First time poster. 67 years old. Diagnosed 3 weeks ago w MPC. 4-3gleeson w 10 psa. Lesions on my Spine, ribs, femur, hip, shoulder n more. A total surprise. Lupron, Zytiga n prednisone.
I have gone to a raw food diet, juicing 5 pounds of carrots a day, adding a teaspoon of baking soda to a glass of water to go more alkaline, ordered the Chris beat Cancer videos, ordered the ‘greece’ test, starting hydrotherapy , taking curcumin and vit C intravenously and starting 35% hydrogen peroxide. No meat, dairy or alcohol in 3 weeks. Too Much?
Is this proactive menu of alternative therapies just grasping at straws or doing all I can to help my seemingly hopeless metastic destiny? Scared and sad in Florida.
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Fitzbruce1
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I can’t speak to the rest of your diet, but I’d talk to someone about how much calcium you might need to keep your bones strong because of the mets to your bones. The last thing you need on top of all that you are going through is broken bones.
Fitz, I am impressed with your determination and how deep you've gotten into your treatment in a short three weeks. No, you are not hopelessly doomed. I don't know anything about some of your treatment choices but with so much at one time, how would you know what works and what doesn't. Also if there is any negative interaction between them? Lupron Zytiga and Prednisone seems right and maybe you can add Metformin and then re-check your PSA.
Metformin is a long-time use medicine of those with type 2 diabetes. It appears to be safe and has shown to help those with many health issues including cancer. I first started to supplement with metformin about 3 years ago upon the suggestion of Dr. Scholz, he stated that he takes it himself for general health. Life Extension Foundation has also highly recommended it.
I would be careful of any of the claims for the acid/alkaline stuff of diet vs. cancer; the "science" just isn't there. Also, the hydrogen peroxide could be downright dangerous. And the "Greece Test" has some problems, too, including "financial toxicity". See:
rationalwiki.org/wiki/RGCC_...
Here's what the NIH National Cancer Institute says about high dose IV vitamin C in the context of cancer.
cancer.gov/about-cancer/tre...
As for the juicing and some other things, this loosely-related article provides some more food for thought.
scienceblogs.com/insolence/...
From the medical side, with bone mets you might ask your doctor about either of the bone agents Xgeva (denosumab) or Zometa (zoledronic acid).
I, too, was diagnosed as very metastatic to many bones about 4.5 years ago. In hindsight, it was good for me have found some face-to-face support groups, whether for prostate cancer or advanced cancer in general. If I had it to do over again, I would have probably taken a more systematic approach toward maintaining higher levels of exercise, and trying to keep the weight gain to a minimum, too. What I could easily do at age 65 is now more difficult or in some cases impossible at age 70.
What a great reply you have given me. Certainly more than the 10 minutes I spent w my only visit to my oncologist. I will look at all of your links. Thanks again
Ctarleton- I looked all of your links. It is amazing how the holistic community is 180 degrees from the MDs. I was impressed that u were diagnosed 4.5 years ago. Are you doing ok? What treatments have you gone through and how do you feel about them? Your 4.5 years in this arena vs my 4 weeks is very different. Any other advise from a ‘veteran’ like you would be great!
I had LOTS of bone and lymph node mets and a PSA of 5,006 at original diagnosis. I had some lucky cancer biology and had a good response to Lupron and Zometa. PSA went quickly down to 1.0, and I got almost 2 years out of it. (In hindsight, I had a lot of (monthly) Zometa up-front during the first 2.5 years, and that was a lot of blood tests, IV "sticks", and appointments. Some men get Xgeva instead of Zometa, and there was probably not enough discussion about that up-front. I probably could have toned down the Zometa to only once every 12 weeks or even longer.) Around the 2.5 year mark I did some Provenge. Hard to know if it "took", as my PSA was up around 60-80 at the time. (In hindsight, I might have done Provenge earlier, rather than later. Especially if I had had a lesser burden of disease to start, and to perhaps give any lasting immune response longer time to work. I had some transitory problems with the blood collection process for Provenge, and also some weakness/tiredness after the infusions, but, I'd probably do it again. It is VERY expensive, so be sure to check insurance coverage first.) Also in hindsight, I spent over 2 years before getting to a prostate cancer specialist at a major institution. That delayed my getting some inherited DNA testing for any things like BRCA 1/2 or other mutations that might have informed future treatment options & decisions. I would have liked to have known about my genetic testing options sooner after initial diagnosis. Likewise, there was also a delay in learning about or getting some advance scans besides the usual NM Bone Scans and CT Scans, e.g. Axumin (fluciclovine F 18), or C-11 PET, or PSMA PET.
