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Advanced Prostate Cancer

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Frigataflyer profile image
24 Replies

Hola Fellow Travelers

I am a 76 year old Canadian living in Mexico. In May of last year my PSA registered 128 ng/mL The four physicians that I consulted all assured me that I had prostate cancer which had almost certainly metastasized. My gammagram was negative for bone metastasis and since I have no medical insurance, my first response was to assume the physicians were correct and to try a variety of natural interventions before traveling down the conventional path. So, to the alarm of my family, I began a 20 day water fast. By Day 15, I felt very good and was sure I was “winning” and that I should continue water fasting. To justify this to friends and, now terrified relatives, I took another PSA, in the expectation that it would be decreased and that a falling trend would justify continued fasting. Big surprise! Six weeks after my original test and following 15 days of strict water fasting, my PSA was 145ng/dl. And to make matters worse the increase took place in context of a stratospheric Vitamin D level of 297ng/dl and a year of ketogenic dieting.

I ceased Vit D3 and ramped up Vit K2 but continued with a Keto diet and spent the summer harvesting herbs and, in my kitchen lab, making tinctures of mistletoe and Jamaican Ball Moss, oil extracts of cannabis and (unsuccessfully IMHO) Liposomal Vit C. PSA continued to climb.

In August I Switched to plant based diet and added Cannabis oil Suppositories to my regimen. An advantage of suppositories is that they are touted as being psychoactively inert, but I abandoned them 6 weeks later because an N=1 experiment found that they failed to produce any THC/CBD (or derivatives) in the blood of the subject ( see extractcrafter.com/2017/05/.... This was a real bummer.

In December with a continually rising PSA (now 174ng/mL) , I had a biopsy (Gleason 9) and started on Casodex (50mg). By mid January my PSA had dropped to 33 and I stopped Casodex and started on Lupron. After the first month post Lupron my PSA went to 2.7 and my Testosterone to 17 ng/dL ( ref 250 -1100ng/dL). A month later my PSA halved to 1.3 and my Testosterone, now being measured by a more sensitive test for hypogonadal men, dropped to 6 ng/dl.

So the Lupron seems to be doing its job and, as much as I hate the loss of the internal milieu that is a part “me” I would like to keep it working long as long as possible before becoming castrate resistant and having to escalate to drugs, with more side effects and bigger sticker prices.

In this regard, i am really interested in BAT or initially holidaying from Lupron and allowing my PSA to rise before knocking it down again with another LUPRON shot. I am not sure whether, I am a candidate for either approaches, but, i want to run the BAT/ADT Holiday approach by this group so I can be best informed when I see my conservative and not very communicative urologist in Mexico.

I am seeking the opinion of this group about what further tests/ information I need to make my own informed decision about how to proceed. Any thoughts would be most appreciated!

Best Regards

David

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Frigataflyer
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24 Replies
BarronS profile image
BarronS

I've never seen any study that indicates intermittent ADT is superior to continuous ADT in the case of metastatic prostate cancer.

I think you are going to have to give more information about where the mets have spread. Are they in the bones and lymphs? Just in the bones? Have they invaded the lungs?

Also, how many mets do you currently have? There is a huge survival benefit in started zytiga or chemo early in the case of higher burden disease.

Frigataflyer profile image
Frigataflyer in reply toBarronS

I had a clear bone scan in June and have not further investigated mets. Guess, i will have to do that soon

GP24 profile image
GP24

I have read a case study: the patient responded very well and decided to stop ADT. After the PSA value went up again, he no longer responded that well to ADT.

This study suggests a 20% greater risk of death of intermittent ADT for metastatic patients is likely:

nejm.org/doi/full/10.1056/N...

Frigataflyer profile image
Frigataflyer in reply toGP24

Thank you for info, I was hoping to jump the gun and Save money and reduce the ADT side effects.

Viva Mexico ! Great results since youve started treatments .. Still, you want that Psa lower and to keep it down for years before you think about a break . I’m no Dr .. I do much alternative meds and nutrients also . I’m just lucky to have the jaws of APC off of my ass for now. That doesn’t mean that the shark is dead . It can circle for years in wait. A pleasant thought..

Buenas suerte !

