News From The Mayo Clinic

I Just got back from 5 days at The Mayo Clinic for my 2 year checkup. Over 2 years my PSA has gone from <.1 to .17. The MRI was negative and was scheduled for the Choline 11 Pet scan in two days. I was sweating it because even with a PSA of 0.17 you can be in real trouble. Turns out PCa tumors are heterogenic meaning they are comprised of cancer cells that make PSA and the far more aggressive cancer cells that don't produce PSA. They showed me scans of patients with PSA of .1 to 40 who were riddled with metastatic PCa because they had large amounts of PSA negative PCa. They had been monitoring their PCa with regular PSA tests and thought they were safe until they got symptoms, went for a scan and found out they were loaded with cancer or as they say lit up like a Christmas tree. You can't rely on PSA and have to get a scan at least every 2 years. I was lucky and the Choline 11 scan confirmed the MRI and gave the all clear. For what it is worth I asked about Provenge and Prostvac and was told they are both worthless.

Gus

51 Replies

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  • Hi Gus,

    Congrats! You're doing very well.

    Was the comment on Provenge fleshed out with any data? Because when Eric Small (UCSF) studied Provenge before FDA approval, it added somewhere between 4 & 5 months average added survival time for late stage guys, even though it doesn't affect PSA scores.

    And I'll bite: What's Prostvac? Thanks.

    Neal

  • Neal,

    Prostvac is an immune therapy in Phase III clinical trials at the NIH

    Gus

  • how old are you Gusgold?and if you did chemotherapy which drug was given.

  • Gus never tells his age--I think he is embarrassed.

    Nalakrats

  • Kg,

    I am 68 and have never done chemo and never will. I believe the future breakthrough will be an immune therapy that actually works for PCa, like the check point inhibitors. Chemo damages your immune system so that supplements or immune therapy will not work...this is just my opinion, I know plenty of guys up here believe dhemo saved their life.

    Gus

  • Leibowitz's chemo protocol enhances our immune system. I'm only a month into it so far, but have felt zero downsides so far despite taking none of the OTC stuff they suggest to prevent SEs ... no Benadryl, no Zantac, no Tylenol, no anti-nausea drugs. It's as though I'm not on any drugs ... but then its effect on my RBC, thus my energy, has not hit yet.

  • I'm also coming up 4- 17 on 2 yr test.

  • Gus, do you see any medical oncologists @ Mayo? I believe choline scans & Dr. Kwon are in Urology. Since becoming stage 4 metastatic 9n 2010 I've been dealing with Drs. Kohli and Dronca, who do offer Provenge for the survival benefit (2012). I also continue receiving Prostvac as part of my 3-year clinical trial at the NIH. If Mayo Clinic Urology is currently directing your treatment, what is their "protocol?" It seems the med onc division's is Lupron forever (& continuous) combined with other drugs sequentially as they fail.

  • RJ,

    Has the Prostvac been effective..I could get into the NIH trial if my PSA gets to .8. Dr. Kwon bills himself as a Professor of Immunology and he told me Prostvac is garbage. I see 4 Docs at Mayo and none believe in Lupron or ADT except as a last resort because of the side effects..they all want to go after the cancer and try and kill it.

    Gus

  • My people at the Levine Cancer Institute--have killing weapons---[they think]?--and one has had a 80% solid remission---meaning, that you still have cancer cells, but they cannot progress. Like having HIV--the drugs today, do not let the HIV progress to full blown AIDS.

    I asked for the drug---cannot get it until I am on my last legs--if I demand it--it is 15,000 per month---and I still do not know its name---still has a numerical number designation. Our Medical Protocols suck.

    Now if I want this drug--I have to go to the Dept. of State and make application---as I am in a right to use State[N.C.]--so I could force my doctor to give it to me--but the cost does not go away--still 15,000 a month. My Onc. tells me the un-named Drug co. spent 2 billion on this drug.

    And there are more in the pipeline. So I expect, we are getting close. Are you/we going to allow millions of men to die over the Emperor-ship of the drug companies, and FDA. Sooner or later Humanity, and humanness must prevail. When HIV drugs first became available---20 years ago--back then they were 100,000 a years--today not so much---where all can get it.

    Nalakrats

  • I know nothing about the efficacy of Prostvac-Tricom although I've received it quarterly for 3 years now (well, since May 2014). It is given in conjunction with daily enzalutamide on this arm of the trial. Tomorrow I go to the NIH for round 38 of this clinical trial. Last month the principal investigator joined my exam and told me that I had "busted the statistics" for this clinical trial. They anticipated 18-24 month runs for those for whom the combination was working, and I am now at 34. My quarterly CT, nuclear bone, and NaFl PET scans have spent the last year growing in intensity (and my PSA, which had been at 0.02 for 18 months also spent the past year increasing 40-fold to 0.8), so there is growing activity, but I'm not off the trial until there is a new metastatic site. Gus, my particular clinical trial @ the NIH is now closed to new patients, but there may certainly be others!