That might have made some treatment decision difference if I had had only a very small amount of detectable metastatic disease up-front. In my case, I got a PSMA PET as part of a clinical trial for the imaging agent, and when my PSA was back up around 80 it confirmed that I had about 10 wide spread areas "lighting up", before I went onto Xtandi about 1.5 years ago. The Xtandi worked well, bringing the PSA back down from 95 to as low as 1.0. Most recent PSA was 1.9, relatively stable.
For me, the psycho/social aspects of dealing and living with the Stage IV diagnosis have been of equal or greater significance than the purely medical aspects. Local prostate cancer support groups, and also a more intensive advance cancer support group have been a good thing for me, and also my spouse. The first year in particular was a real emotional roller coaster. These on-line support groups can help, too. Things "will" change as the treatments and drugs slowly change your body and capabilities. I am grateful for whenever I have been able to minimize ruminating about the Past, or agonizing about an unknowable future, and find ways to live as authentically and well as I can in the Present moments. Sometimes my cancer has been a sad loss and affliction, and other times it has been a clarifying opportunity - for myself and my family.
(I'd also remind folks that each of us is a Statistic of One. Those mean Overall Survival and other disease measurement statistics cannot exactly predict how any one person or his cancer biology may respond to a treatment or combination of treatments. A few will be on the unlucky/unfavorable tail end of the curve, many will fall somewhere in the middle, and some will be at the far end of the curve. One man's longer survival on just a few treatments may happen at the same time when several other men have been diagnosed later with advanced disease, and died earlier after quickly burning through more modes of treatment. )
If in doubt, be kind and loving and affectionate with your loved ones whenever you can. Allow yourself to be vulnerable and to talk/share your emotions. Big Hugs go a long ways, too. If something like hot flashes are not actually killing you, at least try to get as much mileage out of them as possible with the post menopausal ladies. Ha. Ha.
If you feel like you are having trouble between thinking about Living vs. Dying on a particular day, or while lying awake at 2:00am, go ahead and really feel those emotions for a while, and then allow yourself enter the next hour or day with a renewed sense of Living for the things that matter in this precious world. We may never be ultimately Cured of our disease, but we can so often be Healed in many ways, each and every day.
Charles- is 5006 PSA an all time record? Something like Babe Ruth’s homerun record except it is nothing like it😬. I need to do some homework to be able to understand what many of the drugs and treatments are.
Congratulations on your determination and grit these last 4+ years! You write a very inspirational post. Thanks so much. It is amazing how important this site is to me and I only found it a week ago.
There are PSAs that have been up to 10,000 and more, but they are fairly rare. My guess is that beyond a certain point, the locations and biology of whatever may be causing that much PSA is more important than the "number", itself. Some of the most dangerous types of prostate cancers actually do not express much PSA at all.
Fortunately, that's pretty rare.
If you Google "prostate cancer resources", you will find links to several of the major informational/educational sites that that have information about prostate cancer drugs and treatments.
In addition to those, you might also look for the "NCCN Guidelines for Prostate Cancer" for some clinical "standard of care" info (which often lags a couple of years or more behind the latest Clinical Trials findings, and FDA approvals).
Another area contains very useful information by dedicated individuals, such as Allen Edel's blog, "Prostate Cancer News, Reviews, and Views".
My PSA was only 10 but I have about 25 mets on bones from my shoulder to my femur. I read that the chance of having metastic prostate cancer with a psa under 20 is only .03%. I guess I am one of the 3 guys out of a thousand 😩. It is what it is.
Last evening my wife and I went to a seminar about hydrotherapy using the I-Wave machine, developed by Dr Acnine. I haven’t seen any comments on this site about this therapy. Your thoughts?
Two years ago this month I had just been diagnosed with APC. For two weeks I cried and cried. i have a loving wife but all she could do was to try to comfort me.
Then I found this blog! And you were the first person to go into detail about the many issues I was to face, some of the bogus treatments that I was starting and most of all you gave me HOPE!
I am doing very well with a PSA of .02 for the last year. I have hot flashes but everything else is pretty good. I have gone to the Cayman Islands and dove down to 130 feet, I Snow skied in both Montana and Colorado last year, I rode a dirt bike 1,200 miles on dirt and gravel roads in Montana and into Canada and I rode snowmobiles this year in Colorado. In 10 days my sons and I are riding jet skis from Ft Lauderdale to Bimini. Two weeks later I drive my boat around 350 miles down to Great Exuma where my wife will meet me for a 3 week stay in a little house on a beautiful beach. We will SCUBA dive, fish and rejoice in our good fortunes rather then dwell on the ticking time bomb!
