Radiation or operation with mets and ... - Advanced Prostate...

Advanced Prostate Cancer
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Radiation or operation with mets and beginning ADT only once symptoms arise?

We met our homeopath (who is also a normal doctor and has to do with lots of cancer patients) for the mistleltoe injections. In his opinion, he would do radiation or operation even if bone mets confirmed, not so much to prolong life, but because he believes it is better to avoid problems that could arise once the main tumor spreads. My husband has Gleason 9 (in one core, the other cores with cancer are mostly 4+3) and T3b N1 M1 cancer spread to seminal vesicle, 1 lymph node involved, possible bone mets (showed in 2 PSMA scans, but did not grow after 4 months (2nd PSMA), and one bone biopsy to the pelvis did not confirm it, but maybe they missed it). This doctor also says he had patients with false positives in PSMA...

In addition he would not begin ADT therapy before symptoms arise, because of side effects and the fact that my husband has heart disease (also no symptoms but high grade atherosclerosis).

Till diagnosis march 2018 we did only natural therapies (cannabis, supplements, healthy diet, sport, yoga), PSA went down from 17.9 to 12.5, also good PSMA results (30% less cancer activity), but now PSA on the rise again, 23.2 last measure.

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Get yourself a real doctor who actually knows about PCa.

This doctor is misguided. The homeopathic ‘doctor’ treating my friend effectively killed him.

It’s your choice though.

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We have also a whole tumor board at Zurich main hospital... but they also have different opinions, the urologist wants to do OP, but there is the question about the mets, if oligometastatic or not, the others think more of ADT and so on...

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Thanks TommyTV.

I also have friend who went to one of these quacks. I went to his funeral/memorial recently. He died essentially without any proven treatment. He paid a ton of money for no results. It left his wife in a lot of debt. She is very bitter.

I don't want to see another person end up like my friend. Go with science-based, proven treatments. Yes, we all know they are less than "ideal". But "ideal" is not the standard we use to measure their effectivity. "Conventional Treatments" as some call them, have been tested with large numbers of people in clinical trials. They are the best we have right now, and they do give us the most life expectancy.

For PCa patients with advanced metastatic prostate cancer, primary ADT is the standard of care. Early zytiga or Docetaxel chemotherapy is often added to improve overall survival.

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Hi Myriamole... the natural remedies can do much to aid in strengthening your immunity.. and help with symptoms of APC and treatments.. Agressive APC needs aggressive treatment, but continue nutrients diet and any thing else that you think makes us stronger.. I ve done many High dose vit-c I v’s , dmso and other homeopathic methods my first two years with APC. I believe that my current “ no visable signs “ status is do to following my naturalpathic’s lead ....I’m not a Doctor.. You’ll get the plan best for him from the specialist.. I suggest to not give up on the holistic stuff... yoga and the rest improve quality of live.. Others will inform you about treatments options.. Believe in him being around for many years.. Love each other.. heal him with your love.. Once APC has its foot in the door we will be dealing with this until we parish.. Let’s try everything to extend our stay here in this grand hotel.. There will be plenty of negative. Accentuate the positive and enjoy anytime not in turmoil or anguish. You are not alone. We have been where you are now.. not knowing is pure hell.. Many prayers to you both... Scott

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Thanks for encouraging me. What therapies did you decide for, and how long did you wait till beginning a allopathic treatment?

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I started my Nat dr the same time I started adt and just before Rt and during that entire time .Fast and live. On you tube. I fasted two 500 calories days out of 5 weekly radiation treatments.. per week for 8 wks . Max dose radiation.. Then gold markers implanted in prostate. Tattoos on ab and hips to help line up the rays. Rt is painless . As time goes on fatigue sets in .long term it zaps our bones .. many many men have Rad prostatectomies and then find some pc missed or a few years later it comes back.. The Nature of APC is endurance.. who can out last who? No sugar or processed food and a plant based diets recommended.. I went from 230 down to 165 during Rt.. I’m back ton200 . No fat and little muscle due to castrations. I did orchiectomy 9-16 to avoid the shots. I’m glad I did it. Most men shutter at the thought.. not like I was planning to start a family at 55..the theory is that Rt and chemo work better with the fasting already weakening the “C “ cells they are more efficiently eliminated.. Whatever beliefs that you have will be tested so strengthen them.. Keep your faith. This is a trial of life. Reflection, lamentation pain are all normal .I pray for the best.. keep only positive thoughts and people around your husband...It was important for me to eliminate all stressors ..good luck with that.Stress is what inflames PC.. Only love can cure the pain...This is a wonderful cite. Just don’t mention too much natural stuff because there are a couple top dogs that don’t believe in holistic methods. High alkaline diet with plenty of veggies is best..Seek and together you’ll find a way thru the mess.. Fear of what “could or might” happen in the future can disable ones healing. Before long, you’ll know more than you ever wanted to know about our masculinity eating passenger APC .. This can be hell on the wife or caregivers too.. maintain your mind body and soul.. They will all be called on.. Hope springs eternal.. Don’t carry the world on your shoulders.. All we can do is to give it our best shot..Hitting this thing as hard as possible initially is our best change of success.. nothing easy or simple about it...Much love to you and your husband. I’m Scott my wife is Shahrnoosh.. she’s my savior.. without her I would not have made it.. I am not worried about your husband.? Because he has you.. Patience & Love are needed ...Take care

