRPC patients take keto Ketoconazole which helps many. Some take Leukine.

On another thread somebody added the Link for CRPC : www.hrpca.org/

Adjunctive meds or outside the box meds might include metformin a cheap diabetes med. Some take Celebrex a COX-2 inflammatory med. An article mentioned a malaria med also: hydroxychloroquine also Artesunate. mebendazole is a parasite med mentioned in an article.
A fungus med was mentioned in an article: Sporanox
Some people here are taking pomegranate, bee propolis, turkey tail mushroom

In trials there is Alpharadin, a drug that sends radiation to mets.
Enzalutamide / MDV3100 is close to approval in USA.
Prostvac vaccine is in trials.
cabozantinib XL184 in trials.
BIND-014 is a nanotech med in early trials here.

Provenge is approved in USA. You know about Zytiga.

Post Edited (robertcool) : 8/20/2012 2:15:29 PM (GMT-6)

Hello Ocibote,

First, just want to say that it is impressive your husband´s cancer has been kept at bay for 8 yrs with Prostasol. I have heard of it, but never thought that its effectiveness could be that great.

You are facing a decision, as I see it, whether to go down the radiation route, or use a systemic treatment. If you decide to go down the radiation route, my piece of advice would be to use extremely sensitive scanning techniques (Cholin PET, Acetate PET, NaF Sodium bone scan) since they will most likely show ALL lymph node or bone involvement. To do radiation based on a partial or inaccurate or not-so-detailed scan would be expensive, ineffective, and produce side-effects. Therefore, if you do radiation, make sure the radiation oncologist KNOWS WELL everything he needs to radiate. No sense in radiating 3 lymph nodes, if cancer is hiding in the 4th one, the one which did not show on the CT scan, for example. All the best!