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Active Surveillence & Low Dose Naltrexone (LDN)

Swingshiftworker
Posts: 657
Joined: Mar 2010

I've been lurking here for awhile and thought it would be useful to post info on my situation. FWIW, I'm not looking for condolences or advice. I'm just posting this in case it will be of use or value to anyone who reads it.

I was diagnosed w/prostate cancer following a biopsy on 1/28/10. I'm 59 and the diagnostic stats are: Stage T1c, 1 core out of 10 positive (only 0.6mm involved), PSA 4.5 (1/7/10),PSA 3.4 (3/21/08) and PSA 2.9 (10/12/06), Gleason 3-3 and Prostate Volumne 42cc.

I was not traumatized by the diagnosis. It concerned me, of course, but after I read the literature (and I'm still reading), I'm comfortable with the situation. I don't like it, but I'm not going to die tomorrow, there are "cures" for the disease and I have time to make choices about what to do next.

So, I've already decided to engage in "active surveillance" and am determined NOT to let the "fear" of the unknown effects or course of the cancer affect my quality of life. I am going to continue living my life as I always do -- enjoying it to the fullest -- and will make whatever accommodations I HAVE to make and take whatever actions I HAVE to take in order to address the cancer when the time comes.

An important factor my decision to opt for "active surveillance" is the fact that I am still sexually active and have no interest at this time in subjecting myself to the "risk" of becoming impotent (even if temporary) for up to 2 years and incontinent (having to wear a diaper for up to a year or more) or risk a shortened penis following robotic surgery, unless it is ABSOLUTELY necessary (as in, my life depends on doing it NOW) to do so. It's not absolutely necessary yet and may never be.

Actually, given what I've read so far, I already know that I'd opt for brachytherapy over surgery because of it's less damaging "side" effects and, if it is necessary, I will go that route, as long as I'm still eligible to do so when the time comes. Both are covered under by my HMO - Kaiser Permanente in CA -- and will cost me nothing. Between surgery and EBRT, the decision isn't as clear given the potentially more damaging (than brachytherapy) side effects of EBRT.

However, I've also read that proton beam therapy is even better than brachytherapy in limiting the risk of impotence and incontinence, but that is not covered by Kaiser and I would have to pay for the treatment out of pocket. I have the money to do that, if need be, and will pay for it out of pocket,if I decide that that is the way to go. Two additional advantages of "active surveillance" will be the possibility of the reduction in the cost of proton therapy and the possibility of the discovery of alternative treatments in that time.

In the meantime, what to do?

Well, I've read the literature and recommendations about diet and exercise. There's no "proof" that improving your diet or exercising more will "cure" or "abate" any cancer, but it certainly can't hurt. So, I'm going to eat as well as I can. I eat pretty well and exercise already, but will try to exercise more and reduce even more my intake of red meat, fat, sugar and fat and increase my intake of fish, soy products, fruit and veggies.

A urologist also recommended that I eliminate alcohol & caffeine from my diet because they are diuretics and because alcohol can be damaging to the bladder and to "drink less" generally (which I thought was an impractical suggestion). I usually drink a couple of cans of Bud and Coke a day and I can easily stop drinking them. I also don't drink coffee or tea very much and can eliminate them, but there's no way that I'm going to give up fine wines, champagne, single malt scotch or martinis (all of which I drink in moderation) Giving up Buds, Cokes, coffee and tea will have to be enough -- at least until someone proves to me that drinking ANY alcohol will kill me (or exacerbate my cancer) if I don't stop immediately. I don't think anyone will ever be able to do that and I can live with whatever risk my remaining consumption of alcohol presents for the future.

Beyond diet, after reading about various alternative treatment approaches, I've decided to take low dose naltrexone (LDN) and conduct my on "clinical trial" to see if it is of any benefit in reducing my PSA and suppressing the cancer over time. LDN supposedly strengthens the immune system and this has reportedly contributed to treatment of a variety of diseases, including cancer.

Of course, there is no "proof" that LDN helps at all in treating any disease and all of the "evidence" is merely anecdotal. However, there is enough anecdotal evidence out there to suggest that it "may" help and, since it is not costly and has no "major" side effects, I'm willing to give it a try. My urologist at Kaiser is unwilling to prescribe it for me, which is no surprise, but I found a naturopathic physician in Seattle who will. I'm going to use my PSA test in April as a base line and will then begin a regular regimen of LDN and will measure my PSA over time to see if has any effect on the upward trend in that number for me. I'm hoping for a stabilization (and maybe a small reduction) in the PSA level and no increase in growth of the cancer as evidence by the follow-up biopsy due in Feb 2011. I will post follow-up reports here.

I haven't seen any other threads on LDN on this forum. So, if anyone else is taking LDN or has taken it in the past, please share your experiences here. Thanks!

Trew
Posts: 892
Joined: Jan 2010

I was talking with a guy at Loma Linda U who was getting proton therapy. HI s insurance also tune dhim down, but he also was sexually active and had the same concerns you did regarding surgery so he was paying for the proton therapy himself. He said for the cost of a good car he was getting the treatment he wanted and was satisfied with that thought.

