Advanced Prostate Cancer
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MyFightWithProstateCancer

I have been following several members and posting replies for a couple of months. HealthUnlocked has been very informative.

The following is my personal story: I was diagnosed in February 2016 with metastatic prostate cancer just two months prior to retirement. After my father passed away from prostate cancer in 1996, I started monitoring my PSA every year. The PSA gradually rose from ~1 to 3.75 ng/ml in 2015. The threshold for action according to published guidelines is 4 ng/ml and annual DRE’s, which I religiously adopted. In 2016 the PSA registered at 18 ng/ml, which was initially thought to be a testing error. Repeat testing showed that it was climbing fast and in a few weeks it was close to 28 ng/ml. I suspect that the family doctor may not have been proficient in performing the DRE, hence the sudden change in PSA concentration. I was put on bicalutamide initially for two weeks and then Lupron (leuprolide) as part of the ADT regimen. I went through a course of chemotherapy with docetaxel (aka, Taxatere) and about a year after the initial diagnosis also underwent 5 SBRT treatments at 7 Gy to the prostate, because of age and lack of comorbidities. I have used various phytochemicals during ADT and radiation therapy as adjuvants. I do resistance and cardio exercises for more than hour each day. I am feeling healthy and energetic, but do suffer from hot flashes which seem to be declining with time. My PSA is presently trending around 0.2 ng/ml. Therapy with abiraterone or apalutamide has been postponed.

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A shame you never hit undetectable---ADT-3 as per Dr. Meyers may get you there. Just a thought.

Nalakrats

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The literature indicates that a nadir of 0.2 or less is good after chemo, so I may be there. After SBRT it went down to 0.16. We'll see.

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PC is usually not detected by a DRE. It sounds like no metastases have been detected, yet they gave you Taxotere? I hope the phytochemicals you took did not interfere with the radiation. Make sure you keep your doctors informed about the drugs you take on your own.

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The nonsense about supplements interfering with radiation has been thoroughly debunked.

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Perhaps you can show me where it has been debunked? My RO advises all patients against it and could obviously benefit from your greater knowledge.

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"Since the 1970s, 280 peer-reviewed in vitro and in vivo studies, including 50 human studies involving 8,521 patients, 5,081 of whom were given nutrients, have consistently shown that non-prescription antioxidants and other nutrients do not interfere with therapeutic modalities for cancer. Furthermore, they enhance the killing of therapeutic modalities for cancer, decrease their side effects, and protect normal tissue. In 15 human studies, 3,738 patients who took non-prescription antioxidants and other nutrients actually had increased survival.

(Altern Ther Health Med. 2007;13(1):22-28.)" (bold emphasis added)

drsimone.com/Antioxidants_P...

drsimone.com/SimoneVitWithC...

Dr. Simone treated Hubert Humphrey for cancer.

High-dose vitamin C makes cancer treatment more effective, trial shows

medicalnewstoday.com/articl...

Vitamin C prevents radiation damage

orthomolecular.org/resource...

"In a study published in Cancer Cell, scientists say that giving people high doses of vitamin C during treatment may weaken cancer cells and make them more vulnerable to the effects of chemotherapy and radiation."

time.com/4718630/vitamin-c-...

the study:

cell.com/cancer-cell/fullte...

That took me all of 30 seconds with a search tool. I have dozens of articles I've downloaded over the years. The story is always the same. Ignorant ROs, MOs, and uros hypothesize and tell scare stories to their patients. Scientists who actually check find exactly the opposite.

You could try showing those articles to your RO, but it probably won't do any good. You can lead an ignoramus to knowledge, but you can't make him think.

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You and the consensus of medical professionals have very different notions of what constitutes medical evidence. I suggest you learn more about the subject - you may actually find it interesting. When you quote the opinions of random persons drawn from the internet - it is NOT evidence of any kind. The minimal requirement is publication in a respected peer-reviewed journal. Otherwise, you are just repeating personal biases - and possibly endangering patients thereby.

