Hi I’m Paul and I’m new to this site. I have stage 4 metastatic prostate cancer and have been through every treatment possible. They have included syberknife, xytegia, xtandi,taxotere,xofigo,and now cabazitnxel(jevtana) with carboplatin. I don’t know if there is anything else that can be done. Is there any one else out there in the same situation and if so what are you doing? I’ve heard about a new drug called lititium 177 and wonder if there is any one else that might be in the trial and how it is going.
Metastatic prostate cancer - Advanced Prostate...
Metastatic prostate cancer
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Casper3
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The big trial of Lu-177-PSMA-617 is no longer recruiting. There are a couple of trials using different ligands or combining with Keytruda. If carboplatin worked, you may be interested in a trial of a PARP inhibitor.
Do u know when the results of the trial will be published ? FDA approval ?
The primary completion date for the VISION trial is August 2020. If the FDA accepts and it is fast-tracked for approval, it will be about 9 months after they submit the data.
It will help people to give you good information if you can provide information about the timeline and details of your condition, including Gleason score, primary treatment, PSADT, where number and where mets are located, time to biochemical recurrence from primary treatment and sequence and length of each treatment so far.
I was looking for 3 basic things in your post that are not there
1. A recent PSA history - this tells you how quickly you need to act.
2. That you had found the cause of the cancer and you had stopped doing whatever it was - it is usually something under your control.
3. How your diet and lifestyle changes are going to get your immune system working. With all that lot that has been thrown at you, you can assume your immune system (which is what actually kills the cancer - not the medications) is in very bad shape and the place to start an urgent repair job.
There are hundreds of things you can do. Get reading to find out about them - the many little things that all help. Lu177 is one of them, but if you have to pay for it (or wait too long) that could rule it out for you. You have made a post here - that is going to be a big help to you in turning your life around. Hundreds of us have been down a similar path before you, and we are still going.
TNCanuck in reply to
David, please expand on your remarks in #2 above. You seem to be implying that the cause of PCa can always be pin-pointed and that it's preventable.
in reply to TNCanuck
Yes - in most cases it can be. A common profile of Pca waiting to happen (remember it starts years before it becomes obvious) is over-weight, untreated Diabetes Type 2, junk food, excess sugar intake, poor sleeping habits, stress, low exercise, Vit D3 shortage, mineral shortages. That is before we add environmental poisons over which we have much less control, but we can read the labels and avoid many of them - like "hidden" sugars and guaranteed doses of known carcinogens in all GMO grains (the grains are fine - it's what is in them that is the problem). If you live in the USA, you have likely had a good dose of carcinogens by the time you have finished breakfast.
All these things will grind down the immune system and it slowly fails to control the cancer growth which has been there long before it becomes obvious. It will already be throughout the body (Stage IV) with hundreds of unseen metastasis (only a few of which will grow to visible proportions). That is why "cut and burn" does not "get it all".
The point I was making is that there is no point trying to "cure" the cancer if the causes are still there that continue to make more of it. It will keep coming back.
The good news is that many thousands of people "cure" their cancer simply by doing a radical change of life style and get onto a proper diet. The "repaired" immune system will start killing more cancer and often get it back under control and "remission".
Even if going the medical route, it still makes sense to get the immune system working as best as possible. That is not easy, as all medicines are poisons and reduce the immune system's abilities to kill cancer cells - at a guess the typical patient has 50% of his immune system left working. If you can boost that to 60%, you are going to get a much better outcome in the form of longer survival.
The bad news is that once you start down the medical route, the chances of getting "out of the hole" to join the "good news" people (above) are very slim. But many do get there by sheer determination and keeping to a very narrow path.
jfoesq in reply to
David- Sounds like a lot of BS to me. Can you site and medically recognized studies supporting your claims. about sugar, GMO foods..... My father was diagnosed at age 60. (Fortunately- his was caught early and he lived to 90 yrs.)
I am told the next generation is usually diagnosed at an earlier age. I was diagnosed at 54 and 2 of my 3 brothers were diagnosed at 59 and 61. Fortunately- and partially due to my dx, my brothers were dx at an early stage and both of them seem to be in good health 7 yrs later. None of us were overweight. None of us had diabetes. My brothers and I were very active and in good health when diagnosed. Our diets differed, but one of my brothers had an excellent diet. We were never dx with vitamin or mineral deficiencies. I have confident that a healthy diet and exercise can be helpful in preventing all sorts of illnesses and diseases, but let's not forget about our genes and DNA makeup.
in reply to jfoesq
So you didn't get cancer because you ate no sugar, ate no GMO products, ate no processed meat, ate no junk food, lived in a pristine lead, mercury and BPA free artificial atmosphere, so it just had to be bad genes? You are unlucky guys in your DNA Gene pool that get Pca early and also get the luck to detect it early.
