Some growing cancer, but where is it?

My PSA is slowly going up from 2 in january to 3 now. I want to find out where it is, so that it can be treated. I am a little at a loss. How do I find out where it is, and get it treated? I emailed Mayo Clinic in Rochester, and the admIssions people say no. I thought the C11 scan would be the best one. But possibly the PSMA/Galllium at is as good or better in SanFrancisco? T99 and CT scans show nothing, but obviously there is something. And clear scans mean I cannot apply for any trials.

82 Replies

  • Hello Martin,

    Did the Mayo folks say why the C11 scans weren't appropriate for you? What was the reason?


  • No they did not. Eugene Kwon said in a talk that sometimes it is "hard" to get an appointment. I assume sort of like when you are looking for a job, getting past the personnel department, and getting to talk to someone in the relevant department that is looking to hire. I don't take it as a medical opinion.

  • Martin: My fellow PCa sufferer up here (N. Ca) just got a (68)Ga-NOTA-Bombesin PET Imaging at Stanford. It showed a lit up area where normal CT and PET showed nothing.



  • Martin, where do you live? I recommend looking into 68Ga-PSMA PET/CT, as well as Axumin PET/CT. mpMRI is another option to consider, esp. in the region of the prostate.

    The PSMA scan is not yet FDA approved, but trials are going on in multiple U.S. locations. That includes both Stanford & UCSF, although I believe both are no longer enrolling. It's often possible to gain access to such scans if you are able/willing to pay. There are PSMA trials in other U.S. cities that are recruiting--check

    An advantage of the PSMA scan is its high sensitivity--roughly twice as sensitive as choline PET/CT for PSA < 2; appears to work well after initiating ADT; images both bone and soft tissue mets. Specifity of PSMA for PCa is not as clear--good topic to research, although I've not read anything negative in this regard. The PSMA scan has replaced choline for recurrent PCa scans at many centers outside of the U.S., including in Australia, Germany, & Israel, Go here for more details comparing sensitivity of PSMA & choline:

    Axumin scan was FDA approved in May 2016 (trials were at Emery U). However, I've only heard about one site so far doing Axumin PET/CT commercially for PCa--in Atlanta.

  • Yes, email back from UCSF says can be done. Scheduling out 6-8 weeks. Pondering.

    Axumin PET scan. Ah! yes, and I see now someplace called Blue Earth.

    "Axumin was originally developed at Emory by Mark Goodman, Ph.D" bravo.

  • Gallium68 PSMA PET Scans are considered to be more definitive and accurate than C11and most other types of scans commonly used for PCa. However you should take into account that its not unknown for PSA to elevate temporarily due to Bladder infection and recent illness etc.

    As a rule of thumb, if your PSA doubles each 3months Its time to start looking more closely for the reason, but in the short term I expect most urologists would consider active surveillance an appropriate course of action. Some times it pays to hasten slowly!


  • PSA readings are not always indicative of cancer. It could be due to an infection. A PSA of 3 is normal for for old men. You have baseline data now check in 6 months.

  • I have posted a year of PSA readings. Click my name. After hockey stick fall of values from 70 to 1.85, the last year has been a slow rise to 3.0 on ADT.

  • Another thought is "would the information change anything in the treatment?" At this low level and with a doubling time of almost 2 years, most urologic oncologists would not treat other than ADT which does not treat a specific lesion but is a systemic approach. You could spend a lot of money seeking this answer and not change very much in your approach.

    Just a thought. We all have different tolerance levels for change.

  • I agree, except that if there were a few lymph nodes, they could be excised, or a few bone mets: SBRT. The idea would be to treat, so that all known cancer was in the prostate. Next step then is something to kill CTCs - I hope Provenge would do that. Or other treatments to keep TAMs from pushing cancer out of the prostate.

    I would even do testosterone supplementation to "light up" the sites of metastasis. I am part of the "war" on prostate cancer, and I prefer to be at the front lines.

  • I agree Martin, keep fighting within limits of your stamina, availability of resources, and positive attitude. I am 71 and doing the same. Docrok

  • Agree with you. It is all different for each of us. I am 75, have had PCA for 19 years and no longer have the resources to pay for all of this. Luckily my spread to my lungs has stayed there on Lupron and now Casodex. Everything is relative and an individual value equation for us all.

  • 19 years! You've seen a lot.