Not having to wear pads and maintaining his sexual function were wortha lot to him. I would suggest you contact a good center tha toffers proton therapy and see if you can't make some kind of payment arrangement with them.

And keep after your insurace- nag, nag, nag!

Nice outlook, BTW. And I only ofter my opinion FWIW.

I know a few thousnds would have been worth it to me to preserve what is gone.

Swingshiftworker
Posts: 657
Joined: Mar 2010

Thanks. I think I have an open and realistic outlook about the problem that works for me.

FYI, regarding proton therapy, I've been in touch w/Loma Linda (haven't gotten back to me yet) and the U of Florida. U of Florida got right back to me and is sending me a package including Mackini's book for free! LOL!!! Guess there's enough profit int he procedure to do that. Can't wait to read it.

No way Kaiser is going to pay for proton therapy. Asked my urologist if he'd refer me out to do that,if necessary, and he said no, despite the lesser side effects, because there's no evidence that it's better than other treatment in curing PCa. End of story.

Kaiser has their own robotic surgeons. Met one who only did 50. No way he's doing any surgery on me. Meeting another Kaiser surgeon who I think has more experience. Was also in contact w/a Dr. Patel in FL who supposedly has done over 3K surgeries. Wanted $36k for the procedure, but got the impression that their just interested in numbers there. Not gathering this info because I WANT to do surgery, but just to get info in case I HAVE to do surgery.

Kaiser also has a very good Oncology Radiation Center in Roseville, CA, which serves all of Northern California. They've reportedly done several thousand treatment(forget exactly how many) brachytherapy treatments to date and do about 3-5 a week. So, they're very experienced doing it and I would feel comfortable going to them if I go that route.

That said, if I have to do anything, I'm still leaning towards proton therapy and will be doing more research on that as time goes on, but my current view is that there must be something to it if so many institutions are investing SO much money building cyclotrons for proton therapy facilities. Time will tell.

hopeful and opt...
Posts: 1359
Joined: Apr 2009

go on with your life and enjoy it...if you don't have that attitute you may as well do a treatment............by the way, it's possible that your cancer is indolent, that is not likely to spread and this may be the only treatment that you require.

You can substitute Green Tea for coffee or other teas........it's suposed to have good qualities for prostate cancer.

I never heard of naltrexone (LDN)( I wonder, can you tell us more about why you think that this will help you?), but there is a drug called avodart that is currently under clinical trial for those who have low level prostate cancer......a minority of doctors prescribe this medication.......there are side effects that you probably will not want to deal with...........basically this drug was proved successful for patients who have not yet been diagnosed

Ira

Active Surveillance
Diagnosed 3/09 for 66 birthday
By chance doc found a bump in the cavity , not on the prostate(which turned out to be non cancerous)
PSA's had been at 2.26/2.27 for a few years
Biopsy 3/09 Gleason 3+3=6 2 of 12 cores positive- 5 percent involvement in each
second opinion john hopkins
4/09 MRI with spectroscopy, no nodule involvement, staged t1
Aureon molecular test on biopsy, 97 percent chance will not progressin next 8 years
PSA Jan 2.2, JUly 2.5, November 2.6, February 2010 2.0

Swingshiftworker
Posts: 657
Joined: Mar 2010

Naltrexone in it's original form (50 mg) was a drug that was approved for use in the treatment of opiate addiction.

However, a physician named Dr. Bihari discovered that the administration of naltrexone in low doses (1.5-4.5mg) helped alleviate some of the effects of various diseases including HIV & cancer.

Here's a link to Dr. Bihari's website that will give you an overview of the topic: http://www.lowdosenaltrexone.org/#What_is_low_dose_naltrexone.

Here's a link to a discussion on an affiliated website of LDN & Cancer: http://www.ldninfo.org/ldn_and_cancer.htm.

And, here's a list of LDN related resources that I used to find my source for LDN: http://www.ldners.org/resources.htm#Pharmacies.

Hope you (and others) find this info useful.

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

You have a good outluck on it all. Yes sex is important to men and each person has to decide for themselves. Just FYI, talk to some guys that are 5+ years post Proton. My dad had proton did well but there are side effects. He did loose his ability for erections about 3 years post proton and others have also. I read the Proton Bob book which is informative and of course biased. He tells of one deciding factor being His brothers open surgery with the Prostate. Just remember its not all 'blood and guts' as Bob describes in his book. Surgery has improved greatly. I did look at Proton (Insurance denied) Cost at Florida was LOTS more then out at Loma Linda.

Best wishes on your journey.

Larry age 55

bdhilton
Posts: 759
Joined: Jan 2010

Tomorrow will be 4 weeks since I had the open procedure. I am hiking about 8 miles a day (at 4mph) now. I have “color” in my face from the sun and my health. Not working out with weights yet (I start tomorrow) Hey I do not mind saying I am looking and feeling great ( I am looking and feeling great but I am preparing myself for radiation treatments…kind of like a oxymoron …this prostate cancer is some thing)

However, from what I heard I looked pretty scary for several days after surgery (I had a 45 gram prostate). I loss over a liter of blood (no transfusion)…My wife said I looked like an “alien” and I had a neighbor that did not recognize me about 4 days after surgery while I walked down the street (with my cath bag)….So yes I can see why this scared “Proton Bob” …but hey you had a major surgery and that is why you need to be I good health to have it….

