18 mos ago, my husband was told by his dr. that he "most likely had two or three good years left." (WHY do they say stupid things like that?) I think that a lot of people believe whatever the dr. says and subconsciously program themselves accordingly. I, on the other hand, thought to myself, "We'll see about that."
Treatment was Lupron infusions every three mos., abiriterone, anastrozole, and 5 mg. prednisone. I was watching for the scary side effects and when they became evident about a month ago, we stopped taking them and notified his oncologist.
What WE were doing independently: 1. Switched to a plant based diet. 2. Took high dose melatonin, which works to prevent cancer cells becoming resistant to ADT. 3. Taking a good quality mineral supplement. 4. Vitamin C -IV's weekly. 5. Pectasol 6. Graviola 7. Green tea extract and a good quality mushroom supplement. There are more, but I'm not saying that the same protocol works for everyone.
I think he's his own best weapon, as he doesn't get stressed about much. He has exercised for over an hour every other day and continues to sleep well.
The takeaway here is to do your own research and do NOT just turn your bodies over to a doctor. Wishing you all well!
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Just curious. Ever think that the Lupron + abiraterone contributed to the clear scan? There are thousands of guys who have had that result in clinical trials. Wishing you continued good results.
Oh, no doubt and we may have to return to it in the future, but hopefully our doc will agree to going about it a little differently. Some dr's are coming to the realization that pulsing the ADT, in our case, Lupron, is a lot more effective and safe than doing it continuously. Testosterone is critical for mens' health and the side effects of ADT have killed many men. I watched for the side effects and when my husband's ankles were swollen in the morning and his resting systolic was 197, I took him off all of it. His oncologist never once asked if he was having any side effects. Unfortunately, some oncologists are so focused on cancer that if the patient dies of a heart attack due to meds he prescribed, he'll still consider himself a success because he didn't die of cancer.
Since you have apparently done a lot of research, which studies support your claim that it is more effective to stop ADT as soon as any SEs present? BTW, no argument about SEs sucking!!!
Good Docs don't "realize" things....they adjust their advice if/when new studies support new approaches.
Are you sure that Doc told you that hubby had 2-3 years? If he did, of course you should finda more educated Doc!! As we all know, IMPOSSIBLE to accurately predict anyone's survival after a PCa diagnosis!! Now, if he told you the average was X years, that might be considered a reasonable thing to say. ....with a range of maybe 1 -12 yr. BTW, it is my understanding that new protocols have extended that average to 4-5 years...again with a wide range of outcomes.
Here's hoping he beats the "average" by many years!!!!!!!!!!!!!!!!!
Did he have curative therapy? There is nothing in his profile. If he didn't have distant metastases, and had radiation and hormone therapy, it is possible he was cured. If he had distant metastases, your therapy will kill him sooner.
Anastrozole? Why?
Anyone who relies on his own research, has a fool for a doctor.
For years and years, doctors told us, "Many men your age have prostate cancer and you'll likely die with it but not from it." Until it metastasized. There was a spot on his pelvis and a spot on his arm. No radiation or surgery, just right to ADT and the aforementioned drugs.
And why anastrozole? Don't ask me. I didn't prescribe it.
I'd never call anyone a fool for making poor decisions while under the stress of a serious illness, but I would certainly hope that they can either do their own research or have someone who can help....which isn't to say they should dump their doctors. It just means that it's wise to go online and see what various doctors are doing around the world.
A empowered patient will ask the purpose of each drug, not just take whatever is given blindly.
Doctors are a resource for the patient. Instead of misinterpreting research on the Internet, the patient will do much better if he avails himself of that resource. Most patients do not have the background to assess what they "research" and can do a great deal of harm in the process.
Appearences can be deceiving, because prostate cancer usually progresses slowly. A CT scan cannot detect tumors less than 5 mm, so based on our best research (the kind that doctors do) his cancer is probably occult and progressing.
You wrote:"The takeaway here is to do your own research and do NOT just turn your bodies over to a doctor." So, you are posting this to advocate challenging conventional medicine. It is ingenuous of you to now say that you are just sharing.
That's why PSMA scan should be done. In my case CT, MRI did not show anything conclusive even after prostatectomy but PSA was still high 4.2 and only PSMA found tiny stop in T2 vertebrae and later 5 more small spots in ribs.
I have heard that nuclear scans are way more accurate , and is what i will be having along with PSA bloodwork to determine if my three Pluvicto infusions were worth the trouble.
I would recommend pelvic radiation. I'm part of the EXTEND trial and I'm a firm believer in killing the mothership. ADT stops but doesn't kill. I like the idea the primary source, the prostate, hopefully, is dead.
Hi TA. I keep seeing this term “Curative Therapy”. Can you explain what is meant by this because I would have thought that this is the only type of therapy that we would all want. Or am I missing something here?
After distant metastases have occurred (Stage M1), therapy (at least those known to us) can no longer cure prostate cancer, but it can delay progression quite a bit in some cases.