    May I suggest, if you get the chance, the PCRI conference in Los Angeles in 2017. Not expensive, and many great people.

  • I am about in same boat. 4 years out from prostate removal and radiation. Psa 3.2. Current dr says let's wait. No me. Going to Vanderbilt Dec 8. Good luck

  • I would just observe my PSA for the next 90 days - maybe it's an infection - don't freak yet - my husband has been treated with several medications, chemo, radiation since 2012 - he's taking zytiga now - seems to be working - his PSA was 12 - now 1.0 - hang in there

  • this is a steady rise over the last year. I really dont think that the next 90 days will be any different.

  • Martin--Nalakrats here. what was your primary treatment I forgot? If you have had surgical removal or Radiation--the PSA going from 2 to 3 in 11 months is not that crisis oriented. But of concern. There has been no doubling yet. And you get to worry when doubling occurs in a month or two, time period. Also the accuracy of the PSA test is pretty tight, but duplicate tests could be off by a smidgen. Did you ever have or show spread of Pca cells to lymph nodes, or bone? If not then the little bastards are probably circulating in your blood.

    Lets look at my case--after surgery, and waiting 60 days, my PSA was almost 8. It was like I did not have surgery. We could find nothing in the scans. My Oncologist/Urologist team concluded individually the same conclusion. That I had micro-metastases. Not all Pca cells go out initially thru the Lymph, leaving a trail. Not all go out initially to bone. We all agreed there was nothing to treat, as there was no reason to believe they had landed anywhere.

    So the only options was to treat systemically--either by Chemo, or ADT. We wanted to save Chemo for a later option, especially at my age at that time was 72. So If you follow me, you know I developed a very intense Nutritional Supplemental program, to augment the Triple Blockade ADT drugs. This took about 2 months and I went from a PSA of 8 to Undetectable.

    So this is what we figure, though we cannot prove it, because we cannot see the little bastards, and they have not landed. We all concluded that we killed a bunch of the Pca cells as we caught them in the blood, and a bunch protected themselves by going dormant/to sleep. So I am many months now undetectable. We have no idea whether my Supplemental Program was of great assistance--which I believe it was--or the ADT Blockade carried the load of getting the PSA to undetectable. I am going to go on intermittent ADT around March of 2017, when I come back from 3 months of fishing in Florida. So I will come off all drugs, let my T get back to Normal and do AS, every 30 days/PSA's. If my PSA returns to I think we are considering 0.5 as a maximum then I go back on ADT. When we knock the PSA down again we come off the ADT--Etc. Etc. WE keep cycling. I know of one case who had very aggressive Pca, like mine--who went 4 years on ADT plus a Strong Supplement plan--decided to do cycling, and when he came off--which was 6 years ago his PSA settled at 0.3 and has been there ever since. He never had to cycle--I guess you can say he is in Full remission.

    I relate this as I am not sure what you all have done to this point. But I was Gleason 9 with it escaping the capsule, and hitting the Seminal's--yet as I said above we could not find it, after surgery. We had nothing we could radiate, as it was in the Blood according to the Docs.

    So I hope there is something above that is usable for you.


  • T99 scans are good, but miss the smaller sites of metastasis. Also some scans detect old cancer sites, the residue of cancer, so there is the problem of false positives. I think this is a problem with using 18F scans after treatment. I don't know as much as is needed to avoid wasting time and money.

    CTCs in the blood can also form into clumps. This is worse.

  • Martin are you on ADT--or some other protocol? Did you ever get to undetectable--and if so how long ago?


  • ADT. nadir 1.85 last January, now 3.05

  • Have you considered ADT cycling-ask your Doctors. 3.05 might be too high to cycle. Appears you never went to undetectable, which indicates to my small pea brain, that your primary treatment left Pca cells untouched. You may need the next level of ADT--I do not know--but I would monitor the PSA every 30 days. Your medical Oncologists and their science is what I would concede to.


  • Denmeade at Johns Hopkins does ADT cycling. Calls it BAT. I like the idea. I think he is on to something, although it is not the complete picture. He requires failure of abiraterone first. CYA.

  • Martin, my psa nadir of 3 was in 2007 after dx in june of 2006. 2 to three seems a fairly favorable 1.5 year doubling time, I agree it is good to know exactly where it is, to possibly iradiate the buggers. when you say adt , do you mean Lupron only or other drugs too.