  • Thank you for the message. I have Ductal prostate cancer which does not always raise your PSA. In fact, the first time my PSA was above 4.0, it was already Stage four. They tested a slide from the pathology slide of a cancerous lymph node and found that 30% of the cancer does not respond to a PSA test. That said, they do not want to run CT/bone scans to see if this 30% of cancer that they can not monitor by PSA has taken off. Their attitude is that both forms of cancer will spread at the same rate. When I ask what proof they have of that I do not get an answer. Based on comments I think the real reason is cost.

    Currently I am about nine months into a two year stretch of Lupron. They stated that you can not get a PET C11 scan while on hormonal therapy. (Then again they do not want me to have a regular CT/bone scan. When I push them to realize that Ductal is not the same as "regular" prostate cancer their reply has been to say that I should not think I am special. To that I agree with them. I am not special, but my cancer is. I am the second case of Ductal cancer they have seen in the last ten years.

    I am getting so tired of fighting the doctors and was/am getting close to saying "screw it". Your note is a reminder that I still need to fight.

    Thank you.

  • Doc,

    I would find new Doc's. The 2 cancers do not grow at the same rate they showed me scans of guys loaded with just PSA negative cancer

    Gus

  • Re: " their reply has been to say that I should not think I am special. To that I agree with them. I am not special, but my cancer is. I am the second case of Ductal cancer they have seen in the last ten years.

    I am getting so tired of fighting the doctors and was/am getting close to saying "screw it". Your note is a reminder that I still need to fight."

    Absolutely. My strategy and tactics have always centered around trying to know more about the practical aspects of MY cancer treatment and MY priorities than my doctors do. (This hasn't been a big challenge yet.) Several of them have also said my case is really unusual; I suspect that is largely because I am so involved in it rather than just walking in and saying, "Fix me".

  • I heard that same song and dance from Dr Kwon. I wonder if he says that to scare patients into more $7000 choline PET scans.

  • Gus, your doubling time of PSA was good. The number I have been told to be concerned about is getting above 0.2. My Oncologist says the sensitive scans are not free to me with Medicare---because I have not gone Metastatic---who is paying for your Choline 11 Pet, and MRI scans. I asked my Oncologist last week to be scanned---said I was not a candidate with an undetectable PSA.

    As I mentioned my C-reactive protein as undetectable---as PSA rises so does the CRP test. So If my CRP goes up, and my PSA does not---then I would be suspicious, that I had a type of Pca, that does not register the full PSA truth--or as you say has a negative response--which is in body chemistry the Pca cell not giving off the Specific Protein, that is captured by Red Blood cells and is measured.

    Looks like Davy Jones will have to wait to get you into his Locker. Good News.

    Nalakrats

  • Nal,

    you Onco is full of shit. I have Humana which is a Medicare Advantage Plan and they pay for the Choline 11 and MRI scans. In fact, the first time I went to Mayo 2 1/2 years ago I had 3 Choline 11 Pet Scans over a 1 Year period and they paid for all of them. I would insist on the scans. Even DR. Myers said it is the aggressive negative PSA PCa cells that metastasize and kill you. Dr. Myers says in one of his video's that the PCa cells that produce PSA are mostly indolent. Are you aware of any supplement that actually kills PCa that has results invivo.

    Gus

  • Medicare has paid for all 15 or so of my Mayo Clinic scans, including 4 c-11 scans and other specialized scans. Only the 4th c-11 scan showed any clear mets ... one lymph node at PSA near 40.

  • Just a comment. My Medical Oncologist said that he would be hard pressed to get the insurance company to approve full body nuclear bone scan and CT abdomen scan with PSA at Undetectable. However, since it had been six years since I had scans and I have lower back pains (ie, possible new mets with out PSA rise), that he thought that it would go through. It did. Thankfully the scans are still negative.

    Gourd Dancer

  • I am having the same issue with insurance. I have a rare form of cancer that does not always raise your PSA and it spreads differently than "normal " prostate cancer, like to the brain, lungs, etc. The radiologist stated that he did not think he could get the insurance company to pay for a whole body CT. So I have to wait until there are obvious symptoms- which of course will lead worse outcomes.