OK, thanks I get it now. Basically what you are saying is that once PCa has been detected outside the prostate then curing it is not an option. The only therapy available is to slow down the progression. So the key is to throw everything you can at this disease while it is still contained and one way to do this is to immediately get onto HT to commence starving this stuff and stoping it from growing so that you can then formulate the best treatment plan for your particular circumstances. Whether that be RT or RP.
Yes of course, my fault, I'm referring to GS of 8 to 10. I'm on 8 and if I could resist having HT, believe me, I would. My HT hasn't started yet but from everything I read about it, tells me that while it may be necessary, the likelihood of severe SE's and maybe even long term health issues are real.
My Oncologist told me that if your PSA started to rise again after 1. Surgery, and then again after 2. Radiation, you had it for life to deal with. Am I wrong ?????
I love your post! Thank you for sharing. God bless you and your husband. God can do what man can not. I’m on a naturopathic protocol myself. This platform is brutal on us. Keep sharing the good news, there’s people on here that need the testimonies of brave people like yourself.
I can relate to your doctor's comment. My MO told me she could guarantee me 2 years. I took that as meaning after 2 years things would go downhill quickly. I've read the studies and she was completely wrong. As for me, I choose SOC with a second opinion after all tests.
Fantastic that the PSA is down and the CT scans are clean. When I started treatment there was alot of radiation, Eligard and Zytiga/prednisone. All these did not start at the same time, starting with Eligard, then Zytiga, then the radiation. It's when Zytiga started that I noticed my blood pressure shoot up to vey high numbers, like 190/120. After starting and stopping zytiga several times and watching my bp go up and down depending on if I was taking it, we switched to Xtandi. You might want to talk to your oncologist about Zytiga and moving on from that, and combine something else with Lupron. Also, I think the radiation was very helpful so I would not shy away from that.
Sing it from the roof tops ! I started taking Graviola switched to Paw Paw then for no reason stop taking other than due to how much else I am taking, inspired to start taking again paw paw is stronger than graviola same onco ingredients. I take many supps to many to list all but here's a few Pectasol , Tudca , Fenben , Ivermectin, Lactoferrin, curcumin, Artimisinin, Vitex, Zeolite, DIM, Cryptolepis and chinese scullcap extract, Betulinic Acid, Honokiol, beta sistorol. VitE Succinate . Spirulina 8 tabs/ 3 times daily and Prostabel has Pao Periera and Rauwolfia extracts . Yes my liver/ kidney function test good. So with clean scans is it safe to say your husband is class as NED? sounds that way , Please post more on his protocol and any updates.or if you have questions on my proto. God Bless.
Wayne's taking a lot of the same supplements, and I've just recently added a good trace mineral with fulvic acid. Actually, I have to pulse his supplements because it would be too much to be taking at the same time, but I think he's doing well. When it's time for him to restart Lupron, I'll be asking the dr. about alternatives.
Yes same here try to spread out the supps or before and after meals . I put sticky notes on every bottle what to take with what , dosage etc. my memory is bad sometimes. I stop asking my dr about supps , useless. lol
1st - 👍👍and hoping that all things continue to go well.
As for 18 months, that's a blip in time for GL9.
I'm 18 months + 7 additional years for GL10 and still consider it a BLIP in time. I attribute my wellness to 1st - treatment and then LUCK and then living healthier.
Only the TIME to my death or recurrence will show how successful my chosen treatment protocol is.
That's pretty basic. When I was told 3 to 5 years to live I wasn't very concerned. On the one hand, I know two men who died last year from prostate cancer; one had had it about 4 years and the other a little longer. So it's deadly serious.
OTOH, other men live longer; just reading this forum for the last year or two I see men attesting to living 15 or 20 years. Life expectancy isn't the point IMHO; it's making the most of every day, making sensible decisions, and hoping for the best.
Worrying and wringing hands never did anyone any good and probably decreases life expectancy (certainly quality of life).
That's right. He's his own best weapon...not at all stressed, just living his life and allowing me to foist the protocol/pills on him! He's always worked out every other day and is generally in good shape.
I was diagnosed with a aggressive prostate cancer that had broken through the capsule.........This was 1999 and i was 61 years old. Today at 85 and counting, i have had my third Pluvicto infusion. Now waiting on scan and blood work to see if we are on the right track.
You stated not all supplements were mentioned in his diet. I’m curious if that included low sodium V-8 juice? Just a hand full on his forum recommend it along with broccoli and broccoli broth? Is that part of a plant based diet you mentioned?
We don't drink V8, but eat a lot of veggies, including broccoli. For months at a time, I'll juice organic veggies, especially carrots, but I have to pulse that because it's just to much to do everything at once.
G9, eight years out, radiation and now 31 months of Nubeqa/Lupron with psa <0.02 ng/mL. Starting i Jan 2024 will take time off from both with quarterly testing. MO has suggested this time off for the last year. Radiation Onco has stated die with not of. Live your life: its the only one you have.
Rather irresponsible to predict survival, although 2-3 good years could just mean before symptoms start to affect day to day life....even aggressive PCa progresses relatively slowly, although the metastases can be more aggressive.
I took the same approach to you, rather than just give myself over to the system, I decided to also carry out my own research and make my body a very inhospitable place for cancer cells to survive in! Cut the carbs to a minimum, lots of cruciferous veggies, and a hatful of supplements.