  • Lupron (Eligard) only.

    It's growing and in the presence of low testosterone. Not good.

    That means that it has at least increased the number of androgen receptors (on the cell membrane I suppose). Testosterone can diffuse both ways through the cell membrane, so the additional androgen receptors keep the concentration of testosterone up inside the cell in a low T exterior environment.

    Or worse, it can create testosterone out of Cholesterol. This capabiility has been claimed to have been discovered, called the V7 variant or variant 7. Maybe. Dr. Antonarakis.

  • What about adding bicalutamide (Casodex) to the Lupron?

  • Yes, these are things that can be done along the lines of driving PSA to zero, one of the treatment tactical goals. But I hesitate to "use all means" to achieve that goal, since PSA is a guide as to how the cancer is doing, but not a cause of death in itself. Casodex is the next step in the path of hormone manipulation (or restriction), as is Proscar, as is abiraterone and enzalutimmide, but I hope to return to normal testosterone levels of 500, not go to 000. Partly because the long term effects of low T are problematic. Partly because it is generally a futile and fatal path. Partly because I think it is a real path to health, although right now, something is in the way. But what?

  • In the past we did a thing called adt3, which was adding casodex and Avodart to initial Lupron/eligard , zolodex,which for me dropped my psa when zolodex stopped working by itself, I was switched to nilandron because of liver abnormalities with casodex and that worked great. Then I went to ketoconazole, and that worked for years too. That was before the new super antiandrogens xtandi and zytiga, which also worked good for me.

  • I am not sure what to do about the "primary" site. I have had systemic treatment: ADT and Chemo. My imaginary goal for now is to heal the prostate: to encourage the healthhy prostate cells to out-compete the cancerous prostate cells. I am assuming that the healthy ones are better adapted to the environment, and there is a way to get them to suppress the cancerous cells or confine them. Part of the problem is the over-reaction of the immune cells to the cancer. The Macrophages kick the cancel cells out of the prostate (in my telling of the story) and into the blood. If this could be constrained, men would live longer.

  • So you still have the primary site---the prostate in you--and you have been, it appears radiated--but not all Pca cells were destroyed. If my memory is correct, once radiated, they do not do surgical removal, as a normal protocol. But on another site some surgeons have removed prostates after patients have been radiated, against normal protocol.

    It seems that you are trying to have your cake and eat it to. All I know is when faced with the Radiation verses Surgery--with a Gleason 9, and my Wife as a Nurse having done about a 100 prostate removals in the OR. It became obvious--debulk as much of the cancer as possible--cut it out. If I played with radiation, with a 20 PSA and a pathology that was mostly unstudied--it was get the beast out. As we later found out my type of pathology puts up resistance to radiation--it does get killed--but you need sometimes double the treatment visits. Figured I would fight it on the back end and not worry about my sex life--as I want to make it to at least where my father made it to--which was almost 90. Playing Golf and Fishing for many years is my goal.


  • Click my name/profile. ADT and docetaxel. No radiation.

    It will be cured someday, and if I can contribute, hooray!

  • Debulking, which Nalakrats suggests, was a big theme at the Prostate Cancer Research Institute conference in LA, in September. More than one presenter advocated an RP when other treatment(s) have been tried without eradicating the cancer. Perhaps brachytherapy was an option; I didn't take notes because I'm 13 years past having an RP. Anyway, the idea was to get that stuff outta there!

  • Hi Neal, I think the reason men choose other options is that they are all tied up in the fact that a very large majority will lose their sex life as they know it. And will have to use vacuum pumps and have dry ejaculations, or use Viagra, and penile injections.

    For me I had 55 years of good sex--like you said, get as much of this stuff outta there--and as fast as possible I might add.

    As an aside, In my case I had the Radiologist tell me that his procedure was equal to the Surgical Option--and he showed me charts and Sloan Memorial Statistics kept for years based on PSA, Gleason and Staging. Glad I choose the Get outta there--because later while studying about my pathology, after the Surgery--I find that my rare form of Ductal Cribriform, resists radiation. And the typical 39 treatment procedure and you are good to go would have probably reduced my life span. Yeah we would have killed a lot, but not enough--and then no one wants to do surgery after radiation.