High doses of ascorbic acid - given INTRAVENOUSLY - may have the opposite effect from doses given by mouth. This is a HYPOTHESIS being explored in clinical trials. In other words, taking Vitamin C orally interferes with the generation of ROS because it is an anti-oxidant. Intravenously, it acts as a pro-oxidant and may promote ROS. Anyone taking oral supplements must avoid anti-oxidants because they directly interfere with the biochemical processes (ROS generation) by which radiation and the immune system kill cancer.

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Allen,

I had Robotic Radiosurgery aka Cyberknife on 2 bone mets found after PSMA PET CT at a PSA=0.7

I drink ginger juice(homemade) every morning. Could that natural antioxidant interact with my radiation.

Thanks

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No worries. When we intake food and drink, our bodies are really very good at taking what they need and excreting the rest. It's only when we overload our bodies' natural intake system with hyper-concentrated supplements (which are drugs!) that we may interfere with our biochemical processes.

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Thanks Allen.

I know you are promoter of systemic therapy after appearance of metastasis. I too think that it is correct. Done 2 18F PSMA PET with in 8 months,the second while on ADT just to make sure that my fluctuating PSA from 0.003 to 0.008 was reliable. The result was excellent therapy response: faint PSMA uptake in pelvis acetabulum and no more uptake in T5.no new mets.

I had MDT with Cyberknife 2 weeks ago based on the first findings.

19Gy..pelvis(1fraction),30 Gy T5(3 fractions 3×10)..….3 days all.

RO recommends no more ADT and watching PSA.

What do you think Allen? Any studies?

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There's no question that radiation to detected mets will provide excellent LOCAL response (that is, the irradiated mets will shrink and PSA from them will go down). I don't know if there is any survival benefit - no one knows. I do think that if there are just one or two mets and they are in a safe place for radiation, I can't think of any reason not to - especially if they're in weight-bearing bones. Here's the latest study i've seen on the subject - more questions than answers for now.

pcnrv.blogspot.com/2017/12/...

Yes, I do advocate systemic therapy after metastases have been detected. I think it is important to treat the whole disease and not just to have the goal of reducing PSA due to detectable metastases. I explained this further here:

pcnrv.blogspot.com/2017/05/...

But I also recognize that sometimes it's nice to have a break from all the medication, so as to feel more like yourself for at least a while.

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Thanks Allen. Great links .very helpful.wish you well.

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Today I was told that my PSA >.002 is considered undetectable !, Yours is considered the same.i,think?. Whoohoo! We’ve achieved the goal . I have no T either...I used to say “ Man Up”! ... now it’s “ Man Down “! Or man overboard!” What the hell! We’re all livin the dream of survival ! One day at a time...... .003 to .008 is very good. Continued good life to you..

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Great news Lulu.I like your attitude. That is a good way to fight this disease.prayers for all of us.

P.S..isn't it <0.002.if it's >0.002 they have to write the real no....0.003,0.004..etc

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IYes, you are correct my mistake. My point was that your PSA is super low.. and that’s good.

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Your viewpoint .

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No way . I ate fresh raw organic ginger, turmeric and garlic everyday of RT. Still,do .. Don’t stop believing in natural remedies most do something beneficial . The chief of onc radiation stopped me 3/4 ways true tratment because I was eating so much turmeric that I was a little orange and they thought I had jondous.. Bitter melon was another one that I ate a lot of during RT. I don’t have an agenda to push.. My personal experience only. My opinion. Stay happy in the eye of the storm ..anyone can be happy with good news it takes inner strength to get thru these storms that APC present us. I pray that I can build up so if called back to chemo or whatever I’ll be able to take it if I so choose... if one gets a clear light don’t waste any of those precious days that are given ...Celebrate the gifts around us.

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It will only help.