You are the first one in our group that helped me change my mental attitude from self pity to going gang busters! I hope all is well with you and your family. If you get a minute I would love to hear from you.
Little by little you will find which complementary therapies work, and which amount to literally pissing your money down the toilet.
Don’t confuse alternative therapies (used to replace conventional medical treatment therapies) with complementary therapies (used in addition to conventional medical therapies).
I think (just my own humble opinion from everything I have read) the baking soda therapy to lower body pH is bogus. It is very controversial. The pH in our bodies varies, sometimes a lot, in different parts of your body. For instance, your stomach is much more acidic. It needs those acids to digest your food, break it down, and convert it to fuel. Also the body seeks to achieve a state of homeostasis, so the addition of baking soda to change the pH will do little if anything to change your pH, and even if it did, there is little evidence to support that this will help your cancer. It’s mostly You Tube hype.
Also, hyperoxygenation with hydrogen peroxide is extremely controversial. It can be extremely dangerous, and even life threatening at the 35% concentration you mentioned. Please research this before you continue using it. The otc H2O2 sold in stores is only 3%. The research showing H2O2 is effective in killing cancer cells is ancient and flawed. It is based on the (erroneous) theory that a low oxygen environment fuels cancer, therefoe, a high oxygen environment will kill the cancer cells. It goes back to the 1950’s with studies done in mice. More recent research has shown it to be ineffective, and could even possibly help fuel the cancer. Google the articles on it from reliable medical sources and don’t go by the You Tube videos you see with false claims. If it worked, every cancer patient would be given it as standard treatment.
I’m not sure the so-called “Greece test” is reliable. Take it with a grain of salt. The CTC (circulating tumor cell) test is probably a lot more reliable. It’s what they use at the Mayo Clinic.
Metformin, on the other hand, has been shown to act synergistically with androgen deprivation therapy (ADT) drugs, improve their efficacy, and extend the period of PFS (progression free survival). Studies have shown that it inhibits cancer cell proliferation, and improves metabolic syndrome. I was prescribed 500 mg. 3x/day. I’ve been taking it for over 2 years. Very few, if any, side effects.
Curcumin May be helpful, but by itself has very low bioavailability. Be sure to use a type that has bioperine (a pepper extract) or other means of enhancing bioavailability.
For bone support I use Prosteon for Bone Health that was prescribed by the urologist who diagnosed my PCa in 2015, and okayed by my medical oncologist at the Mayo Clinic in Jax. Note that it is OTC, but not sold in stores. You have to mail order it. I take it 2x/day. Each tablet has 500 mg calcium (citrate), 1000 iu itamin D3, 50 mcg vitamin K1, 100 mg magnesium, 50 mg strontium, and 1.5 mg boron. I don’t know how much I can attribute to the Prosteon v.s. the ADT, but my one pelvic bone tumor has ceased to light up the PET scan for over 2 years.
The only other supplements I’ve heard of that may actually have scientific support of efficacy are Sulforaphane, an extract from broccoli, and pomegranate, either juice or in a powdered capsule. I use the capsule form because the juice is loaded with sugar.
I’m not a big fan of juicing. It takes away most or all the fiber in the fruits and veggies being juiced, which have other benefits for you. Five pounds a day of carrots seems a little much. Enough to make you start hopping around. 😎
I know there are several men in here who have gone totally vegan. More power to them if they can stick with it. try to follow a Mediterranean diet. Very little meat or dairy. Lots of veggies, fruit, nuts, and healthy fish. I like salmon.
What works for me may not work for you. Travel your own path. Do your research. Read the scientific articles that debunk fads like baking soda and hydrogen peroxide. Do what works for you and go for it. Best wishes to you.
Mark- thanks for the advice. This is my first week on this site and it is surely a better forum for good advice than you tube! I have noticed that I am hopping around occasionally 😬
The fact that you are asking the questions you are asking is a good sign. When we are first diagnosed, I think it's very common for most of us to try to exert control over "something". A cancer diagnosis demonstrates just how little control we really have. So we try to diet, or supplement, hoping that we will stumble upon something that will help. This is very common for caregivers, as they feel even more powerless so immediately jump in and start pushing vegan diets and all kinds of "treatments" that the internet suggests might work. The theory is "what's the harm?" But if you step back and take a deep breath, look for peer reviewed scientific evidence, you won't find very much on all of these "cures" that are being hawked. Picture the snake oil salesmen from the 1800s. That's what most of these websites represent. Eating healthy is good for your overall health, but it probably isn't going to specifically help with your PCa. That's ok, it's a good idea. But also recognize that you may want to enjoy each day and focus on that. I don't know about you, but I really don't want to give up things that i love knowing that my clock is ticking. I won't tell you what to do, but based on your questions, I think you already know...