  • Well I see the oncologist in June, again--or anytime sooner if I want. I will bring it up. And yes there are a dozen Supplements that cause cell death in vivo. Many we have discussed here on this site. I take them all--but I am concerned I might have those negative PSA Cells. My Pathology would indicate the possibility. I have Sodium Fluoride Scans available within 25 miles of me--and they are pretty close to Choline-11 in terms of sensitivity. And I have advanced MRI's 5 miles from my house--but my Cancer Institute---is 2 hours away. Not an Issue.

    When I get back from Costa Rica in early April, I am due for my monthly blood tests, and it is time to exchange my Vantas Implant, in my arm. Its my lupron drug gel insert. I get it swapped once every 12-15 months. At that time I will start the push for for scans.

    Will be going down in my row boat to get a 800 pound Blue Marlin---just have to deal with the Great Whites--and Davy Jones.

    Nalakrats

  • Nal,

    read this study...looks like a good idea to take three 1 mg arimidex tabs per week

    Gus

    ar.iiarjournals.org/content...

  • I am aware well too much about estrogen. The reason Dr. Meyers would prescribe both Avodart and Proscar together with some men is to try to not let any DHT to form. When it forms it breaks down to 3 estrogen bi-products and one is the deadly estradiol. So I take both 5-alpha reductase drugs above and add Di-indole Methane from Bioresponse---which directs any DHT metabolism away from Estradiol. I also avoid all foods that can have estrogen compounds such as yams, and all soy products--as they have components that can be converted by the body to estradiol.

    You will not see me using estrogen patches for off-setting ADT effects. When I discussed this with my New Oncologist--head of Prostate Cancer Research at Levine--he smiled at me when I told him my approach. Another words he approved--just was curious where I got my DIM---as it needs to be micro-encapsulated to get into the blood.

    Nalakrats

  • Thank you, Gus, for the very thought-provoking reference regarding the AR/ER components of Pca--it's a real eye-opener. I read the entire article, understanding as much as I could, but the take-away is pretty obvious: Arimidex! I wanted to send a copy of the entire article to my oncologist, but wound up sending him the abstract instead, because I don't know how to access the journal independently without your link. In any case, my oncologist either knows about the theory and has discounted it, for one reason or another, or because he's so busy, may not take the time to find the original article.

  • Gus: I am wondering what happens to the human body without testosterone AND estrogen. Countertenor?

    Craig

  • Nal,

    How long to your Docs want you to stay on ADT

    Gus

  • Great Question Gus. One that I have been playing with. My Urologist with 25 years of Prostate Cancer and my Surgeon, says if he was me--he would stay on them until they stop working. As he said that I have found a way thru diet exercise and supplementation to maintain myself that looks as if I never had Surgery or ADT. When I pushed further as to vacations or IADT. He said if he was me, he would not do it. So I have to take him seriously---as we have become great friends---and we go out sometimes for a few beers---he drinks the ones with alcohol, I drink the non-Alcoholic Beers.

    I said to him you have lots of patients on IADT, High T, even our mutual friend. But he said back, that my Pathology is so rare, maybe not the most aggressive, and my Gene Mutations pretty f-----up, that he would not want to let my Pca have an open door to come alive. He believes the longer you keep your Nadir at close to zero on PSA, the better your outcome will be later if the Pca wakes up. And he does not want to see mine wake up, because there is literally no data on the best way to treat.

    Now I went thru the same thing with my Oncologist last week at the Levine Cancer Institute---got basically the same story---let this sleeping dog alone---let it sleep. Now I know some people from other sites that have what I have basically--and when it came back--it roared back. Not good outcomes. Usually 4 years, and under the grass.

    Now I believe my supplemental program is very possibly the ace in the hole. I think I have Pca cells that wake up now and then and get hit with either one of my drugs, or one of my 20+ supplements, and go back to sleep or die. There is no way to prove this. But I remain on active surveillance with PSA's every 30 days and T every 60 days. We are trying to catch any move this cancer may make

    Both Docs. will let me do what I want--if I want to go BAT, IADT, or a Vacation, they will let me choose. So for now I will stay the course---for I myself fear my Pathology--it ain't nice

    Nalakrats

  • Nal.

    I would go with the Docs....BAT is only for guys who fail Xtandi and have mCRPC with nothing to lose..only worked in 30% for about 6 months then failed. In a study I read guys with lymph node only disease lived twice as long on ADT as with IADT...otherwise about the same with either way. Like you said leave sleeping dogs alone...why sleep with the fish when your destiny is to go out in a battle with a 20 foot Costa Rican Gator.

    Gus

  • 6 days to Blue Marlin Time in C.R. I will have some Wi Fi--so I should be able to be in touch. The Docs. look scared when I talk vacations/IADT, BAT--I can read people pretty well.