Whether it works or not I don't know, but it makes me feel a lot better.
First this to remember is your husband is NOT a statistic. Doctors tend to base those kinds of comments on very broad statistical data base. I too, was give the same kinda time line and that was 13 years ago. A good attitude will rule the day but DO NOT throw out Western Medicine. I suspect there might be a happy medium in here some where. Good Luck to the fellow warrior and keep up the fight.
No, I'm not throwing out allopathic medicine. They have some nifty diagnostics and miraculous surgeries but when it comes to chronic illness and disease, well, we'll keep our toes in the water but will not be just turning over total responsibility for our health to him.
I was interested in your post about Melatonin, but cant seem to find what dose is needed to be effective...found the article below in NIH, but it uses nM (nanomoles) and I cannot convert these anywhere to mg of Melatonin...
"A dose of melatonin within the nanomolar (nM) range (≤10-9 M) usually leads to cytostatic effects, while apoptosis occurs at higher concentrations [15]. At a dose of 10 nM, it demonstrates antiproliferative effects, while at 50 nM, it influences cell growth, and at 1 millimolar (mM), it influences cell viability. Unlike the traditional chemotherapeutic agents, melatonin induces death only in cancerous cells sparing the normal cells [15,16]. In addition, melatonin administration at various doses from 1 mg to 10 mg/kg, either as short, intermediate, or long-term administration, is shown to offer very minimal side effects compared to medications serving a similar purpose as melatonin. Mild adverse effects reported include headache, nausea, sleepiness, and dizziness [17]."
What dose do you use? Do you have any other references you used to develop this treatment? Yes, NEVER leave your health care solely to the care of Healthcare experts...ever. Worst mistake of my life...but we move on. Rick
Rick, search "Dr. Frank Shallenberger melatonin." He has some YouTube vids, too. You'll get the answers to all your questions about melatonin. Wayne takes 4-60 mg. capsules daily...you literally can't overdose on it and, no, it doesn't make you sleepy until it gets dark. I give him one breakfast, lunch and last snack at 4:30 then one with the last round of pills for the day at 8:30.
Ok. The national Institute of health talks about a dose range of 1 to 10 mg/kL. Your husband is taking a total of 240 mg and I know he weighs more than 24 kg. But it does say that a large dose does not have any side effects. I will check your references and see what I find.
I found a lot of evidence that Sulforaphane is also very active against PSA doubling time. Which means it also throttles back the growth of cancer. i have written extensively about that in my blog space. You may want to check those references. Your husband would look forward to an additional supplement like he wants a hole in his head. But I have been dosing on a supplement which I listed in my blog plus I grow and take 100 Gr of broccoli sprouts every day.
But I’ll definitely check the Melatonin reference. Thanks.
Here is one way. This study is what I followed...it appears that low dose radiation treatment (LDRT) plus long term ADT (LTADT) works...if your PCa staging and diagnosis 'fits' this studies parameters, you "need" ADT...and you need it long term, i.e., more than 18 months. Taking ADT in other combinations is not as good and using only RT without ADT is worst...so, there is one case here.
But, who benefits from ADT? Well, if you took a Decipher test there is a report that comes with the analysis that will tell you if your genetics will benefit from ADT treatment...so, if you could benefit then you "need" ADT...if not, why take a 'therapeutic poison" (to quote Dr Mullhall)? Check this out;
Min 17:25; use of grid signatures to determine 'who benefits from ADT
Min 19:03; Best predictive value for test to determine if ADT will be 'effective'
...and I am sure there are other models, nomograms and predictors you can use...if you "need" ADT, take ADT, but dont be fooled...it has benefits and very serious consequences...but, if you are alive to complain about them I guess that is a plus (I am channeling Doctors now...) Rick
First of all tell the doctor to "pound sand" with his predictions about your husbands demise.
Now this is my personal experience, and not meant for you or your husband to follow. I have religiously followed my M.O.'s (MSKcc) advice without question and do not rely on supplements or any "so called" diets (Mediterranean only because that's my family's background). I began my travels at 66 and am now 87 years old. I've had "some" of the so called side effects but weathered them fairly well. Only reason for the above is to point out my longevity fighting the beast and to dismiss your doctor's predictions.
Do what will suit you and your husband's health and life style and don't rely on Dr. Google or Dr. j-o-h-n for treatment advice. With a bit of a wink and a nod smile at our posts while you both live and laugh....God Bless (If you should believe in any).....
Hey j-o-h-n-n-y where's the humor? Harriet, I told you before the writers are on strike.
That's what I'm doing proving them wrong, when I was casually diagnosed in July 2021, the next seizure will probably be your last" they hope it will prove a fighting mechanism for me, although a separate incident whereby a severe side effect from hormone injections proving to be severely life threatening to my rib cage structure did not help my patience🥴🙄 I am severely bored now in effect just counting my days, lack of communication from almost bored/embarrassed relatives and close friends who are aware of my terminal condition and just don't know what to say to my enquiring emails and texts?🤬🙄
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