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To Tall_Allen ,I respect your deep knowledge and opinions. On this one I totally disagree and so do all naturalpathic practitioners world wide. Including Chinese medicine that you might like to,demerit also? You have your beliefs. So do I. Doesn’t mean others are wrong for having different viewpoints .. I’m not the scientist that you are. I don’t have the vast medical knowledge that you possess. You share that with us all Thank you...But I’ll do just about anything that makes common sense to me as laymen .. to live better with APC.. Sometimes we can just agree to disagree with much respect Sir...

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"Common sense" won't make a medicine safe or effective. Cancer will outsmart your "common sense" every time. "Viewpoints" and "beliefs", as you put it, have no place in medical science. If you have a viewpoint that conflicts with the proven science, you ARE wrong - that's exactly what being wrong means. If you want to overturn the proven science, you have to PROVE you're right - beliefs don't cut it. A drug/supplement either works or it doesn't, it's toxic or it's not. A few people on this site have very mistaken notions about human biochemistry and the natural history of prostate cancer progression. Of course you're free to put whatever you like in your own body (and I've seen some pretty weird stuff in my short time on this site). But I will speak up when I see drug pushers pushing substances that may be unsafe. (Actually some are so ridiculous, I can't believe even the most gullible patient believes it, so I just ignore it).

I think Chinese medicine and Ayurvedic medicine have a lot to offer. But all medicines must meet the same level of proof. I've read many studies from China and India exploring the ingredients in traditional medicines. But until there are randomized clinical trials proving safety and efficacy, patients are taking a risk in using them.

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Bull tall_allen , Nothing will outsmart my beliefs. You think that you can outsmart APC. .? Good luck with that. Sometimes it’s better to be lucky than smart. That’s my story and I’m sticking to it.I have no problem with you personally but I’m commenting to tone down putting others beliefs down .It does neither party good. Have a nice day 🤙🏽 “Educating the mind without educating the heart is no education at all.” Aristotle

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I said the opposite... You wrote: "But I’ll do just about anything that makes common sense to me as laymen" and I responded "Cancer will outsmart your "common sense" every time."

Because I don't believe that anyone is helped by magical thinking, I demand evidence. If you want to take drugs based on your intuitions and beliefs, that's certainly your prerogative. I will only get involved when you try to foist your BELIEFS on others and present them as facts.

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Just the facts mam, please? Foist , haven’t heard that one in awhile. Good luck helping others . Oh sorry , I forgot you don’t belive in luck either. You will be happy to be receiving no further replies from moi. Addios jefe!

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Food is the best drug..

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I was talking about nutrients and diet that I’m on did not interfere with Rt or adt. I’m a statistic of one.. never been a conformist. Or a follower to a completely scientific approach to life . That’s emptiness .

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The science of APC is terrible and boring . Dwell on it all that you want You can’t change it. Believing in only self... How is that working out for you ..???

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The science of APC is what it is. We can accept it and try to work with it, or you can believe in magic. The choice is yours.

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If you don’t believe in magic you will never recieve a miracle...

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I'll put my faith in medical science for my body, and in God for my soul. You can keep your magic.

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Good man, keep faith in god..

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When someone invokes consensus, I know they have nothing to argue. My post linked to a paper citing 280 peer-reviewed studies.

Science is the belief in the ignorance of the experts

Richard Feynman

Historically, the claim of consensus has been the first refuge of scoundrels; it is a way to avoid debate by claiming that the matter is already settled.

Michael Crichton

“If you thought that science was certain – well, that is just an error on your part.”

Richard Feynman

Feynman sums it up in one minute:

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Consensus is important in medical science. All major organizations dealing with prostate cancer write consensus opinions that determine the standard of care: AUA, ASTRO,ISUP, ASCO, NCCN, etc. Even FDA approval of medicines is by consensus.

Here's an article you that may make you upset about standards of care:

pcnrv.blogspot.com/2016/08/...

If you've relied on Gleason score, stage, PSA kinetics, mpMRIs, biomarkers, risk stratification, treatment protocols, or shared decision making, you've relied on consensus. The statistics we rely on for proving safety and efficacy are based on consensus - power for determining sample size and confidence intervals, especially.

