Am I nuts? Hoping to find a cure....

[Hairlessness]

Hello All, I've followed many of the posts on this site for a few months now, but I've been somewhat reluctant to participate. Some of this reluctance comes from dealing with the emotions of so many men and their families being effected by this insidious cancer and my own situation. Some of my reluctance is because I am stubbornly not accepting what I've been told is an incurable state and my fear that I might find some disagreement in my choices.

June of last year I was diagnosed with stage IV prostate cancer with metastatic to several areas including 50% of liver. PSA 680, Gleason 9. Under went 6 months of chemo with Taxotere including Predisone, Dexamethadon, Neulasta, also have been on Lurpon for 9 months now. PSA has dropped to 0.04 with no mets showing on new CT scan. Oncologist wanted to have me simply go to a watch or surveillance status and get a PSA once every 3 months while staying on Lupron the rest of my live. He was very resistant with many of my ideas to improve my quality of live, and refused to provide a refer me to my new oncologist.

Here is where I am curious to find out if there are others that have chosen anything like my new path of treatment.

In January I found an oncologist In Seattle at Life Spring that was first an immunologist. His treatment is focused on boosting the immune system to fight the cancer. Maybe a better term would be to control the cancer. He has placed me on the immune agent Interferon self injections 3 times a week and Zometa infusions once a month. I have changed my diet to drop all dairy, and increased organic veggies. I've also added several supplements to my daily intake, along with pushing myself to excise more. So far my PSA which I'm checking every 30 days is stable but the Lupron is still effective for another month or so.

The new Oncologist is optimistic that the Interferon will keep the PSA stable without Lupron or other ADT treatments. So far it seems there are zero side-effects with the low-dose interferon. This MO says if we see the PSA climb in the future we can always return to Lupron since I am not resistant to the drug. Worse case he thinks I could return to a low-dose chemo treatment.

Prior to making the switch I spoke to 3 different patients that have remained on Interferon for several years and their quality of life is much better than mine has been on hormone therapy. One woman I spoke to that went through a similar treatment thinks she has been cured of breast cancer with brain mets. I'm hopeful that new research in fighting cancer and tumors with other natural immune agents will soon provide a cure.

I'd be interested in any feedback to hear if I'm taking too big a risk with this new treatment path. I am anxious to learn everything possible to keep moving forward.

Thank you Dave

[gusgold]

I saw Dr. Kwon at the Mayo Clinic a year ago...he is an immunologist and told me at the time all the immune therapies were worthless including interferon, so who knows. They have been looking at interferon since 2008 and the paper below seems to support what kwon is saying.

Gus

ar.iiarjournals.org/content...

[FCoffey]

You are not nuts. It is your body, your life, and your choice.

Apparently you value quality of life. There is nothing wrong with that - it is a good thing that you know yourself and admit what you want.

Many (perhaps most) oncologists and urologists most emphatically do not value quality of life. The only measures they care about is length of life, progression-free survival, and so forth. This tendency to disregard quality of life impairment is so extreme that a former editor of a major medical journal recently made a grotesque mis-characterization of a study. He spun it to say that ADT (hormone therapy) does not cause cognitive impairment. Most men I talk to disagree, some more violently than others.

healthunlocked.com/advanced...

Here's the thing: there is no one on this earth who can tell you which choice is right for you. Only you can decide. There is no way to know which choice will lead to a long happy life, and which to early death.

There are no choices that avoid death - its when and how that matters, but IF is not in question.

Are you taking a risk? Certainly. But you also take a risk on hormone therapy. It inevitably fails, average time about 2 years, and then you have castration resistant prostate cancer, with fewer options and poor prognosis. There are risks no matter which path you take.

There are good things and bad things that can happen with EVERY treatment. If you only consider the good things, you are unlikely to make a good choice. If you only consider the bad things, ditto. A well informed decision weighs both the good and the bad. Again, only you can do the weighing.

If it helps, I also took a different path. Not the same as yours. It is my life, my path, and my choice. I am content with my decision, even though I will never know if another choice would have given me longer life. I cherish the time and quality of life I have experienced, and hope for more.

[Hidden in reply to FCoffey]

Well stated.

[Hidden in reply to FCoffey]

Beautiful words.. Thanks!

[John-carp]

Hello

As it has been said you do what is right for you and there are no wrong answers. You may want to get a concult from Seattle cancer care. They have some great minds and prospective and they have EQ. I did Lipton for two years and in a holiday. Yes Lupron is a drag but for me I have been managed to manage the side effects with acupuncture exercise and diet. If you would like to chat off line let me know. Best to you.