    I keep telling men, as soon as they are Dx get the pathology report in hand and study the type of pathology, and how radiation or chemo does against it. If in doubt, or the info is iffy, get it outta there.


  • Hi Nalakrats. I followed advice that the best thing to do in my circumstances was an RP. When that failed, quickly, I followed advice to have EBRT with short-term Lupron. I was told there was only a 15% chance it would work, but that it was my last chance to be cured.

    I tried the non-surgical ways to deal with ED, & then I got a 3-part penile prosthesis. I'm glad to have it, but I really understand guys wanting to avoid losing their sex life as they know it. Then I stalled like crazy about starting long-term Lupron, as my PSA soared to 160. When a UCSF urologic oncologist told me I had no option in order to survive, I gave in. So again, I totally get guys wanting to save their sex lives as they know them.

    I found that I still had what I named "psychological libido" for my wife, & the implant made a nice partner with that. I'm very glad to be alive over a decade later, with more living ahead. While you may not be able to enjoy some things in the same way as before, there's so much you can still enjoy fully.

    I think the advice in your final paragraph is terrific! I knew I wanted the path report, but no one gave me the idea you suggest. And no one gave me the idea that chemo was used in PC until the late stage.

  • Understand Neil--some have to make certain decisions. If it is give up sex and live many years longer--or have sex, and die early, I opt for long life--as you say there is so much more to enjoy in life. Besides a good orgasm for a man is maybe 15 seconds---max. But understand the need to satisfy a wife, and make her a part of the process.

    Chemo can be used either early or late in the disease progression. Lots of new protocols in test and now in use in late stage by combining things like Xtandi with Chemo--and there are at least 3 new Chemo Drugs in test--some being used alone and also with Late stage Drugs. The combinations are limitless, with the Parb, and Checkpoint inhibitors, and the new anti-mutation drugs specific to a certain mutation.

    Lots going on!


  • I wrote my last sentence wrong, although you may have known what I meant, Nalakrats. What no one told me was that chemo could be used early; I only heard about late.

    It's very exciting how much is being developed, on top of the new meds we already have. A decade ago, what I knew about my likely time of survival made me think I wouldn't be here for ANY new meds.

    Lots going on!


  • Early chemo is only recently the standard of care. Prior to that, even doctors who knew about it were closed mouth about it, mine for example, I assume because there were no trials enrolling at the moment. I think that is why it is so important for patients to talk among themselves. And to find doctors whose fixation is to cure people.

  • Thanks Martin. No wonder I didn't hear about early chemo at the time of my RP (2003) & EBRT (2004).

    Between our group, the PCRI conference, & the Advanced Prostate Cancer group at the Cancer Support Center in Walnut Creek, CA, which dave2 convinced me to attend, I finally feel like I'm getting an "edumacation" (as singer/pianist Dr. John calls it).

  • Neal-Snyder: I attended the 2016 PCRI Conference in LA at the Marriott. I have the DVDs of the conference. I don't remember debulking being a big topic, but I will go back and review that. My recollections are not perfect. At the time it seemed to me that Dr Emberton never got around to HIFU, but on rewatching it, I see that that is all he ever talked about.

    My impressions are that RP in an ogliometastatic setting could be done, but aside from that, I don't think so. Even there, only if the mets are under control first. My recollection of it. I did ask Emberton something about that topic.

  • Martin, I'm not going to dig my notes out since my (home) office is a disaster area. And I never vouch for my memory anymore. But I remember learning the word "debulking" in a plenary session. It was discussed in connection with the prostate (& prostate bed?). In that &/or other sessions, presenters discussed treating metastases; I think they used the word debulking again, but maybe I just put the two things together in my mind.

    Either someone in the closing panel discussion said debulking was a big takeaway from the conference or I concluded it, having observed during the conference that "a big takeaway from [the conference]" is a very hip phrase.

    Of course if they were using words like "oligometastatic," I might have been dazed & confused. But seriously, I can certainly believe that your impressions could be accurate. Since my prostate is long gone, I could easily have failed to make a mental note that debulking wasn't for everyone.

    Emberton disappointed me because I was hoping HIFU was something wonderful for me, & found out fast it wasn't for advanced PC patients. As you say, it's the only thing he discussed. I got up super-early for that??!!!

  • When Dr Vogelzang was being questioned by Moyad after Dr V's presentation, the last question was "advanced cancer but prostate is still in your body. do you see any benefit to treating the prostate?"