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

I think you're taking the right tack. Like you, I've been lurking for several days as I was diagnosed last Tuesday. PSA @ 4.3, elevated from 3.1 in 2008 and a biopsy showed 1 of 12 cores positive with a 15% volume and a Gleason score of 3+3. Have spent a lot of time reading several books, looking at information on the internet, and reading posts in several discussion groups. At 59 I am unhappy with potential downsides of surgery or radiation although I've scheduled appointments with a nearby Cyberknife center and also at Loma Linda to investigate the proton therapy option. Going back through years of PSA tests from my annual physicals I've calculted a PSA doubling factor of over 9 years and a PSA density of .092.

One thing that strikes me from the literature that I've read is that there really isn't much difference in long term survival rates between surgery, radiation, and active watching. The other thing that struck me from the studies and literature that I've seen so far is that there is seldom a "cure." In both surgery and radiation there is a high percentage of recurring prostate cancer 10 or more years after treatment. For those who pursue radiation treatment, other cancers such as colon or rectal or penile develop several years later which I suspect may have been a result of the radiation.

One thing I learned was that the prostate cancer cell doubling time is 475 days and that taking a hormone blocking therapy for a year and a half should kill the cells through their natural "suicide" gene. Taking a drug that inhibits testosterone to the cancer cells along with a diet and lifestyle change to me, at least, makes sense.

Regarding diet, you may wish to read Jane Plant's book about prostate cancer and diet which is available from Amazon.com. I actually met her several years ago and was impressed by her approach to resolving her breast cancer where she was given only months to live after a double masectomy. She did a study of cancer rates worldwide and discovered that women in China had a hundred times fewer frequency of breast cancer than those in Western cultures. The biggest factor in the diet was dairy products. She eliminated dairy completely from her diet and her cancers disappeared in 6 weeks. Thousands of similar cases have reported similar success and she has applied these principles to prostate cancer as well. While it may not be for everyone, it is worth a read. Other key parts of her diet include elimination of red meat and other sources of animal fat.

I hope your plan works for you and I've already started doing some research on the drug you mentioned.

I plan to meet with a cancer nutritionist as well as my urologist, radioligist, oncologist, and whoever else makes sense.

Best if luck.

Swingshiftworker
Posts: 657
Joined: Mar 2010

Just took a blood test for a new PSA on 3/31 and started taking LDN the same day.

No side effects (sleeplessness or restlessness) yet -- sleeping soundly through the night. Will take a followup PSA on 6/30 and, if it has "any" effect, hopefully will see no increase in the numbers. Will post followup PSA results as I get them.

cabiggs's picture
cabiggs
Posts: 2
Joined: Mar 2010

I have taken LDN for over six months. It has helped me with pain and stiffness in the joints. It is inexpensive and life is better with it.
I am a prostate cancer patient, stage 4 with bone metastasis, and I have little to no pain.
I am taking a protocol, which includes LDN, developed by Sir Arnold Takemoto. He has run a successful cancer clinic for those that traditional medicine did not work for. He to my knowledge has never lost a patient who stayed on his protocol in the last 25 years. My PSA was 230, and after one month on his protocols, it is 22. He is in Scottsdale Arizona. His number is 480 922-9235.
God Bless you,
Chod

Swingshiftworker
Posts: 657
Joined: Mar 2010

Glad to hear someone else is "experimenting" w/LDN and that it's helping you!

I'm on 5mg daily of LDN now. Don't have any of the typical symptoms of sleeplessness or restlessness that are commonly reported as side effects of the medication. It actually makes me sleep more soundly. This is probably because Dr. Mullen (my Naturopathic Doctor (ND)at the Seattle Wellness Center) is adding certain herbal medications to counteract the typical side effects of LDN. I won't know for another couple of months if the LDN is effective in reducing my PSA or not, until I am tested again in June.

Unfortunately, my PSA spiked to 29.7 on 3/31 following the PSA test and biopsy 2 months earlier. My urologist wasn't alarmed because PSA normally spikes after a biopsy and he felt it wasn't yet long enough to be worried about it. On the other hand, I was SHOCKED and it has concerned me, but there's nothing I can do about it yet. In the meantime, I'm going to be taking the LDN (which will hopefully bring the PSA level back down) and am also taking saw palmetto and pomegranate extract, in order to control urinary function and to reduce prostate size, respectively, both of which can also contribute to PSA reduction.

Semen production has returned since stopping FloMax and urinary function seems to be well controlled w/saw palmetto extract. Won't know if the pomegranate extract helps to reduce prostate size until I have another ultrasound volume study, but it's a great anti-oxidant that should work well w/LDN in enhancing my immune system (as well as a reduction in PSA level) and hopefully will also contribute to the killing off of cancer cells and the production of "good" cells in their place.

We'll see . . .

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