The 95% rest of us got Pca because of our eating habits, lifestyle and a failed immune system. I said "most", not "all", and "common" profile. You can be skinny and fit, but if you overload your immune systems you will get sick. If you are fat (that's 65% of us now - see "common"), the overload will come sooner. Conversely, if you can maintain a strong immune system, there is a good chance the body will heal itself.
While people continue to think that they can abuse their body machines and ignore the environmental impact of pollutants and eat poisoned foods, that 50% cancer rate (in the West) will continue to climb, and they will continue to get sick and die younger. (USA male life expectancy has slipped to 76 going down - 31 nations have men living longer. US medical rates 43rd in the world - also going down - even though it is the most expensive.)
Even if you are in that 5% where genes do seem to play a part, looking after the body can alleviate most of that problem and add a few years. Getting fat and eating rubbish will put you with the other 95%.
So - if you have a better idea why cancer has become a major killer in the last few years (and growing fast), the world awaits your wisdom.
jfoesq in reply to
I guess that means you have no scientific studies you can site to support your conclusions
in reply to jfoesq
I am not going to spend hours listing all the trials and evidence that I have spent years reading and gathering some knowledge on this vast subject. Much of it turns out to be common sense and obvious. I make these posts to speed up that process for members of this forum. Many of them need good information today, because tomorrow they face their doctor and they may need to educate their doctor, ask awkward questions, and make life (and quality of life) and death decisions with fractional information.
The "Eat whatever you like!" guy is a doctor to avoid because he is too far behind the learning curve.
It's your choice to live out your life as you want to. Perhaps you would like to spend a few years to prove all the stuff I am saying is BS? Others have done just that and become converts to reality.
Most of us want to know how to add a few months or years, and if we apply the basic info on how to boost the immune system and what to avoid, we do just that.
in reply to
I agree with you about the “ eat whatever you want guy .” There is a clear division on this cite about diet and nutrition . I’m with you on all of this . Half of the cite not . we ‘ve had contentious arguments on nutrition . I say each to there own . Many older men will not change their diet . I was just 53 and deemed it mandatory .. Take care
in reply to
Hidden, I agree with you, but your on the wrong site for these kind of truths.
in reply to
The straight and narrow...
Casper3 in reply to
My PSA dropped from 5.5 just before my initial treatment in December of 2015 to 0.6 in March of2016. And it stayed down till June of 2017 when it got to 3.5. In December of 2017 it had shot up to 20.0. In February of 2018 i started on zytiga and got down to 0.13 by May of 2018. It started to go back up and it was taken every month and going up slowly. In December of 2018 went through 4 months of chemo and then 3 rounds of xofigo. In June of 2019 i started back up on chemo.In May of 2019 it started doubling, going from 147.30 and continuing to June 2019 when it got to759.46. That’s kind of my PSA history. My last treatment 2 weeks ago they added carboplatin to my chemo and i will see what my numbers are the 4th of October. I don’t know what the source of my PC was but I did get a genetic test and it said it wasn’t family related and was probably environmental. I have changed my diet and am trying to eat more healthy.
You mentioned about buying the LU 177. Is there any place to do that?
in reply to Casper3
Ouch! Your history is not typical, but that PSA needs to be brought down without delay. All that chemo will have half killed you. "Eating better" is not going to cut it. You need to get onto a strict raw food diet, raw fruit, nuts etc. Read about this. That means (at least for a while) zero sugar, zero wheat products, zero from a bottle, box, or can. Do your shopping in the fresh produce section. I would suggest zero meat (a tiny amount of quality fish may be OK), and an egg or two that gets cooked. If you can get organic, pay the extra. Zero processed meat (it is all carcinogenic). Smoothies should be your base food for a while so you get 8 small meals a day - carrots, apples, oranges, beet, celery, broccoli. cabbage. watercress, green leaves, raw nuts, and any other "good stuff" going, Sweet potato (raw is OK), butternut, and steamed part-cooked broccoli OK. Avoid dairy for a while. Introduce raw cold rolled oats after a while for breakfast. etc etc - read about it. To that you will need to add missing minerals like Zinc, Magnesium, Chromium, Selenium (3 tabs per day for a while), Vit D3 (5000 iu or more), Omega 3 and 6. No Vitamin E (the artificial one feeds cancer so "Multi-vitamins" are out). B12 and Folic. It is a big subject - plenty of good material on the Internet.