To take it outside of medicine, climate change is by consensus. 97% of climate scientists agreed that the proof was sufficient that it is man-made. What of the 3%? Well, the burden of proof then falls upon them to disprove the consensus opinion. Until they do, we act assuming the consensus opinion is true.

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Thanks FCoffey! science is the belief in the ignorance of the experts. Made my day. Fantastic quotes!!

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C o n s e n s e This! Hilarious stuff. Thanks ! FC

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I loved high C iV’s... got me thru a tuff time. For someone who (has) done it. Not just read about it.

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As a 12 year survivor of high grade ,widespread metastatic at dx APc, I feel I have made it to the far right tail of the survival curve. Throughout I have taken only vit D, when needed and Calcium with any regularity. Currently I am taking broccomax after reading the study. I think it is very important if self medicating with various supplements make sure to run them by your MO so as not to have a negative effect when mixed with cancer drugs. In the words of my 90 year old Mom, “Just do what the Dr. says”. I am 100% with Tall on this topic. I find it offensive that you would call anyone that does not believe you an ignoramus.

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I missed the ignoramus comment.. That’s no cool.

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Amen!

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I debunked it myself.. I did tons of nutrients and mega doses of c & b’s I v’s DMSO ,during radiation although the Drs said no . I credit that early dosing and complete no sugar plant based diet to a current good status I follow a naturalpathic onocologist Dr . Michael Uzick in Tucson Az. I credit him for saving me.. The urologist said “ eat what you want, it doesn’t matter”. Along with fasting during RT in addition to adt I became clear 4months after RT. My test all are clear still after over 2yrs..as of yesterday’s annual test results. I also have done RSO from the onset.. most don’t believe in that either..I am no better then any one else but I’ve done much to correct my chemistry. I have no visible signs of PC and an undetectable Psa.. no cure for stage #4 APC is what they say.. my dr. Yesterday jovially said I’m cured, he’s so happy. I’m on everything until things change. Although it’s fantastic to the spirit to hear no cancer to be seen.I also have had no T >3 and Psa>.002 for 3yrs that as we all know is a daily hurrdle for most of us. so I live with all of the side effects , that we all have...but ( I LIVE). plus impending ly challenged urology Its a battle to regain the muscle strength stamina and cognition that I’ve lost .. I had 2lymph nodes lit up in pelvis, pc tumors blocking urethra on bladder and thruout pelvis .In the last month I’ve has severe to dull pain in my abdomine especially an indentation below my belly button this is the site of targeted RT max dose. 5per week for 2months. It feels like being Apple cored from the front thru the prostate and back painfully into,my anus.. I’ve been thinking “ oh God.” It’s mets.. Dr. Said that it’s fibrosis like scar tissue from where RT killed all of those pc cells.. so I have that but better than having the pc eating me.. up.. we really can never say that we are out of the woods. My prayers are to all that are new. You can do much to improve your outcome.. To those in dire straits suffering pain and the anxiety of our initial horror fears and life leveling health issues and to those in end stage conditions. I’m praying constantly for all of you. If one line of this helps someone. I’m happy. Please forgive the rant. The great people here on HL have greatly advanced my view of APC . I’ve found more friendship and compassionate help here then any where else.. Grattitude is overwhelming me.. I Thank God for Mercy !, May everyone find a peaceful path thru the APC maze and beyond! much thanks to everyone on HL.. God Bless those that are suffering? Scott. 🌵🙏

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Gentlemen, I reviewed the literature carefully to make sure that the phytochemicals would not affect chemo and rad therapy. According to the literature, the phytochemicals made good adjuvants for both types of therapies (or at least were not harmful). The oncologists were worried about bleeding, but I had no adverse events. Cheers, Phil

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Be careful of the so-called "literature" you review. There's a lot of misinformation on the internet.

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I agree. I have found many contradictory reports. Most of my searches are via PubMed and most of the publications there are respectable.

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Tall_--you need to find another horse to beat.