Thanks cfrees1- I know that I am trying too much. I am in my first month since my cancer reveal and I am on ‘cancer cure’ overload! Thanks to this blog, I will take a few deep breaths ....
Reply to Fitzbruce1. ASAP get yourself a Good oncologist that specializes in Pca. You're not alone because we all are or were scared and sad of our situation. You've got a great resource here with a great bunch of people. Live every day and laugh and don't be on the Fritz Fitz.
Thanks for your reply! 😎. You’re just starting on your journey, and I know this is easier said than done, but take a deep breath, and don’t press the panic button. We’ve all been where you are right now. You’ve got a long life ahead of you.
Just remember to take anything that any of us says in here with a grain of salt. To my knowledge, there are no medical oncologists in here, although we do have some very smart members who have done a ton of research. We are all dealing with the same cancer, but it has a different course in each of us, and we are all physiologically different. Some therapies that work for one individual may not work for others.
Also, the opinions expressed by members in here regarding nutrition, diet, supplements, and complementary therapies are often at opposites. Some are vegans. Others say it doesn’t matter what you eat because it won’t alter the course of your cancer. Others are somewhere in between. Confusing? You betcha. Which is right or wrong? Who knows? Just follow the course that feels right to you, with the guidance of your oncologist.
A PCa diagnosis, especially Stage 4, is a major life game changer. All of your former priorities take a back seat to the realization that you have something inside you that is trying to kill you. If you were Stage 4 at diagnosis, your cancer is not curable, at least not at present. However, you can keep it under good control and have a relatively good quality of life for many years. There are Stage 4 guys in here who have 8, 10, or more years of dealing with this disease. There has been so much progress made in PCa therapies in the past 5 years, and more in the works. Stay positive! This is easier if you focus on life’s blessings, and they are plentiful.
It is my prayer that all of us currently in this forum will be around a long, long time to share new findings, good news and successes (small and large), debate relevant issues in a civil and respectful manner, and support each other when we have setbacks and disappointments.
Best wishes to you and all who took the time to read this.
Mark- you sure can write a great post! Were you or are you a writer? If not, a great communicator. I am so elated to be on this blog w my new APC brothers! Of course I really wish I had never needed to find this or any other PC blog!
I ordered the Prosteon last night. I would think that it would be an early prescription for New Androgen deprivation patients. Cutting way back on the carrot juicing but I am going to try the hydrogen peroxide. Eating very healthy w very little dairy or red meat. Lifting weights at the gym 3 or 4 days a week, playing golf 3 to 4 times a week and paddle boarding almost every day. Great wife n kids. I am 6’4” and 220 pounds but I am tearing up at a moments notice these last 4 weeks. I think that I need to go do some face time w some other APC guys. Take care and thanks again- this is very comforting in a very uncomfortable time!
Never a writer. Was an English major back in college, but that was 45 years ago. Now I don't like to read anything longer than a few paragraphs.
I know how you feel. We all wish we didn’t have to be here, but are thankful this group exists. It has been many things to me...a real source of comfort, inspiration, and support, and probably an overload of information and opinions. But it’s all good. I think it helps just to know you’re not alone, and that there are a lot of other guys facing the same issues.
I applaud you for your diet and exercise routine. I try to golf 🏌️at least twice a week, and hit the practice range at least once weekly, ⛳️ as much for chipping and putting as hitting balls on the driving range. I suck big time, and I’m a total hacker. Shooting a bogey round is a good day for me. I’d do paddle boarding 🏄♂️but our lake has lots of alligators. 🐊 😎
Hang in there! You’re off to a good start on a long journey that will hopefully have many more ups than downs along the way.
It has been 5 weeks since you and several other gentlemen answered my post with heart warming responses. I just had my second ever meeting w my MO. My psa dropped from 10.6 to .27 in 7 weeks. I am very happy! I am starting to deal w the reality better. Still juicing and exercising. Lost 12 pounds of fat.
Thanks again for the early comforting words. I will try to do the same for new members of our group.
It has been 2 years since I first posted on this site. I read back through the responses to my post. Back then and today, your response helped me - warmed my heart and set me on the right path. At the time I was expecting to be dead by now, at best sickly and depressed. Instead, I am healthy, happy and enjoying my family n friends!
I hope this post finds you doing well also. Thanks again for your warm and informational response! It meant a lot then and while thinking of your kindness, brought a tear to my eye today!
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