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Lulu700,

I too have had and still have intravenous vitamin C infusions. How many milligrams of C and over what length of time is it infused? I have had chelation therapy as well. After 5 MRIs my gadolinium level was 23X the expected high reference level. Two years ago I had weekly Artesunate infusions prior to the IV C for 3 months. Interesting link about that and at that time there was a conference about the use of IV Artesunate to treat cancer that I believe was in Baltimore. My PSA didn't change so after 3 months my doctor stopped the Artesunate infusions prior to the IV C infusions.

Anti-Cancer Infusions | Medic Debate

medicdebate.org/node/1038

I also do a sort of hyperbaric training with LIVE O2 sessions.

On another site with a prostate cancer thread one of the men wrote about his experience with hyperthermia treatment. His cancer came back. Because of the heat his urethra had been exposed to he said his urologist was unsure if a prostatectomy was possible, sort of like when those tissues are exposed to radiation. What has happened since then I do not know but he had contact with some other men who had the same treatment all with the same results as he except for the man who had a Gleason 6. When I read about hyperthermia I was ready to pack bag and take my passport out of the desk! After finding out more about it I decided against hyperthermia. I knew someone who had advanced lung cancer who did go for hyperthermia. He only lived a few months after the treatment. His cancer was advanced and one of the deadliest, lung cancer.

Currumpaw

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During the last consultation with my RO, he mentioned that he saw one patient who had a drastic rise in the number of metastases all over the body after the radiation, which was very surprising. The patient told him he did mistletoe therapy. This is just one case but my RO would warn every patient to have mistletoe therapy.

You could use Bicalutamid as hormone therapy. This does not have so many side effects as Lupron but keeps the PSA value low as well. Its no standard treatment.

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oh, really! Do you know which sort of mistletoe therapy? IV or injections, if you get to know, please give me an update!

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I guess my concern is you stated your husband had high grade stenosis--what do you consider high grade and why not have cardiac cath and stenting if possible?? After that, concerns regarding ADT including some of the other drugs like zytiga go down... Just a thought, but my concern is you may be worrying about the cancer and he could die of an MI...If the stenosis involves his LAD, then it is a greater concern....they don't call the LAD "the widowmaker" for nothing...occlusions there result in a higher incidence of death...

Fish

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He could get stents, yes, but the point is the stents would not give me that much help, because they do not reduce the frequency of new heart attacks or prolong survival except in small subsets of patients. So we are trying to follow Dr. Esselstyn. Admittedly in the midst of a heart attack a stent or bypass may be live saving, however, for the remaining 90% studies confirm that they do not prevent future heart attacks or prolong life.

He has spotty calcium, for that stents cannot help, they are quite dangerous.

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STAMPEDE recently showed a benefit to prostate radiation when there are few mets. Consider whole pelvic plus SBRT to the bone mets. Early mets often do not grow until they are ready to (which is why no one knows if metastasis-directed therapy accomplishes anything). Also, talk to his oncologist and cardiologist about alternative ADT (anti-androgen, estrogen patches).

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The question is what are a few? Because PSMA shows many mini spots to bones. Now, would radiation be an idea just to anticipate problems when main tumor grows and pressure bladder etc?

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3 or fewer is what they used in STAMPEDE. If he is having obstructive symptoms now, radiation will make it worse before it gets better. Antiandrogens will shrink his prostate.

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He has no symptoms at all, quite strange for the advancement.

