New member: 14 year advanced prostate cancer survivor

Nice to join a community of fellow PCa survivors and their caregivers. I am a 77 year old retired UCC minister and college professor now living in Florida following 30 years practicing my professions in Western Massachusetts. In 2002 , I was diagnosed with Stage 4 PC after a PSA of 24 and Gleason score of 8. I was told that I was not a candidate for surgery because of the high possibility of extra capsular penetration. So I retired and looked for the best radiation treatment, which I found in proton beam therapy at Loma Linda Medical Center. My treatment was augmented by EBRT and then I was advised to go on ADT for 24 months. I chose instead to do Intermittent Androgen Blockade therapy using Zoladex and Casodex. That enabled me to keep the cancer at bay for a long time while enjoying life traveling, writing and doing volunteer work. A few months ago, I reached CRPC so I am now at a crossroads. Since I am not metastasized as shown by the negative results of my recent whole body scan ordered by my oncologist, my only choice for further treatment appears to be Ketoconazole. I am negotiating with my oncologist on the level of dosage. I would like to be conservative with low dose ketoconazole (200 MG three times a day) but my oncologist says that level is useless. So I am doing a lot of research on possible side effects of a high dose (400 mg three times a day). To get myself ready, I am testing the health of my liver and starting detoxification through the right foods and supplements. I just want to buy as much time as I can because to me, quality of life is more important than longevity. Down the line, I may accept Xtandi or Zytiga but I have definitely decided to refuse docetaxel chemotherapy or its various equivalents if and when that time comes. I am an active member of Compassion and Choices and praying that Florida will follow the lead of other states in allowing terminal patients to die with dignity. Read my autobiographical book "When God Calls" by googling me or the book title at Amazon or Barnes and Noble. Write me if you want personalized autographed copies.

[CERICWIN]

I thought that Stage IV was determined by metastases, and that if a patient has prostate cancer that hasn't spread it's Stage III.

I haven't been fighting the cancer as long as yourself, but it had, in my case, spread and I also couldn't have my prostate removed because of the tumor invading the bladder and against the rectum wall. The hormone therapy shrank the prostate and lymph glands and stabilized the bone mets. My initial diagnosis was Stage IV, PSA 744, Gleason 8 with the above-mentioned metastases.

I also am more concerned with quality of life over longevity. I feel that everyone should have the option for "Death With Dignity," even though I don't know if I could ever go through with such a thing. But I wish that I had that option here in Illinois, if my quality of life becomes so bad and pain and suffering become intolerable.

If you don't have metastases after 14 years, you are a very lucky man.

The best of luck to you, and God bless you,

CERICWIN

[Arcticfox44]

Hello Fred - I was also diagnosed in 2002 but from that point our treatment paths diverge because I had RP at Sloan Kettering in May 2002. PSA stayed below 0.2 until late 2007 or early 2008, when it broke about the 0.2 cut point indicating biochemical failure. I had salvage radiation at Sloan in late 2008 but it failed to knock out the cancer. I began hormones in January 2011 -- Suprefact every three months for a year -- and got a good response, with PSA dropping to virtually undetectable. I was able to take a treatment "holiday" until the end of May 2014, when on the advice of my oncologist in Cyprus, where I live, I decided to have robotic surgery to remove at least some of the cancer from left abdominal lymph nodes -- the only place where PC showed up in a choline PET scan. This worked quite well: PSA dropped from 7.0 pre-surgery to 1.0 after (July 2014) but then resumed its rise. In March 2015 I went back on hormones -- this time monthly Zoladex shots. But by November 2015 it appeared that Zoladex alone was no longer working, so in January 2016 I started Casodex daily along with the Zoladex monthly shots. So far this "combined androgen blockade" appears to be working with PSA staying below 2.0.

In your case, is there any possibility of Cyberknife or similar, or have you had the maximum radiation you can safely tolerate? The reason I ask it that you say there's been no spread beyond the prostate (which unlike me you still have!). Was your full-body scan a PET scan?

[JoelT]

Fred,

Welcome to our group, glad that you have joined us. Cericwin is correct when he says that stage 4 prostate cancer is by definition metastatic. Your negative scans could mean that you are not stage 4, or that the distant tumors are not large enough to be be seen on the scans. Why do you say that you are stage 4?

