Warmly I greet you all. I am new to this site and wife of PC husband. I applaud all of you for your strength and determination to BEAT the HELL out of this CRAP! UGH!
Ok, Im done shouting for the time being. I am Sicilian so that happens from time to time Just ask my husband...
Does anyone have experience with PROTON therapy to treat recurrent PC (post RP and no radiation yet) PSA 1.0
My husband has recurrent PC, and now has developed an additional cancer (Head and Neck unrelated to the PC). But back the PC, he had a radical prostatectomy 4 years back and it took only 6 months for it to return. He has chosen, thus far, to go all natural treatments-no radiation, no chemo, no additional surgeries and no clinical trials. (prior to RP = PSA 7.4 and Gleason 9) (post 0 spa for 6 months) (now, 4 years later, crept up starting 6months after RP with a DT of I think 4 months back to 1.0 which is where it is now)
All of the doctors think he is nuts. No surprise there. They cant make any money if he isn't their patient, right? Thats his thinking... They are all just out to make money on the misfortunes of patients. I agree sort of but I draw the line when it comes to danger zone stuff like this.
His natural treatment consists of Spiritual Advisor in Sedona that is channeling his cure through God (I know how this sounds but it really helps spiritually to know that God is in control of the outcome of this whole mess - for us anyway), cannabis oil (60 day treatment daily), raw food (mostly) diet, a little wine each night and a TON of supplements prescribed through his Naturopath.
Is it working?
We don't know. (He will test PSA and get another PET scan mid July to see). What we do know is that he has enjoyed the last 4 years of his life without invasion of radiation, chemicals, hormones, etc. All of which change your body forever to some degree.
Now, Im not discounting IN ANY WAY AT ALL these all can be healing, curative paths for some people. I argued for years for him to do conventional. And at some point he may chose to do Proton as it has fewer side effects (so they say) than traditional radiation. He has the throat cancer to contend with which-right now is stage 1 even though it is tumor on base of tongue with 1 lymph node involvement (possibly 1 parodied gland as well=saliva gland). The docs found this cancer when they were doing an annual PET scan to check for metastases for the PC. None was seen but a nodule appeared in the prostate bed.
He did not have salvage radiation following the surgery. It was either recommended and he refused or it was thought not needed becuase the surgeon was confident enough (??) that he got it all which is NUTS to me... ALL doctors I have talked to and read about say salvage rad following a RP is KEY to ensuring NO RECURRENCE. Anyway, I digress. I only know what I know and I think it was the doc said he didnt need it.
My husband has so far, chosen quality over quantity. Its very hard to understand-for me- and I'm sure harder (especially) to choose for him. But what I have learned from the years I spent fighting with him about what to do is ITS NOT MY CHOICE.. Its his. His Body=His Rules.
So we have enjoyed the last two years more than the previous two because I haven't been trying to control the outcome as much. I help. I research. I try to be the best possible advocate for him as I can be but I do not decide for him. I only support his decisions as he makes them.
Any advice as to the Proton successes and or side effects? Anyone doing C Oil or have tried it as a treatment option?
Thanks all! Very very great to be part of this wonderful supportive community. Seriously hard to find out there.
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ndon2018
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The outcomes for proton beam radiation are no better than standard radiation therapy (photons). The cost for protons is much higher and their availabilty is much less.
I still think it's not too late for your husband to have salvage radiation therapy. I believe that would be a good option for him, but best to talk to a qualified Medical Oncologist, preferably one that specialises in prostate cancer.
Unfortunately, I just attended a memorial of a friend who chose a similar path as your husband. I, like most of this forum would not support his approach to treatment.
The arguments for not doing conventional, FDA approved treatments are not rooted in science but are more conspiratorial in nature. Comments such as "They cant make any money if he isn't their patient, right? Thats his thinking... They are all just out to make money on the misfortunes of patients." are typical of the ones we've all heard. Of course there are lots of people making money from conventional cancer treatments, but that in no way obscures the fact that they are proven to work. Not only that, but people who are selling "alternatives" are not exactly in it for charity.
As far as quality of life goes, the side effects of the treatments I've experienced so far are nothing compared to the pain from the cancer that I experienced before starting treatment. The best way to obtain both quality and quantity of life is to get proven treatments based on real science.
I know you are not making the decisions here and I can imagine your frustration. I wish the best for you and your husband.
Proton beam offers the potential to put more of the radiation on the tumor and less on surrounding tissues and skin. It's a physics thing, and it is quite real. Proton is also more tightly focused than nearly all other kinds of radiation. The beam is so small they typically spread it out before it gets to the patient.