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In the STAMPEDE trial they used 3 or fewer bone mets determined with a bone scan. If you see them with a PSMA PET/CT this is different. So I think radiation could help. On the other hand Dr. James said, he personally does not expect a different result if surgery would be done instead of radiation. But the trial did not test for that.

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I think you may be discussing the early use of radiotherapy arm of STAMPEDE.

The Abiraterone arm (arm G) didn’t have that limitation. I had 7 Mets, and joined arm G seven years ago.

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So you had Abiraterone for 7 years or did you stop after radiation? did you take other ADT? Did you have radiation to the mets as well?

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I’ve had neither radiotherapy or chemotherapy. Just Abiraterone, Prednisone and Zoladex for the last 7 years. PSA@dx 571, multiple Mets. PSA currently immeasurable.

No dietary changes, I eat red meat, fresh veg, fruit, alcohol two ar three times a week. No fish as I’m highly allergic.

No supplements either. Just started taking statins as research seems to see improvements in delaying CRPC.

I’m still working 4 hours a day, 5 days a week.

I have an extremely positive attitude to this.

By the way, see if you can find Dr Snuffy Myers comments on Cannabis Oil. He’s very much against it.

Recent research has also found it affects sperm DNA, which could lead to problems with children of fathers using cannabis.

“For a study published today in the journal Epigenetics, scientists at Duke University compared the sperm of two groups of rats: those who had been given tetrahydrocannabinol (THC), the psychoactive ingredient in cannabis, and those who had not. Then they compared the sperm of 24 human men who smoked marijuana weekly versus a control group who used marijuana no more than 10 times in their life and not at all in the past half-year. In both cases — rats and humans — marijuana changed how genes work in sperm cells.

In both rats and humans, the cannabis affected many different genes involved in two different pathways. (Think of pathways as another set of instructions, this time for regulating various bodily functions.) One is important for organs to reach full size, and one plays a role in cancer and suppressing tumors.

Before anyone loses their shit, this doesn't mean that any kid you conceive while THC is coursing through your body will be more likely to get cancer. A lot more research needs to be conducted before any firm conclusions can be drawn. As The Verge points out, there were no laboratory controls on how much THC was consumed by the test subjects. Additionally, the sample groups used were very small.

Still, the implications of enjoying a few tokes that the study suggest as pretty grim. It's a bit of scientific exploration that's likely worth keeping an eye on.”

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Myriammole,

My husband had Mistletoe infusions shortly after his diagnosis. He is now giving himself injections as maintenance and is up to 20mg. It’s usually an Anthroposophic doctor that has experience with Mistletoe, not homeopath practitioners.

Mistletoe is widely used in Germany and is not at all considered “quackery” there. My husband feels much better on “shot days” as his energy is great and his color with rosy cheeks comes back. We are not looking at it as a “magic bullet” by any means. It is QoL and feeling well enough to work and enjoy life.

My husband’s oncologist is well aware of complimentary medicine as they have a complimentary floor designated to make QoL primary for the patient. They offer many modalities for comfort and to ease the side effects of the drugs. My husband is doing multiple complimentary measures and it is helping him live life, we are grateful for these “outside the box” measures.

Also, my husband had to go off ADT because it brought to the surface CVD, which was considered mild at his first CT scan, 15-20 years down the road it may be a problem, we were told. (A good amount of PCa patients die from heart complications or events.)

He had one initial injection of firmagon and then two injections of Lupron and now CVD is severe within six months of treatment.

My husband also came up with cardiomyopathy and something else was thrown in the mix that I can’t remember just now...all new to us.

So, our lives are not only dealing with PCa but many cardio appointments and decisions to make, to cath or not to cath? that is the question. We are not fully on board because of the reason you stated, it won’t prevent a cardiac event. Of course docs are pushing cath and stents for him.

One woman said her husband had such severe (thick) plaque due to ADT that they couldn’t even cath her husband and he died three months later from congestive heart failure. Sigh.

For us to go back on ADT is a certainty of a cardiac event within a short amount of time. ADT did do the job in putting his cancer in a non active state, for this part of it, we are grateful.

We don’t know the future with PCa but ADT will not be a part of it.

Of course look at the surgery and other measures but

If you and your husband choose ADT for a very-short-time I would choose Firmagon over Lupron.

My husband is still on Zytiga, which I’m not happy with (heart side effects) but it is to keep his testosterone as low as it can be without adding Lupron back in the mix. His next appt. is Feb to see how Zytiga alone is working.