Nalakrats

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Pot kettle black

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On the other hand the tried and true is sometimes proven on human guineas with not so good results either at first. Some of the things they use today are archaic such as 12 needle biopsies. I agree that you have to put your faith in something but as you say be careful. The research continues to uncover new discoveries. Hopefully we can be the benefactors.

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Why would you say that a 12 needle biopsy is archaic?

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Yes. I did not enjoy mine. It was like having an angry bumblebee up my bum. Circulating cancer cells have a lot of promise and may replace this archaic diagnostic method along with MRIs. It will take time to be accepted, though.

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I would think that cancer cells would only be circulating somewhat late in the disease progression, no?

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It has been used for so many years and does not find all the cancer,also it cannot reach the front of the prostate so you cannot tell what is there either. Invasive and can cause side effects. This is an outdated procedure. We should demand better with all the money that has been spent on cancer research. Imaging is getting better all the time so it could take over soon.

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Side effects? Like embarrassment?

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I’m with you Rocket09. !!

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Nal,

you are a supplement guy and like me probably take most hoping they help but not positive. My biggest problem from the supplements is stomach upset.....I go through 5 bottles of pepto bismol a week

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Try one teaspoon of Sodium Bicarbonate in 4 ounces of water.

Nalakrats

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I found a few references that might support this, but it is not mainstream or commonly referenced. It would be contraindicated in patients with high blood pressure. Do you follow this regimen? Cheers, Phil

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Reference is to belief the Sodium would raise blood pressure---BS, if you are on a good Calcium/Magnesium Supplement. Yes I use it--I rarely get an upset---maybe once a month.

Nalakrats

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And what do you think original Alka -Seltzer was made of?

Nalakrats

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Good points. Thanks. There is limited research on alkalinization. More bedtime reading...

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All of the girls are models on line....

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My DRE did detect an abnormal firmness on one side which got me sent to a urologist for a biopsy. Gleason 8. Bone and CT scans clear. I thank my lucky stars for that DRE. I don't know why you would disparage DRE's. Oh, and my PSA at time of diagnosis? A very unremarkable 2.7. My PSA score would NOT have steered me towards a biopsy.

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What I wrote was "PC is usually not detected by a DRE" and that is very true. Most DREs (92.5%) are stage T1c - nothing felt on DRE. Most of the rest are stage T2a - a small lump (often benign). DREs only detected 2% of significant PC that was not detected by PSA.

tandfonline.com/doi/abs/10....

Only 59% of men with PC will have a positive DRE - so a lot of men who should have a biopsy would go undetected because of it. And a positive DRE will correctly predict PC in only 28% of men -- so a lot of men would be sent to unnecessary biopsies because of it.

academic.oup.com/fampra/art...

"Firmness" is usually due to prostatitis, and is a better indicator of prostatitis than PC. There is also huge inter-examiner variability - many doctors are just not very good or thorough.

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If I am in the 2% for whom a DRE got me on the road to treatment then I guess I am lucky. PSA has been disparaged as a diagnostic tool, and now they are keen to disparage DRE as a diagnostic tool. It is no accident that more men are being diagnosed late stage these days. I think it is flat wrong to discourage men from the DRE screening. I'll bet there are plenty of men on this forum who wished they had been screened this way, in the off chance of uncovering the disease early in the progression, rather than only when they are symptomatic and metastatic. Again, without that DRE this disease would still be cooking, untreated, within me so I won't hear of the DRE as being a worthless screening test. Opinion of one, and maybe not sanctioned by the great medical thinkers, but they can take their opinions and shove it you know where.

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I’m with ya. WSOPeddie.

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Reading this is upsetting and confirms what I have been harboring inside in terms of my husband's physician failure to escalate things further when my husband's PSA was 7 for over one year! At which point should a general practitioner physician blow the whistle and refer someone like my husband to a biopsy knowing that as a black man he's more prone to PC?!

Wouldn't that constitute poor judgment? My husband PC was diagnosed in December 2017 but upon scrutinizing his medical record, he had an elevated PSA for well over 2 years before the doctor finally referred him for a biopsy this December.