[Magnus1964]

Going to doctors is a crap-shoot. I went to Johns Hopkins after surgery they did not recommend radiation immediately. At the same time others I have talked to said they went to the Mayo Clinic and were given radiation after surgery. So who knows. Are these places using different protocols to find the right combination of treatments? Are we all lab rats in giant scheme of medicine?

I have been playing this game for a long time (25 years) and I have fired a few doctors along the way. My advise, if something does not feel right go to another doctor.

[Grumpyswife in reply to Magnus1964]

Like my husband likes to say, they are practicing medicine on him.

[Hidden in reply to Magnus1964]

Magnificent! You’re fired! You’re inspiring hope and strength in me Thanks

[adlerman]

As long as removal of the prostate remains the main treatment I would not worry about going against the grain in checking out new treatments. RP is like AA imo- lots of failures. Cryosurgery is underused- often it's not even listed as a treatment. I had urologists tell me I'd have to find a new Urologist if i had cryotherapy. For 15 years I haven't needed one for anything more than a PSA.

[Hidden in reply to adlerman]

HIFU (heat rather than cold) is a much more precise, and yes focused, therapy compared to cryosurgery. I'm an engineer, not a doctor, but if you research these you will probably concur. There's a reason why cryosurgery is falling out of favor.

[adlerman in reply to Hidden]

It was never in favor because urologists usually weren't the lead Doctor on the procedure. The MD who did mine was a Radiologist who devised the equipment and the procedure- he told me the urologist assisting him received a larger insurance payment than he did- many medical people are ridgid thinkers-imo.

My son's wife had pancreatic cancer and he took her to LA for heat treatment- didn't help her.

[Hidden in reply to adlerman]

Sorry to hear that. Pancreatic cancer is very nasty.

[Hidden in reply to adlerman]

Sorry to hear that.

[Hidden in reply to adlerman]

That’s great!

[MelaniePaul]

Hi dave.

My husband and I were very interested in your post. My husband Paul has extensive mets to the liver and to the bones and our oncologist here in Dublin said that Chemo was his only option at this stage. Thankfully Paul is tolerating the Chemo well. But of course we are always thinking about what to do if it stops working one day or if he can no longer take it. Our oncologist said that immune therapy was out of the question with Paul's prognosis. I am not so sure about this, though. Wouldn't be any harm in boosting the immune system, would it?

Wishing you good luck with your choices.

Mel and Paul.

[Hairlessness in reply to MelaniePaul]

Hello Melanie

Well, I'm hopeful that an adjunct treatment to the standard protocol may extent live for myself with far less side-effects. If i must return to chemo I'm staying with the immune therapy.

Sorry to hear that your husband Paul is also dealing with this insidious disease.

First let me say that i am by no measure qualified to make any recommendations for treatment. There are others on this media more qualified. Also, I've been very lucky with treatments, after being diagnosed last June and given 2 months to live. I'm glad i put my life into those doctors hands and accepted a very aggressive treatment. everything that was thrown at me worked and my cancer did not become resistant. Sounds like Paul is in a similar stage. The chemo and other drugs cleared all my mets and lowered my PSA to 0.04. After 6 months of chemo and hormone treatment the oncologist felt that in his professional opinion I might go on another 4-5 years.

After that meeting i decided to look for a treatment that MIGHT provide me with more hope. I'm now 3 months into treatment with 2 doctors, an immune-oncologist and a natural-pathetic doctor. Both are very advanced in their fields. Every 4 weeks they add additional agents or supplements to my regiment. So far my PSA is still virtually undetectable. At 62 years old, these doctors seem to think I could go on another 20 years.

Most of what i am doing can not do any harm (not real sure about Zometa long term). In fact while being around family that was sick from flues and colds my treatment has elevated my tolerance to viruses. My overall health and physical strength is also returning. Who knows, maybe if immune therapy was in place during chemo there would have been less risk of virus and infection during the nadir period. 2 months into chemo pneumonia nearly did me in (7 days in the hospital).

It's unfortunate that you have to become your best advocate when it comes to your treatments. No One has a cure that I am aware. I do not have any specific research to direct you to but you might investigate what Dr Ronald Levy at Stanford University is doing. There is also some recent encouraging information about immune inhibitors PD-1 and CTLA-4. Some of the big pharma companies like Bristol-Myers Squibb are getting on the immune oncology wagon. Unfortunately there isn't much or enough research specifically directed to prostate cancer, and without major studies our FDA will not or can not bring these treatments forward as acceptable for most oncologists to use as standard treatments in the US. For treatment ideas in your area i have no ideas. I could provide more specific details about my current treatments but I'm not sure how helpful that would be for you as we are all different.

Best of luck to you and your husband Paul - fight hard and enjoy life. Dave