I’m not sure If any of this is helpful but I meant to be as such.

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Thanks a lot for all information, very helpful. I did know ADT is a problem for CVD, but thought only because it raises cholesterol and blood sugar, really did not know it could worsen CVD so quickly!!! Is he on aspirin, statins, metformin or berberine? Did you notice a big change in blood test very rapidly? Is he doing more sport to try to mitigate ADT side effects? Did symptoms of CVD arise after ADT? And Zytiga is better than lupron for CVD?

Would orchiectomy be an option, or is it also bad for CVD?

Yes, our doctor is a anthroposophic doctor with also a normal doctor degree. We are in Switzerland, where mistletoe injections is quite common, even paid by normal health insurance. 20mg is quite high dose, is it Iscador, does he take it every 2 days, no pauses, always same dose or the cycles? Great to know he is feeling better!! Any side effects?

For the cardio part: my husband did a low dose radiation heart CT, non invasive, which gives you a very good idea of the situation. My husband had after that an angiography and it did not show much more... the thing is when they do angiography they already are ready to insert the stents.

For us, the problem following Dr. Esselstyn is that it is a very strict diet very low in fat, no nuts, etc, and even being already in a quite WFPB vegan diet, the point is how to find a solution not to loose weight with such a diet (at least not being on ADT yet). You can always contact Dr. Esselstyn, he will give you an appointement for calling him.

We also have a lot of other supplements, and also cannabis oil in the mix.

Doing all to keep a good immunity system as far as possible. But as a stage 4 we must see what other options are there...

Did he do any radiation or would it be an option? Sorry for so many questions, but I found that we can learn a lot from each other! All the best!

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I only have time for a quick response at this time...I’ll try to answer your questions as best I can, maybe more tomorrow.

My husband’s Chosleterol levels are low normal, blood glucose is normal, his blood pressure is a little high at times but hovers at 130/79. He is not on statins, aspirin, metformin but is taking berberine.

When on ADT there was a big drop in PSA the first shot (firmagon), by the second shot his PSA was at 1.17, down from the original 144 at diagnosis. His cancer was dormant by the third shot, PSA 0.1 then the oncologist told us about the heart issues found in the CT SCAN and to find a cardiologist. He didn’t have symptoms of CVD before ADT and all of this came about after ADT.

I don’t know if Zytiga’s side efffects is part of the CVD or something else heart related. I need to research more on Zytiga. The cardiologist gave him a C-Calcium Score test (high radiation that we were not told about) and he had a high score, then a stress test, and ultrasound. So, they are recommending for him to have a cath and probably stents. One cardiologist mentioned a probable triple by-pass. Hmm...how do you do that to man with holes in his sternum?

Mistletoe — he takes it every three days or whenever the skin reaction subsides from the injection site. I think he is using Viscum and orders from Germany. He had flu-like side effects from the first infusions but none from the injections. It gives him a sense of well-being, energy, and restores his color. He did take one short break from the MT but is back on it. He worked up to the 20 mg as he was not getting a reaction from the lower dosage.

he’s on a therapeutic ketogenic diet which is opposite of a low-fat vegan diet. He eats only organic and no processed foods. He is on various supplements to get optimum levels. He was very low in D and had thyroid issues, anemia, etc at diagnosis so these levels are getting back in normal ranges now. He has added (from advice from doc) supplements for the cardiac issues. Cannabis was suggested to him by more than one doctor but he has yet to implement it in his protocol.

Again, I think all of this is complementary. Stage IV is palliative, so do what makes you feel better, for QoL. Everything he is doing is under a doctor’s care, we are not doing anything that his doctors don’t know about.

He has not had any radiation. I’m not fully informed about the orchiectomy, but I have read there is still a risk with cardiac events with very low testosterone. If an orchiectomy carries a much lower cardiac risk we will seriously think about it.

My husband is working full time, but more tired at night than he used to be.

I will research Dr. Esselstyn and see if that would be an option for our situation.

The best to you and your husband.

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Maybe you should rethink your ketogenic diet, surely not good for CVD. Dr Esselstyn is the only doctor who achieved reversal of CVD for very severe cases, please have a look!

Not sure high Calcium score can build up in 6 months, maybe he had already . Did he have after ADT CVD symptoms or you know it because of exams?