    Dr V said "yes", and "this week in the journal of medical oncology, there was a nice review on this, men who had their prostate radiated vs not radiated. Not radomized. But radiated lived longer. " And something about a Johns Hopkins study showing small bit of cancer in prostate (can be the source of metastases). The Brits have done a trial, gonna be public soon, hormone and half also get radiation. We're gonna do a study in SWOG, we hope, etc etc.

    As long as they are getting rid of the cancer in the bones, Dr v would not be bothered by treating the prostate.

    I saw another spot about debulking, and could not find it again, when I ran across the Dr V comment. So it was discussed at least twice.

  • Thanks, Martin.

  • Dr Vogelzang excerpt:

  • But note that the picture that they show does not reflect the discussion. Dr V says that the horses outside the barn (have been killed). So I think it does, after all, amount to a context of mets being controlled, despite their seeming enthusiasm. My reading of it.

  • Neal, are you saying that even in the case of stage 4, that they advocated rp, That would be a switch from 10 years ago, and something I always thought would help, do you know which Drs this was maybe Dr Myers, Sholtz or Sartor, or was it a surgeon

  • Dan, as you can see in my response just above to Martin, I'm not at all sure of the accuracy of what I said after reading what he had to say, & can't put my hands on my conference materials & notes without some unpleasant labor. (When I find them, I'll reply again.) Maybe it's only used in an oligometastatic situation, as Martin says.

  • It certainly makes sense to get rid of the oldest and most mutated cells, this has been debated for years. before Horst Zinke of the mayo made a move to just continue with and rp when cancerous lymph nodes were found, and remove nodes, with increased survival, they would just close guys up when they found this

  • Then I have Horst to thank for what the Kaiser surgeons did for me, in 2003.

  • I hear U Martin: I went to Mayo this past July with Gene Kwon the man in charge. He likes a PSA of 5 or greater I believe b-4 he initiates the C11 choline acetate test. That may be why Mayo hesitated. My PSA was 7 and I was at the almighty rate of doubling time within 6 months when I pursued the C 11. My imaging test showed just a gray, suspicious area, in my right seminal vesicle (SV) after having been radiated twice before; once in 2001 with IMRT, and then in 2011 with brachytherapy, seed implants. Now a Biopsy confirmed 4 + 4 cancer in my right SV, and also cancer in my left SV, which did not appear suspicious with the C11. Existing prostate gland is still in me and showed no cancer in same biopsy. I did the robotic, Davinci, surgery and removed both SV's, left and right, and 10 nodes. I did not do my final surgery at Mayo for they only offered me cryo or the open version of surgery, cut vertically from my navel to my pubic bone. I consulted another Urologist here in the Twin Cities, Mn. where I live. He said he could do the same operation with the robotic. Music to my ears since the robotic is less invasive, quicker recovery, etc. With the above replies, the c 11 has a lot of limitations. I would pursue these other options Gallium 68, or the Axumin if U can locate these close to you. If surgery is recommended be sure to inquire about the robotic vs other choices for your treatment. I am 11 days out of my surgery now and recovering. Making slow and steady progress. Doc Rok, Minneapolis.

  • Dr Kwon is one of my heroes. He has hundreds of people wanting to get C11 scanned, and his attention, so has to prioritize. He advises persistence.

  • Good Martin Keep the faith with Kwon. I used his diagnosis, I just had the work done elsewhere and by someone other than he recommended. Again I see Kwon as going after the cancer if he feels he can locate it and treat it without automatic ADT, or chemo. I agreed with his call for me after our discussion. Doc

  • Hi Martin,

    The mets I have were found using a Flouride pet scan. There are too many imaging techniques to keep track of today. I've had 'regular' bone scans that showed nothing.

    What kind of trial are you looking for anyway? I was on a drug trial for CRPC with no mets. I was taken off when I got mets, but it did look promising.

    When ADT started to fail, PSA went from about 1.3 to 29 in about three months, I was put on Zytiga. I started this on 8/20, and on 11/4, my PSA was 1.1. Pretty good, I think. I also think I got off point here, so...