Kaiser really dropped the ball (well that particular physician). It seems to me that when his PSA reached 4, two years ago, he should have been referred at that time when the cancer was low-risk.

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I have a similar bad story in which I felt wronged by dr. I can only blame myself for my #4 , I knew I had problems for years and did nothing. Move on . We learn and don’t look back. 3rd cause of death in u s medical errors. They are human.. thus flawed like the rest of us... I agree with your thoughts. Especially I can relate to catching it way late. But just keep him here in the present with love.. He’s got you babe!! Good looking out for your husband.. God Bless

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My first and only Dre , revealed a “ gigantic prostate”. I new I was screwed, went into k failure awaiting biopsy which didn’t come until I had tubes nd a foley. First day out of hospital they had my dx . I kinda already new at this hat point.

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Hello Tall Allen, CAT and bone scans confirmed metastases on the bones. Not visceral mets so far.

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PSA and DRE are the recommended tests to monitor the prostate. Over 4 ng/ml or size, hardness or lumpiness on the prostate are indicators of cancer. I believe family doctor did not perform the DRE properly.

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May happen as they are not perfect.. The more that we re around the medical field the more mistakes we will see. All that matters is what you do now.. best wishes..

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Thanks - that explains the Taxotere. How would you have gotten apalutamide - on a clinical trial?

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I’m also leaning towards TA’s here. You need more solid evidence to back up claims about supplements. I do think if it’s published in and by credible sources, it’s worth pursuing. Peer review is going on far less than we’d like to see. It’s publish or perish paradigm in almost all scientific fields (with a few exceptions), and peer review gets you nowhere.

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I agree, but I have found useful information out there. I have found some poor papers and very good to excellent papers. I can manage the clinical trial papers and research on the biochemical mechanisms, but the immune system and immunotherapy papers are sometimes exceedingly difficult to understand.

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I like it!

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I went on Lucrin ADT Jan 2014 with PCa outside the capsule and in the pelvic lymph nodes. My PSA was below 1 for 2 years then started climbing. Had EBRT Oct 2016 but PSA then climbed at an increasing rate peaking at 72 in Dec 2017. Zytiga has dropped this dramatically to 6 now. I read all the posts on HealthUnlocked to see how others are progressing. The prognosis is so scattered that it appears to be a lottery. I have extensive mets but no pain. There are many treatment options left and more in the pipeline so am just enjoying life and not worrying.

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You’ve got it right brother. Good attitude. I believe APC and treatments are a crap shoot. No guarantees on any treatment. APC = casino..

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Yep timing stinks. Mine was two weeks before my 66 th birthday , they put me on Effexor for my hot flashes . Hang in there and keep up the fight

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I have found that the hot flashes have been diminishing somewhat lately. Reducing anxiety, strenuous exercise, keeping the temperature of the house lower appears to help. I have been wondering whether the phytochemicals help as well - need to look into this more.

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Go for natural stuff also. Especially because of the glorious treatments .

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Happy birthday it was? Good news is you’ll have another birthday or many hopefully. Take care.

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j-o-h-n <==<<< Looks around, shakes head and continues to beat wife, Oh what joy!

A problem "she's getting to like it"....

Good Luck and Good Health.

j-o-h-n Monday 04/30/2018 1:37 PM EDT

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Let the beatings continue until morale improves !

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What do you say to a wife with a black eye?

Nothing, you've said enough.

Good Luck and Good Health.

j-o-h-n Wednesday 05/02/2018 5:30 PM ED

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A man should never hit a woman ...we know that..

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Half in jest whole in earnest.🖤 <===<<< black heart LOL

Good Luck and Good Health.

j-o-h-n Wednesday 05/03/2018 10:55 AM ED

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I’m the black sheep of my family....I’m just glad my wife doesn’t beat my arsh.....I deserve it sometimes.

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You can say that again!

Good Luck and Good Health.

j-o-h-n Friday 05/04/2018 4:49 PM EDT

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