That's hasn't translated into huge benefits, but that's due in part to the lack of large, long term studies. The smaller studies suggest proton is no worse than radiation in terms of 5-year or 10-year outcomes.
That's damning with faint praise. The PROTECT trial showed that to prevent one man getting distant metastases after 10 years, you had to treat 33 men with (conventional, not proton) radiation. That means 32 men didn't get that benefit, but suffered all the ill effects.
A lot depends on the patient, the doctor, and the facility. There are some 28 year old proton facilities out there, and a lot of brand new ones. The older facilities generally can't focus on the tumor as closely as the new ones, nor can they control where the radiation goes as exactly. On the other hand they have more experience.
I've worked on both the oldest and newest proton beam facilities, and if I were to decide on protons, I would definitely go with the newer machine. A lot has been learned over the past 30 years, and the new machines incorporate some of those lessons.
The latest craze is pencil beam radiation, which in theory can trace the tumor in three dimensions. In practice things are so close together down there that a sneeze or twitch could cause problems. I was told this by the doctor who developed pencil beam therapy in the US.
You've already figured it out: it is his body, his life, and his choice. All of the conventional treatments have dreadful side effects, and they don't work very well.
There's no right and wrong here; it really is his choice, although of course you have a lot of influence.
FWIW I've reached similar conclusions and followed a path not so very different from your husband's. Nearly all of my doctors call me names and worse, but I've been doing this for 11 years, and I'm in better health than I ever been in my life. There's no way I would have been able to say that if I had let the medical/industrial complex have its way with me.
It's fine if you want to pursue options for yourself that are outside the realm of conventional treatments. It's your choice. But I take issue with a statement such as: "All of the conventional treatments have dreadful side effects, and they don't work very well."
That statement is simply incorrect. If you can show treatments that work better than the standard of care/conventional treatments backed by trials, please provide some links to the science-based studies proving them. "It works for me" is not proof. And again, your statement of "there is no right or wrong here" is also false. Recommending treatments that aren't proven is wrong and I think it's important to point that out.
Sorry if this is harsh, but people's lives are depending on finding proven treatments.
By the way, my friend didn't last more than a couple years doing "alternatives to treatment". Just about everyone that knows him is aware that he would probably be alive today had he listened to all of those doctors in "medical/industrial complex".
But one or two people is a small sample, we really care what happens in large groups. For some insight into that, here's an article on the subject:
Gregg57. I can see you are very passionate about the usage of terms on this site. Is there a guidebook that could help us understand what we are allowed to say and not allowed to say? I ask this in all seriousness. I don’t want to get slammed for saying the wrong thing.
It's OK to disagree here, I am taking issue with specific statements that are made and commenting on the accuracy of those statements. I am not attacking the individual that makes them. Any debate should focus directly on the issues, claims, statements etc. and not the individual.
Yes, I am passionate about this but please keep in mind, the decisions we make here regarding treatment for advanced prostate cancer are a matter of life and death for many of us.
I truly hope that he finds an effective treatment that gives him many more years to live. There is lots of information out there that you can find, don't take any one person's opinion. Your husband is fortunate to have someone who is helping him research this.
Fortunately for those of us with advanced disease, we have many effective and proven treatments available. Some of us here with stage 4 prostate cancer have used those treatments to get 10 to 15 years or even more . Yes, some treatments do have side effects but I don't complain much about those because I experienced the debilitating pain from the cancer. Nothing I've had so far is even close to that.
Take all the issue you want, this place would be boring if it were an echo chamber.
I didn't say that there are treatments that work better than conventional. I said that conventional treatments, particularly RP and RT, don't work very well and have dreadful side effects. Those are two entirely different statements. If you want to be harsh at least be honest; don't put words in my mouth.
In the same post I quoted results from the PROTECT trial, a large, long term study.
Here's a direct quote from that paper, published in the New England Journal of Medicine. It doesn't get more mainstream than NEJM.
"we estimated that 27 men would need to be treated with prostatectomy rather than receive active monitoring to avoid 1 patient having metastatic disease, and 33 men would need to be treated with radiotherapy rather than receive active monitoring to avoid 1 patient having metastatic disease. A total of 9 men would need to be treated with either prostatectomy or radiotherapy to avoid 1 patient having clinical progression."
I'll spell it out: that means there is less than a 4% chance that RP prevented metastatic disease in that study, and a 3% chance the RT would do any good. The odds that these barbaric, life-changing, disabling treatments would prevent progression is one in nine.
A companion paper documented serious, significantly greater declines in quality of life in men who took RP or RT compared to active monitoring.