Please share your PSA numbers. You said that you are now castrate resistant, have you had a testosterone level done (assuming that your PSA is increasing, again please share the numbers) to be sure that you are in fact castrate. In some men their testosterone isn't at a castrate level and they are not really castrate resistant.

If you are resistant why are you thinking about Keto? You have other options. If your PSA is still low you might be an excellent candidate for Provenge. Also, Zyiga and Xtandi should be considered, they both are much better than Keto. Also, you should be on continuous ADT at this stage.

You said that you will not consider any chemotherapy type of treatment, a totally valid personal decision. I do have to ask you if you have researched the side effect profiles specific to the two chemos used in prostate cancer? No question, some men have a very hard time, however I work with many men you do report that it was not nearly as bad as they had anticipated. Side effects are a very individual thing and I always remind people that if you start a drug and it isn't working for you or if the side effects are not tolerable you can just stop. I urge that you not just reject these treatments out of hand.

Joel

[Hidden in reply to JoelT]

Hi Joel,

You and Cericwin are probably correct while the two doctors – one a urologist and another a radiologist – who gave me the idea that I was Stage 4 were wrong. I guess there is a lot of guessing taking place in this area. One other urologist who was a good friend was very honest in saying “We don’t know what we are doing” to use his exact words. Anyway, my current oncologist suggested Keto because I am CRPC but not quite qualified for either Xtandi or Zytiga because she says that I have to be metastatic to be qualified. This is my first time to hear about Provenge so I will look it up. Is a PSA of 14 low enough? That’s my latest about three weeks ago. So it looks like if it is not low enough, I don’t have any other choice but Keto for the moment. My prejudice against high-end chemo such as docetaxel and its kind comes from having been at the side of so many former parishioners, family and friends who were given chemo and seeing them suffer so much from side effects. Often, the question in my mind and that of others was whether it was worth it at all. I had a neighbor friend a couple of years ago who graduated to chemotherapy for his PCa treatment and I watched him go so quickly. I have two siblings who are both medical professionals both retired. My older brother is a cardiologist and my younger sister is a nurse. My sister in law is an anesthesiologist. When I told them that I have decided to refuse high-end chemotherapy when the time comes, I did not get any argument from any of them. They understand how I feel. Doubtless they have seen as much suffering as I have if not more so.

[JoelT in reply to Hidden]

Fred,

To qualify for Provenge, like Xtandi and Zytiga, you do need to be metastatic. You very well might be but don't know it because you have not had the correct scans.

There are a number of scans available that are a lot more sensitive than the traditional ones. If you are willing to travel you should consider these.

Joel

[Hidden in reply to JoelT]

Thanks, Joel. I did pose the question to my oncologist about the reliability of the imaging. She said she could not have an opinion and could only go by what has come. I am willing to travel as long as it is to within the continental U.S. Can you lead me to a list of places and what they do? Of course I can tell without imaging that I have no significant bone metastasis. But obviously "significant" is the key word.

[JoelT in reply to Hidden]

I am going to guess that you have received the most common bone scan, which has been around for decades. It is known as the T99 or Technetium 99 bone scan.

Generally, it has decent accuracy overall, however a more recently developed scan is known as the F18 (Sodium Fluoride) PET Bone Scan. It does take longer to administer than the T99, is more expensive and gives the patient a little more radiation exposure.

For men like you who are in a place in your cancer journey where finding remote cancer is important the F18 PET Bone Scan may be something you want to consider.

FYI - Dr Snuffy Myers has made a video describing the difference in the accuracy between these two Bone Scans.– Confusing Prostate Cancer Terms– (5 minutes into the video).

You will need to do some research into finding where you can get a F18 PET/Bone Scan in your area. You can search with your zip code here. Things do change regularly, so I recommend that you call the facilities that might interest you and confirm that tey are still offering the scan. You can also call the National Oncologic PET Registry (NOPR) at 800-227-5463, ext. 4859 and ask for Joy Brown, administrator. She can probably help you.

Medicare usually pays for the F18 PET Scan. Private insurance pays sometimes and sometimes it doesn’t, so you will need to ask your insurance company before you proceed.