    Nalakrats

  • Nal,

    read the new post Latest Treatment by Boernebunny...wow...that is scary....I guess we got no complaints.

    Gus

  • What is it--I did not catch it--or lost it in my moments of brain fog.

    Nalakrats

  • Gus:

    You know what study comparing ADT with IADT in lymph node only guys?

    Regards,

    Craig

  • Nal,

    you take T every 60 days..can you describe your T protocol

    Gus

  • You must read me incorrectly--I have my T measured via blood test every 60 days PSA every 30 days.

    Nalakrats

  • Gus, good to hear that your scan results were favorable. I was diagnosed with a low PSA (2.7) Gleason 8 cancer about 7 months ago. I am exiting my six month eligard shot now. I want to see what my PSA reading is after HIFU, not masked by ADT. I want to get a sensitive scan sometime this year. I hope they don't use my low PSA score against me. My insurance hassled me just getting the darned eligard shot. WTH? I have the better Medicare supplement plan this year. Thanks for keeping us posted.

  • Gus, great psa progression. suggests you will live to something like 169! But the issue of choline-MRI for no-psa cancer. I sorta disagree. One test now, ok, but once you and the doc conclude that you don't have a no-psa type (neuroendocrine or ductal, I guess), is it really necessary to repeat the expensive test, even at 2 yr interval? If you had the no-psa type of cancer, you'd see mets and be done! Also, I thought the choline MRI was best done at psa >2 for 'regular pca? Once, ok, but why repeat...?

    herb

  • Re: " I thought the choline MRI was best done at psa >2 for 'regular pca? Once, ok, but why repeat...?"

    In the hopes of finding a tumor they can spot weld (irradiate) in a day or two or just snip out. Beats the HELL out of more invasive shotgun treatments.

  • Hi Gus

    As I mentioned in a different discussion i also have low PSA but High Gleason producing metastatic prostate cancer which has spread to my liver, lungs and bone. I am on chemotherapy and ADT now. I have just had a liver biopsy which was sent for DNA testing. I was told by my oncologist at MSKCC in New York that immunotherapy needs to be targeted based on DNA results and hopefully my DNA results will fall into a category of drugs which are effective. Did you have DNA testing to determine if the immunotherapy you are asking about would work for you?

    Dick

  • Dick,

    Mayo told me they don't believe in any of the current immo drugs especially since 7 men died in the Ketruda trial

    Gus

  • Gus,

    Thanks for the info. I am therefore best off staying on chemo and ADT till that combo stops working

    Dick

  • 1. Mayo/Dr. Kwon has successfully treated men with PSAs running into 5 figures ... as in 20,000 ... and pounds of mets throughout their torso. 0.17 doesn't even meet most oncologists' definition of recurrence, let alone treatment.

    2. Your doubling time is years, depending on what that "<0.1" means. That gives you something like a century before your PC will be noticeable. How old are you now? :)

    3. You are light years away from needing Provenge. At present, it is for men for whom everything else has failed and who are desperate to eke out another four months of life.

    4. My c-11 scans showed nothing until my PSA hit close to 40, and Kwon said he pays little attention to it until it's well over a hundred. West Coast cancer centers like to start us on ADT at PSA = 10; the midwest guys lean more treating disease, not numbers on lab slips. The only reason Kwon finally recommended ADT and chemo for me was my PSA > 40, my DT of 4 months, and too many mets to treat individually. Even then, I chose Firmagon over Lupron and low-dose chemo over the usual high-dose regimen (same monthly total but spread out over the month rather than all at once). Firmagon works better than Lupron, and the low dose chemo makes us feel better, not worse, than we did before the infusions.

    5. OTOH ... if SRT is in your future, as you know, the earlier the better ... IF it's appropriate.

  • its.B,

    Even with a PSA of .17 they found "one tiny" spot that could be PCa on the EndoMRI...Dr. Kwon said just monitor it...I said the hell with that and talked to the RadioOnco..he said it would be to hard to biopsy so he rec'd 4 month lupron for 2 reasons...ADT makes the radio more effective and if the spot shrinks then he plans to SBRT or as you say spot weld with 1 or 2 shots...I hated the thought of Lupron but I like <.1 way better than .17 heading to .2

    Gus

  • Kwon found only tiny -- too small to biopsy -- spots on me at PSAs of something like 1, 10, 16, and 40. But at 40 he had found enough of those tiny spots to abandon the idea of whac-a-mole and prescribe systemic treatment with Ye Olde Monthly 75 mg of Lupron. Like you, No, Thanks. No way in HELL would I take Lupron for more than a couple of months until I knew I had recurrent PC, because some men hover between 0.1 and 0.2 for many years until they die of something else. Also, prior ADT of any significant duration probably teaches too many PC cells to become resistant. This is where the doubling time becomes so important. My 52.5 @ DT = 4 months means serious, symptomatic mets by this fall, whereas 0.1 @ a year = STILL no symptoms a decade from now. Would I zap an isolated tumor at 0.2? Probably, if a c-11 scan found one and only one with NO reason to suspect more were lurking. But if HAD done that, the zap would have been wasted ON ME. IN MY CASE as more suspicious and widely scattered specks appear.