It takes a lot of gall, or ignorance, to call such a wildly ineffective treatment "proven." It's proven not to work very well.
You don't get to make that call for me, for ndon2018's husband, or anyone else. You get to decide for you and only you. My life and my choices are none of your business.
I said there is no right or wrong here because neither you nor I nor any doctor knows how any patient, other than ourselves, weighs quality of life issues when making these difficult decisions. What I decided for me is right for me. What you decided for you is right for you. What ndon2018's husband decides is right for him.
Recommending treatments that too often turn a healthy vital man into a crippled, piss dribbling eunuch when the odds of those treatments helping are single digit percentages is dangerous and dishonest. The fact that doctors with a financial stake in the decision do it doesn't make it right.
Sorry if this is harsh, but people's lives are being ruined by the lies told by doctors and their sycophant patients. I've lost count of the divorces, depressions, and suicides in men I know who deeply regretted being rushed, browbeaten, and frightened into making a dreadfully wrong choice for them. Heart attacks and drinking oneself to death are just as fatal, and are linked to these treatments.
Men have a choice. That is truth. All I do is provide well-supported evidence from mainstream medical journals that might help them make a wise choice.
Prostatectomy was great for me. Felt better afterward than I had for months. Pain gone more energy. Didn't know undiagnosed problem was pulling me down.. Unfortunately my rrp left spider web of every neural and veinous bundle out of prostate area testing Gleason 9/10 and PSA went up 10 points in next 6 weeks instead of down. Even unrelated tissue sample from posterior rectal plain showed Gleason 9 in nerves and veins. No target for radiation without major damage to surrounding tissue. Went with chemo. and ADT drugs. Todays test results showed PSA at 0.1 19 weeks after chemo but continuing Xtandi at lower dose (120 mg not 160). We all have differences in mindset and bodies. Mine is working OK with hit it as hard as you can stand but back off if QOL suffers too much.
I was really just looking for a few suggestions but I think I struck a few nerves. Unintended completely. I just wish everyone peace and Gods blessings to find what will work to bring you to the happiest state of being possible. None of us have a crystal ball. No one has any guarantee of time. Thats why staying in the moment is truly a worthwhile added state of being and considered also medicinal. Its easy to say-hard to do... I know.. But its always worth repeating in my opinion. Does that solve problems? Probably not. But I thought I would offer it anyway. Thank you for your responses. I will pass the along to my husband. Best of luck to you all
Please don’t take this back and forth personally ndon. And don’t allow it to make you leave this site. Too much here to learn. There’s just a lot of passion here and everyone wants to help. Just different ideas on the best way to do that. I for one am on Zytega and lupron and my psa is down to .02. I feel better than I have in years (other than some hot flashes and lower libido ) because my dr convinced me to do serious weight training three times a week with a trainer to avoid the side affects. I was scared to death of the side affects so I listened. I wouldn’t even know I’m on anything. And early use of those two drugs has proven to increase life substantially. I’d at least encourage your husband to consider it. It works so much better early rather than late.
Schwab, Care to share your training routines? Exercises, sets, reps, rest between sets. Any cardio? Curious to know if I am working out the right way. Thank you. Keep on keeping on my Brother.
I started seeing a personal trainer, and I'm glad I did. They will tailor a program to you and your conditions and limits. Perhaps more importantly they will teach you good form and how to do a lot of different exercises. Mixing things up keeps it from getting too repetitive and boring.
These days I don't see the trainer as often, but I still go. It helps keep me on track. Now I can do most of those exercises at home, confident that my form is good and that I know the right weights, number of reps, rest intervals, how much cardio to put into the mix, and so forth.
What Schwah said. Spirited discussion is a good sign, so long as it is polite and respectful. Strong words are appropriate at times. The stakes here are high.
If you think this is bad, you should see what happens when grant proposals are reviewed, or papers are written. Science is a blood sport, not for the timid or faint of heart. I spent 20 years with some of the smartest scientists in the world as my "customers." Calling them demanding would be to lie by omission. I saw more than one extremely heated discussion, face to face. It never came to blows but there were times I wondered.
You're quite right that no one has a guarantee. All of us will die. Those of us with advanced prostate cancer have a slightly better idea of why we will die, but we don't know when or even if. So we're really not that different from everyone else.
Where we are different is the powerful lesson that life is precious and short. There's no time to waste and we should all live every day as if it were our last.
Greg57 wrote: "But one or two people is a small sample, we really care what happens in large groups. "
I couldn't disagree more. I care about treatments that work, for me.