The other more accurate scan that is available is at the Mayo Clinic in Rochester Minn. Contact Dr. Eugene Kwon at: [e-mail].

Given your situation you should find out if you are metastatic so that the many existing, FDA approved treatment options will become available for you.

There are some others, but they are in clinical trials and probably not worth you effort given that you do have alternatives available.

Joel

[Hidden in reply to JoelT]

A million thanks for leading me on the right track, Joel. You were absolutely right about the type of bone scan I had, which was Technetium 99m. I'm glad my records are intact.The scan was done in Zephyrhills at the Florida Medical Clinic Radiology Dept. on December 8, 2015. I have great news. I don’t have to travel very far to get F18 Pet bone scan. I found this site in Orlando, which is only two and half driving hours from me. Moreover, Medicare will pay for the test. Here is the url for the site:

triadisotopes.com/downloads....

I can’t wait to get in touch with the outfit.

[JoelT in reply to Hidden]

Glad to be of service. Let us know what happens.

Joel

[Hidden in reply to JoelT]

Hi Joel. My oncologist did not encourage me to do a PET Scan which is readily available. Her reason is that the body scan that I had earlier to look for metastasis did not even show any lymph involvement which she says is the first red flag that calls for more advanced imaging. Besides, I don't have any bone pain of any kind. The one thing that we are dealing with is rising PSA which the combination of Zoladex and Casodex that had sustained me for 13 years is no longer effective. As I said in my earlier post, I tried low dose ketoconazole (200 mg three times a day) but after a month of it, my PSA continued to rise. It was 12 when I started and went up to 17. So I went along with my onco's suggestion to go with the high dose of 400 mg 3 times a day and nothing else. After four weeks at that dosage, my PSA is down to 12. We both discussed adding a steroid and we decided to wait and see. My question to everybody is: how long does it take for ketoconazole to lower psa to an acceptable nadir. I think one of our friends said that he obtained a nadir PSA of 6. So far I am happy with the high dose ketoconazole mainly because I have no side effects whatsoever. And if I get my PSA down to single digits, that will be an achievement of sorts. At least it gives me more quality time while waiting the thing out.

[GAdrummer]

High dose ketoconazole comes with prednisone which did and continues to do a number on my husband's skin, making it easily torn and bruised three years after stopping treatment. It's main advantage is that it is relatively cheap and available. Compared to the other forms of ADT, it resulted in the highest nadir and gave only 6 months of control. Extandi gave him the lowest nadir and 2.5 years of control. Each man's tumors are different. Best wishes in your struggle to decide.

[herb1]

Why refuse docetaxel without 'testing the waters' to see how bad the side effects are FOR YOU?

And, I thought Xtandi and/or Zytiga were perfect for someone who has become castrate resistant? And yet Keto may be fine and may work great for you.

Good luck. Don't rush to the other side

herb s

[Hidden in reply to herb1]

Hi Herb. I am half hoping that Joel is right that I am metastatic and not know it. That way I can skip keto and go on to Xtandi or Zytiga, the earlier the better. No, I am not rushing to the other side. I will stay on this side as long as I can continue enjoying it. I love life and not only do I proclaim it. I sing it. I am also an entertainer and the following is part of my repertoire. Enjoy.

youtube.com/watch?v=Ib5qe1B...(Not working as expected?)

Cheers,

Fred

[JoelT]

Fred,

I Love Life, what a great performance, made even more on target given who we are and what we deal with every day. My dear friend keep singing for yourself and for all of us.

BRAVO

Joel

[Hidden in reply to JoelT]

I hope you recognized the performer Joe Finney, an Irish tenor regular at the Lawrence Welk Show. I sing that same song as my part of my concert repertoire albeit in a slightly lower range since I am a high baritone. At choir, we jokingly call my voice range bisectional (stress on the second syllable.) Don't mind me. I happen to share the old Readers Digest motto "Laughter is the best medicine."

BTW, so you know what I look like and how I sound, here is my latest solo performance at the Atonement Lutheran Church of Wesley Chapel, Florida a few Sunday ago. The lyrics are a take-off from Psalm 23 verse 4. Enjoy!

youtube.com/watch?v=3QuCtK9...(Not working as expected?)