Frigataflyer profile image
Frigataflyer in reply to

Gracias! The consensus certainly is that it was premature to think about taking an ADT holiday.

in reply toFrigataflyer

F the consensus.do what you want ..each to,their own . I’m afraid to take an adt break and I’ve been clear over 3 yrs. I fear the brutality of APC more than death itself. But that’s just me....

curious-mind1 profile image
curious-mind1

Based on what me and my dad have learned about advanced prostate cancer, it would be best if you attack the cancer most aggressively right now, in the beginning of your treatement. The idea is, the more cancer cells you kill quickly, the longer your remission would be, and it'll be longer before any of the remaining cells mutate.

In that light, consider adding Avodart and at least either: Zytiga or Xtandi to your Lupron. It's also a good idea to switch your care if possible, to a prostate cancer oncologist specialist, as they know more about the latest treatments.

BEst,

Arto

Frigataflyer profile image
Frigataflyer in reply tocurious-mind1

Thank you Curious Mind, After reading an article by Charles Maack (Triple Hormonal Blockade (ADT3): A Patient’s Perspective, Oncogen, 2019; 2(1): 6) i have been considering going in the direction, that you suggest. Maack writes:

Triple-hormonal blockade/androgen deprivation therapy (ADT3) includes the prescribing of a GnRH agonist or antagonist (I use LHRH and GnRH in the following but in reality, either is appropriate for agonists) to shut down testicular testosterone production; an antiandrogen to block testosterone access to the cancer cell nucleus; and a 5Alpha Reductase (5AR) inhibitor to prevent any testosterone that might access the cancer cell nucleus from converting to dihydrotestosterone/DHT. DHT is a 5 times more powerful stimulant than testosterone to prostate cancer cell growth and proliferation.

john205 profile image
john205

It’s important to know the extent of your metastases. If it is “high burden” meaning more than 4 bone sites, then there is strong evidence that early chemotherapy is effective. If it is limited, then chemo is less effective but then there may be a role for radiation. I agree, it would be best to have an evaluation with an oncologist with prostate cancer specialty. Things are changing rapidly and they will be up to date. As far as BAT, the evidence is inconclusive. Also, While using diet and supplements gives you control of your health, the evidence there tends to be for prevention in populations, not treatment of an individual with established cancer. Diet and supplements may reduce statistical risk, but once there is cancer, the risk is 100%, regardless of what you do. You should pursue direct treatment of prostate cancer. You can’t prevent it any more. Are you still a Canadian citizen? Do you still have access to the Canadian healthcare system. With the expense of cancer treatment, you may need to consider that.

Frigataflyer profile image
Frigataflyer in reply tojohn205

Hola John205, thanks for your reply, i intend to follow “direct treatment” but in parallel, I am trying to eat a very low protein, zero refined sugar, low glycemic fruit diet and I practice Buteyko Breathing ( the poor man’s answer to Hyperbaric oxygen?) etc. Etc. With regard to returning to Canada see my reply to J-O-H-N below.

Saludos

David

in reply toFrigataflyer

You’re doing a lot of good stuff. I’ve got to check out Buteyko..Thanks

j-o-h-n profile image
j-o-h-n

Horace Greeley said "go west young man". J-o-h-n says "go north young man". To the USA's northern 51st state a/k/a Canada 🍁 for better treatment.

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 04/07/2019 5:00 PM EDT

Frigataflyer profile image
Frigataflyer in reply toj-o-h-n

When I moved to Mexico 12 years ago, it was for economic and lifestyle reasons. As the recently minted Mexican T-shirts say “ ....you are on the fun side of the wall” and It would be a shock for me to return to living in the heavier North of the Border culture. That said, Economics, might force me to return one day. Oh well, I still know how a snow shovel works.

j-o-h-n profile image
j-o-h-n in reply toFrigataflyer

Only suggested it because of Socialized Meds in Canada. My cardiologist has a sign on his wall "DON'T SHOVEL SNOW". One day I asked him if I wanted to off myself would he help me with meds. He got really upset and said I should see a shrink. As I left the office I say "never mind doc... if I want to off myself... all I had to do is shovel snow".

So if you're gonna go back to the cold side of the wall.... "DON'T SHOVEL SNOW".