I want a prostate cancer treatment with a number needed to treat as good as appendectomy for appendicitis. That number is about 1.02 - appendectomy cures appendicitis nearly all the time, but a few people die anyway, so the number isn't 1.00.
There are no large clinical trials, randomized, placebo controlled, for appendectomy. There never will be. There doesn't need to be any such trials because appendectomy is an effective treatment. It would be unethical to deny an appendicitis patient this treatment.
Large trials are only necessary for weak, ineffective treatments. Large numbers give enough statistical power to see small effects. That might help us learn, or it might be used by the unscrupulous to claim that a treatment is effective when it is not.
I care about me and my outcome. I want to die with prostate cancer and not of prostate cancer. Right now the choices are pretty limited, and none of them are very appealing. That's life, no one said it would be fair. But it doesn't do me any good at all if they torture another 10,000 men to find yet another treatment that only helps 3% of those subjected to it.
This series of commentaries at this link may provide some more "food for thought" between now and when he gets his next tests results and recommendations from his medical doctor(s).
Hi and welcome....at the end of the day you are right that it is his choice,and no-one should say otherwise. I have a firm belief that what is good for one man may not be good for another. I think that we should all support each others choices and encourage each other no matter what path we choose to travel. There is no man alive today that knows how this cancer starts or how to cure it,so it is important to keep our own identity. More power to your man and may god bless and comfort you both....
And Greg57 said that it is not about the individual... well it is all about the individual and NOTHING else.....
in reply to
Don't misquote me.
I didn't say it wasn't about the individual. Of course it is, and we all make our choices as an individual. What I said is: we should not make our treatment decisions based on one person's experience, but we should look at trials where large numbers of people are treated. I'm sure the majority here would agree with that common sense approach.
Hi and welcome, please encourage your husband to join this forum there is a wealth of information and Brotherhood here. I am also on Zytiga,Prednisone and Eligard for my APC. I might add the same side effects as mentioned in a prior response hot flashes,ED which are both at this time very minimal and managed. Hormone therapy has so far worked for me and I haven't felt this good in years. PSA is down to undetectable. Exercise does play a key role in our survival I walk as much as possible it not only helps my body but clears my mind as I look at all this beautiful world has to offer. I will add your husband to my list of Brothers in my daily prayers. Best of luck . Leo
Leo, kiwi, cater, everyone... ❤️you are all gracious and wonderful! I am encouraging him to join...he is former military guy with 30 years in USAF. Retired about 4 years ago, but actively working again which I think helps a lot! I think he has plenty to connect with here but if anyone is military I’m sure you guys will have lots to chat about lol.
Thanks again and I’m staying here for the wonderful commentary and the great research you all provide. You know how important your posts are... Lifelines to some for sure.... I am grateful beyond to have found this forum.
To boost his naturopathic approach, he should be a devout vegan. Download the app "the Daily Dozen" from Dr. Michael Greger (nutritionfacts.org) and live within the boundaries defined.
Here are some videos that will help guide him on this journey.
Hopefully, your naturopathic physician has him on inositol hexaphosphate (IP6) and inositol from one of the 3 companies that produce it in powder form. He has also asked your husband to read Dr. Shamsuddin's book:
If this information on IP6 is new to you, I would seriously question the naturopath's knowledge. IP6 will fight the head and neck cancer and the prostate cancer. Six heaping scoops of the powder on an empty stomach mixed vigorously in water only, no food for at least a half hour. Don't make smoothies out of IP6. Any protein undercuts the power of IP6. Repeat in the evening. I use Cell Forte IP6 from Enzymatic Therapy, but the other two competitors offer fine products. Allstarhealth.com offers fair, competitive pricing,
HealthUnlocked will provide great insights from men who know far more about oncology options than I do.
You have a difficult job trying to change hubby’s mind. Clinical trials are necessary to advance medicine safely with proven efficacy. It’s not fair to the thousands of dedicated people who do the research and implement it via treatments to dismiss them as interested only in money. I’m not a doctor but I sure appreciate what they do.
Cancer is a terribly complex heterogeneous disease. It’s different in every person. Not like appendicitis .
That being said, it’s everyone’s right to make their own decisions about treatment. But they should be informed decisions. To the extent that their decisions hurt others because they fear that the decider is shortening their time on earth , it’s sad.
I never say they do this "only for the money." But money is involved, doctors are human, and there's just no denying that money affects papers, research, and treatment decisions.
Given what we know today, there is no justification at all for cutting the prostate out of an asymptomatic patient with a Gleason 6 biopsy. Snuffy Myers said that. He warned patients not to become the source of a urologist's next boat payment.