Even with a "proper" diet and lifestyle, it will take your body many months to recover and get on top of all that cancer. It takes the body years to start working properly again after "full" chemo, so it will need a lot of help. ADT is usually the "base" treatment, and blockers like Xtandi would usually be the next step (not chemo). You could try Sodium Ascorbate (50 grams every 4 days via IV) as that should knock the cancer down quickly (I used it with Xtandi when in a similar precarious position and that dropped the PSA by 95% in 4 weeks). You have to experiment to see what works for you. The mistake your team made was not using combinations that work better and do not cause such damage - e.g. 10% of usual Docetaxel + 25 gms Ascorbate. "Sledgehammer" doses of chemo are now an outdated concept, and the Oncos that do not do this prove the point with far better outcomes and "less damaged" patients.
Lu177 may be a good idea if the above (which is not a full list of what you can try) does not turn things around, but it needs your "brands" of mutations to have suitable receptors to hold the radioactive Lu177 in place so it can kill the cancer and not too many "good" cells (which it does anyway). The binding will determine how many "rounds" you need. I do not know the exact prices at the German clinics (see other posts) who do this if you cannot get onto a "home" scheme, but I think it is far less than the $170,000 price per treatment indicated elsewhere. I wish you good luck!
Casper3 in reply to
I didn’t go directly to chemo. After my treatment of bracetherapy and cyberknife quit working i went to a combo of zytiga and prednisone and Lupron shots. When that quit i went to xtandi and then to my first round of chemo (taxotore). After that i went to xofigo and then to my second round of chemo (jeftana). After 2 rounds they added carboplatin. I won’t know the results of that for about 2 weeks. So my doctor didn’t go directly to chemo. He went through the typical routines. I’m going to try your suggestions and see how well it works. I’m not sure I can follow it completely but I’m going to try. I’m going to bring the sodium ascorbate to my doctor and see what he thinks.
in reply to Casper3
Seems like your doc was trying! If you need a post of what to do I can do so - it is a simple and safe process to do an Ascorbate drip. After nearly 140 of them, I should know! If he mentions that 1978 Mayo trial of oral Vit C not working, you can shoot him down in flames for being 40 years behind. Google usually lists a few places with a "Vitamin IV near me" (which also lists quacks) if he will not do the right thing. I regard Dr James Forsyth of Reno as the best in the USA - he is my Plan E when I run out of other options.
Casper3 in reply to
Another quick note. When I was thinking about the source of my pc. I feel it may have come from my career but no way of being sure. I spent 32 years as an analytical chemist and worked with numerous hazardous chemicals. So it may or may not be the source.
in reply to Casper3
If you wrote down a list of 1000 possible causes, you would probably find a tick next to most of them. We never do find out. In your case a single forgotten heavy whiff of some "nasty" may have been the early trigger. With me it may have been paint solvents, formaldehyde and benzine (followed by overweight and sugar). But we can try and avoid those items in the future - an impossible task as we cannot escape polluted air for starters.
8 pills per day of PCSPES per day with 1 to 2mg. Diethylstilbestrol if the doctor will give it to you. It's the best resort for CRPC.
I'm on Zytiga plus prednisone. Stage 4 in bones, lymph nodes, just everywhere. Going on 2 years now..
Hi paul, Im same as you for 2 yeas now and going to try metformin with syrosingopine , Try researching these ... Terry
I'm new here, too. Looks like lots of helpful suggestions
LU177 is available in Europe and Australia. As is ACT225.
They will attack salivary glands and Kidneys. Losing your salivary glands is a lot worse than you might think.
Went to PCa conference last week. A key note was Lu-177. I asked about saliva gland issue. Speaker said that they have found a slight difference in PSMa in saliva glands and they working on a 'shield' to stop xerostomia. Dose reduction was NOT the way to go as Weill Cornell protocol suggests. Sadly, speaker left after immediately after Q & A session.
Learn anything else at the conference?
My dad was on zytiga and his cancer went into remission. Sadly he died of heart failure do to sepsis from an infection. There is hope. His was extremely aggressive and he was 76.
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