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 04/08/2019 12:35 PM DST

Frigataflyer profile image
Frigataflyer in reply toj-o-h-n

Or go back and shovel like hell...a heart attack is probably cheaper, and quicker.

j-o-h-n profile image
j-o-h-n in reply toFrigataflyer

You know you got a point there....

youtube.com/watch?v=z5y6L6H...

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 04/08/2019 12:51 PM DST

Pleroma profile image
Pleroma

Hi David,

I followed your story with interest - I am also one that believes there is some efficacy in natural forms of intervention but they need to be coupled with the conventional path when it comes to Stage 4 metastatic.

In my nephew's case (Gleason 9, mets to pelvic lymph nodes and seminal vesicles), he had been on ADT for 6 months and a rigorous plant-based diet. At which point, his PSA started to rise fast, so he added Xtandi and radiation (all at the same time). Shortly thereafter, a matter of weeks, his PSA was undetectable.

He stopped ADT completely two years later and has been PSA undetectable for the past 18 months.

All that to say, you really want your PSA to be undetectable before going "on holiday". I don't think that coveted PSA number will be achieved by Lupron alone.

All the best for you on your journey. I really expected your 15-day water fast to weaken the tumors. I have a hunch that once the prostate tumor takes on the "aggressive" stage, all the dietary protocols start to lose their effectiveness to suppress.

For your interest, Mayo Clinic Rochester uses choline as the contrast in their Choline-11 PET scans (Glucose in their regular PET scans).

Choline is readily absorbed by the prostate tumors - but it is also a necessary nutrient found highest in meats, fish, eggs, dairy, peanuts and even many green vegetables to some degree.

Basically, my research tells me that we are feeding the tumors irrespective of the diet we choose to eat. But I would still steer clear of all processed food, alcohol, tobacco, caffeine. You want your body to be in the best possible health to combat the side-effects of the cancer and the treatments.

Frigataflyer profile image
Frigataflyer in reply toPleroma

Hola Pleroma

Thanks for answering my post. Last year when I started out on this life changing dance, I got a DVD set featuring a number of alternate treatment authorities. Half of them advocated the use of some substance (pork pancreas, cannabis, IV Vit C, Ozone, coffee enemas etc.) and the other half advocated spiritual practices. I quickly dodged the spiritual part and concentrated on the physical. It is coming up on a year now, since I started and I have long since abandoned pork pancreas pills and cannabis suppositories, but I just ordered “Radical Remission: Surviving Cancer Against All Odds”. By Kelly Turner PhD and I intend to spend a couple of months practicing whatever spiritual practices seem to have worked for others. I will do this in the context of, following the preventative nutrition/supplement approach and what seems to be the appropriate standard of care.

Thanks again

David

Frigataflyer profile image
Frigataflyer

Thanks. Hope it doesn’t come to that.

ctarleton profile image
ctarleton

The originator of this article/list in Mexico might be able to give you some assistance or other ideas for a non-Mexican citizen seeking medical care, or other personal medical insurance, or more expensive drugs in Mexico. (He has an estimate for Zytiga on his list, but not Xtandi.) Maybe drop him a friendly email?

ventanasmexico.com/new-page-4

Good Luck!

Charles

Frigataflyer profile image
Frigataflyer

Ctarleton thank you, this is a good resource, I am going to get in touch with him.

monte1111 profile image
monte1111

Get a snowblower. If you think you can out think cancer, I think you are wrong. Do the cancer drugs. And all the other stuff if it makes you feel like you are in control and doing something. If I was young I would do all of the diet stuff, etc. But I'm not. I'd be very, very happy to live to the age you are now. Hurry, before they build the wall. Enjoy.

Four months ago the biopsy revealed a Gleason 9 with a 174 PSA. I would be surprised if you did not have distant metastatic lesions. Comparing Chuck Maack’s treatment plan with an understanding that his initial PSA was 6.3 in 1992 and the highest, only in the last eight months, as his PSA approached 2, will get you into a negative situation quickly.

Note that in August 2018 the appearance of his first local metastatic lesion: “1cm at the location of where my urethra was reattached to my bladder neck – the anastomosis – way back in 1992 when my prostate gland was removed.”

See a Medical Oncologist that specializes only in genitourologic cancers and quit hoping that Maack’s treatment plan is for you.

I wish you the best.

GD

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