  • My dr (dr Myers) ; watched dr Kwon videos, thinking of going to him, do u know how long the wait time is for new consultations-can u get the scan the same day?

  • Calling up and getting on Mayo/Rochester Urology's patient list is quick and easy, presuming you fall within their general medical criteria for a c-11 choline scan. (For example, if your PSA is too low for success, say 0.5, they are not likely to waste their or your time on a scan yet.) Once you meet their criteria and provide all the relevant records so they know you're serious, their c-11 waiting line/time runs anywhere from 1 to 3 months, usually about two months. That's good enough for the vast majority of PC patients, and I'm sure they can rush a patient if the patient's cancer status warrants it.

    What I can't overstate is how efficient, well-run, EASY PEASY, effortless, smooth-as-silk a trip to the Mayo Clinic is, from the minute you set foot on Minnesota soil to the minute you step off Minnesota soil a day or three later. Even setting the trip -- flight, hotel, and ground transportation -- up is handled by Mayo Clinic professional travel agents if you prefer. Not only do they charge us between zero and 25 dollars, max, they can save us hundreds of dollars. In MN, when Mayo blinks, even the big airlines jump. Not only can you comfortably spend your entire trip to Minnesota in shorts and a T shirt in January, you can dine, shop, get endorectal coils up your yeng-yeng, sleep, swim, work out, visit the public library, and MUCH more all under the same miles of roof. There is zero need to fuss with a rental car, or finding a restaurant, or dodging panhandlers, or navigating a car in a strange city. I hate air travel, but the trip is simpler and more comfortable than driving to your local mall and going shopping.

    The same goes for all the scans and consults and blood donations. They cram everything possible into one action-packed, adventurous day beginning before 7 AM, and the next morning you will see Kwon. If more scans are necessary, they will schedule them immediately that afternoon or maybe the next day. Try to get in early in the week, so that potential "next day" is Wednesday or Thursday rather than Monday. (I found plenty to do the one weekend got stuck there by add-on scans.) The Mayo people, from the doctors to the cafeteria busboys to strangers on the street, could not possibly be any more friendly, helpful, and efficient. Their credo seems to be, "You Betcha!", and all 35,000 Mayo Clinic personnel know you want to get the hell home. Your problem will be squeezing everything and a meal in, not passing the time. I love walking fast, and so, apparently, do those 35,000 people.

    I can tell you WAY MUCH more to make it easy, but I'm time-crunched and that's all you need right now. Get back to me later when you suspect you may be going and need more tips. I got a million of them. Even those rushed trips were almost fun.

  • how long did it take to from from PSA 1 to PSA 40

    Gus

  • Gus, my dads onco seems dismissive and is concerned more about the lack of progression of the disease than the PSA number however my dad has been on treatment since July Lupron and then docetaxel which end of month ago the PSA has gone from 75 now to 2.34 and it has been a very slow drop it seems like I have had it dropped so fast. Is this a bad sign a sign that still headed in rt direction or is it of little value. It seems like everyone's dripped do fast esp with chemo. 2.34 is our best number as of now and they don't plan in adding anything. Thoughts?

  • Daddy,

    Your Onco is correct...PSA is just a number...the important fact is lack of progression

    Gus

  • Gus asked "how long did it take to from from PSA 1 to PSA 40?"

    Those are round numbers, but at a DT of 4 months, 1=> 40 = a bit over 5 doubling periods = about 21 months (I can predict my PSA very accurately up to a year in advance because it's a straight line on semilogarithmic graph paper). That's not the problem, though; these guys routinely treat PSAs in the thousands. The problems are

    • DT < 6 months is a highly escalated threat to our lives.

    • That 40 hits 80 four months later, and the symptom train is not far behind. Thus my ADT.

  • I too am a patient at Mayo where I see Dr. Kwon. I get the choline scan every 6 months. Is this the definitive scan for PCa?

  • It was for a few months. It now has competition -- with no clear winner I'm aware of -- from c-11 acetate and gallium 68 and maybe Walmart 22 by now. The race is under a green flag with many laps to go.

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