Welcome to our rag. , father in law had a radical took prostate out but no radiation, 7 years later he wasn’t feeling good ,scan of abdomen showed cancer back, did radiation on him ,after that did a full body scan , showed cancer everywhere. 8 days later he died. Get him in to do the scan with contrast ASAP. I had chemo with stage 4 and Mets in lymph nodes,bones and spine 23 months ago, doing great, still a month to month deal but at least so far we are beating the beast. Had a scan last month, fight the good fight.
I do congratulate him on remission for 4 years. Gleason 9 is a beast.
Regarding "natural" methods, I personally know a young man who died very fast going off on a tangent when he abandoned his traditional clinical treatments to do holistic methods.
There was a book written by a woman, "you cant do better than GOD" or something to that effect, about juicing, prayer, and cancer. Turns out the woman was FRAUD. She LIED in the book saying she cured her breast cancer with her juicing, but truth came out later that she cured her tumor with radiation.
I have a friend who is very religious about Vegan and believes it cures all diseases. He convinced me to try going off my drugs to go Vegan for a while. What the heck, I tried it for 6 months. I needed a medication holiday anyway. In that 6 months, got my first bone met. Went and had it radiated and went back on my drugs. I went off the strict Vegan diet to start enjoying my chicken tacos again but still enjoy the Vegan split pea soup he taught me to cook, and I make that soup often.
Opinions vary if Proton radiation it is better for first line therapy, and dont think it is recommended at all for 2nd line treatments. Traditional radiation has many more targeting options than proton therapy. You have SBRT and other methods with traditional radiation that are more targeted.
Rarely, when I can afford it, I buy from whole foods market organically fed, low fat filet minion for the BBQ and some chicken. When I BBQ, I grill a LOT of veggies. I BBQ the corn on the cob wrapped with foil with some olive oil, lemon pepper, and a dash of paprika. I make guacamole with tomato, onion, cilantro, lemon pepper, bell pepper, and a dash of rock salt. I grill corn tortillas with a little olive oil. Delicious.
He really enjoyed the song. We have sung it at MANY dining outs and ceremonies. He retired as a Colonel which was a complete honor. We had a great time meeting and partying with the nations best and most heroic people on earth.
I am starting a foundation, and there are many other as well that focus on raising awareness for The Burn Pits.... So, the BURN PITS; in Iraq and Afg is what we think greatly contributed to my husbands cancers. If anyone here was exposed to them, I just wanted to make you aware that there is a NATIONAL Registry that the Veterans Administration has created and you can sign up if you served (and were present) during the time of the burnings. Also there is a class action lawsuit against a company responsible for burning things such as BATTERIES, USED HYPODERMIC NEEDLES, REFRIGERATORS and AMMUNITION in 191 pits (of which only something like 19 were authorized). Burn pits that ALL ranks and services that were there WERE exposed to causing MANY (149,000) cancer, lung disease, random illness, etc. etc. etc...... So....yeah.. kind of passionate about this. If you know anyone who was exposed please kindly private message me so I can forward you the attorney that is handling the suit. We are sure that this along with the nuclear alert he pulled for the 10 years did it to him. OH yea, the crew he was along side during this time? ALL died of cancer early like 30s and 40s. I believe this info is important and should be shared.
Well he definitely out ranked me. I like to tell people that I was a "USO commando" but that humor is lost since most people (civilians) do not know what the USO is. I've heard of the burn pits but that was way after my service (thank God). I do not know anyone who suffers from cancer due to the pits but I have a very dear friend who suffers from agent orange. I admire you for your work in starting "the foundation" and for being a wonderful wife. Your husband is a lucky man to have you as a caregiver. But you must take care of yourself and don't bite off more than you can chew. As you will see from time to time I use humor in my posts because I believe laughter is the best medicine. so I will leave you with a little humor that I've posted before.
Here it is:
A man comes home from work and says to his wife "Dear I'd like to play Doctor"
She says "that sounds like a wonderful Idea".
Man says "I'll be the Doctor and you be the patient".
She says "ok dear"
So he left her sitting on the couch for two hours.
It appears to me that you are suffering as well. No matter how much you want to help your husband, your anxiety is slowly taking a toll on your well being. Your husband seems to have found his path. You have honored his decisions through you don't agree with some of them. Try to find peace with what you can't change and comfort in the relationship you have built over the years. Your future is defined by this moment and not in the duststorm of a hundred contemplated future moments.
<3 Many thanks Jvaughan0 You are a Gem sometimes one gets lost in all the mist of all of this.. but I do thank you for your kind words and for thinking of me. Im... tough? lol yes thats it. Im tough. lol..
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