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The scan showed “mild” at diagnosis. Onco sent him to a cardiologist and the cardiologist told him this was part of aging and it was not going to be a problem for 15-20 years. Cardiologist released him as a patient. So, the oncologist and cardiolist decided to go ahead with ADT. We had no clue as to cardiac side effects.

His Keto high fat is primarily avocados, not fat in meats, dairy, etc.

All of his lipids are tested and none of it is out of range or even in the high normals. This is not the typical trending Keto diet.

academic.oup.com/jn/article...

“The ketogenic diet in this study resulted in favorable responses in fasting TAG, postprandial lipemia, HDL-C, LDL particle size, and insulin levels in healthy normolipidemic men. Although the duration of the diet was short (6 wk), these data suggest that a ketogenic diet does not have an adverse effect on accepted biochemical risk factors for CVD and improves those associated with syndrome X.” Although, my husband does not have syndrome X and further trials need to be conducted.

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Btw - some men die from or suffer a cardiac event within the first six months to year of beginning ADT. It’s in the literature.

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Well, that wasn’t short or quick.

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Zytiga:

“Cardiovascular

Very common (10% or more): Hot flush (up to 22.3%), hypertension (up to 21.6%)

Common (1% to 10%): Arrhythmia, chest pain/chest discomfort, angina pectoris, atrial fibrillation, tachycardia, myocardial infarction/ischemia, cardiac failure (e.g., congestive heart failure, left ventricular dysfunction, decreased ejection fraction)

Frequency not reported: QT prolongation[Ref]”

drugs.com/sfx/abiraterone-s...

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To the best of my knowledge, Abiraterone only works on the adrenal gland and it’s production of testosterone. Other ADT like Zoladex is required to cut off two pathways, and delay CRPC. I think it may be more complex than that, but in simplistic terms will do for now.

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We will have to look in to that. The oncologist wanted him to at least stay on the Zytiga to keep the T down, I think that’s what I remember him telling us. I could be wrong.

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"Mistletoe is widely used in Germany and is not at all considered “quackery” there. "

Mistletoe is not part of the guidelines in Germany and as far as I am aware very rarely used for prostate cancer. You can get it at special clinics for alternative medicine I guess if you ask for it.

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My understanding is that it was first used (I should have said more widely used in Germany than in the USA) by German physicians and used for multiple conditions. As I mentioned in my reply to Myriammole, my husband is not using it for “prostate cancer” but as complimentary medicine.

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We have been on a similar journey as you. We have remained 100% holistic until just this last December after 26 months of battling a known to be “aggressive” form of Pca (BRCA2).

Diet (primarily plant based Keto), exercise daily, detox daily (coffee enemas, full spectrum sauna), HUGE list of supplements rotated (mistletoe, probiotics & enzymes, Pectasol C, iodine, B vits, green tea extract, plus a dozen more), ozone insufflation, meditation, EFT (tapping), PEMF, and many more items.

We did 1 trip to Germany for Hyperthermia 2 years ago.

The ability to have NO SIDE EFFECTS and be empowered was top priority for us as a couple. Only a decision we could make for ourselves, quality over quantity.

We are now seeing an “Epigenetic specialist” and started XGeva & Lupron (only 1 month injections and not again until PSA rise). Because BRCA2 mutations are “smart cancer” and continuously figure out a way around what we are doing. Last test results showed the Circulating Tumor Cells dropped drastically to “undetectable”. So far, so good. But time will tell...

It’s a FULL time job and huge commitment choosing to go this route and many will quickly try to beat us down about how “stupid” we are not to choose surgery, radiation, etc.

But our doc told us day one, surgery would get out 85%, then he’d need radiation and hormones. We were turned down for HIFU, cyberknife, IBRT, etc. because of the spread and aggressiveness (12/12 cores G 8, lymph’s & bladder/urethra invasion)

So figured what do we have to lose?

I still to this day can’t see why anyone would do surgery and supply more blood flow to the area and ability of cancer stems cells to spread. But radiation or local treatments do make sense for some because you have to get ahead of the aggressive ones.

The non-aggressive form that won’t leave capsules won’t kill a man especially IF that heed the warning and make lifestyle changes.

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J-o-h-n <===<<< Totally confused... I think it's time for my two scoops of chocolate chip ice cream.

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 01/14/2019 5:13 PM EST

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If I didn’t do radiation and adt at the same time right off the bat . I wouldn’t be here today.. in addition to I did the naturalpathic as well.. I do 50 grams of C and it takes about one and a half hours ..

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