    Peace, Joe (Go Nittany Lions)

  • Actually, I look for doctors that have spoken in public, and seem engaged. So Dr Kwon on imaging, Dr Pienta at Johns Hopkins on plurixafor, Bruce Hollis on Vitamin D3, Dr Petrylak on estrogen receptor and raloxifene+. That's the first thing. Then by body area: bone mets, blood CTCs, TAMs in the prostate itself. Then treatments - mostly SBRT for localized mets.

    Johns Hopkins: Antonarakis, Chuck Drake, Denmeade

  • OK Way above my head.

  • There's one thing Martin just mentioned that any of us can understand & can afford. Watch Bruce Hollis's video on Vitamin D3 supplementation & prostate cancer, & buy some. I'm taking 10,000 IU daily. As Hollis explains, most doctors start worrying at much less, because they're relying on old findings that were wrong to begin with. (, Vitacost, Swanson.)

  • DR. KWON, Mayo, is on you tube.

  • After failing prostatectomy and radio-therapy I've been on intermittent ADT for about five years. Recently my PSA failed to respond to this in the approved manner and is currently hovering around 4, although it actually went down this month. I have no symptoms to indicate where it might be lurking. I asked my oncologist during our most recent chat if we couldn't have a stab at finding it. He admitted that we might be able to do that but wasn't sure that there was anything sensible we could do if we found it. At present I am outwardly in rude health with no symptoms other than those caused by previous treatment. And there's the rub - there really is no definitive cure for prostate cancer once it has escaped from the prostate. There is a real danger that in trying to treat it at all costs you may very well end up in a much worse state. The best we can hope for is to postpone the inevitable for as long as possible (and that may well be many years - every case is different). In the meantime quality of life is the prime concern. If you have no symptoms and your PSA is staying within reasonable bounds (as yours apparently is), it may be better to leave well alone for the time being and count your blessings.


  • Not my approach. I would hate to die without learning anything.

  • There is false hope. And there is false no-hope.

  • Hi,

    Certainly the PSMA /Gallium 80 is the best and latest scan able to scan down to 2 microns ... previously the best was 5-10 microns. Also have a Dexa scan ... you need to check whether there is any metastases into bone - Gallium also show up if there is evidence of dance in lymph glands, organs, tissue etc.

    You probably need to be on intermittent Lucrin injections (slightly different names are used in different countries e.g., Lupron). In earlier times patients were given three month doses end on but when the PSA comes down the latest approach is to cease the medication until the PSA starts going up and this lessens the chance of resistance - meaning it ceases to be as effective - although resistance tends to come in at some stage when you would then be given other medication perhaps as complementary or in place of Lucrin. Usually your talking of some years on Lucrin as the norm.

    The nuclear scan scene has seen very rapid change but the Gallium is the latest and best. Lucre has a half-life of 59 minutes which is remarkable ... a nuclear scan agent means that you are giving off radiation after the event often for hours with some agents - you steer clear of pregnant women and flush the toilet twice after you sue it otherwise the next person might get a does of radiation!!!

    I had a radical prostatectomy and then radiation of the bed of the prostate when the PSA started to go up but requested being given Zoladex before during and after treatment - for 12 months. At the time my Radio Oncologist, Professor Jim Denham, - one of the best anywhere - declined because Lucrin was usually given AFTER PSA began to rise after radiation treatment. Trials were done and now Zoladex or it's equivalent are given as the treatment of choice ... Owzat for a positive suggestion resulting in a breakthrough!

    Take charge of your condition and seek the best - that's what I tell my post-graduate PhD students in BioMed.

    Pax et bonum,

    Cheers, Aussiedad

  • Yes already on continuous ADT, with Eligard, rather than Lupron. 3 month depot.

  • That's fine ... remember that your pancreas is also involved in your various readings - Warning - NEVER accept testosterone as one respondent was considering ... as one old time but excellent Specialist Physician said to me "Taking testosterone is like throwing benzene on a fire - it's the ideal food for cancer cells". Be warned ... I had a stupid Endocrinologist - the only one around for 30 years! - who did just that to me - with no history of prostate cancer on either side of my family - the magical period for tumour development ... 12 to 18 months ... found me with Raised PSA and a Gleason of 4 + 3. This stupid man never did a PSA test on patients and all the GPs who referred to him followed suit and we have the highest rate of prostate cancer in the world.

    Pax et bonus,

    Cheers, Aussiedad

  • Adrenals, not pancreas, Yes I am considering testosterone supplementation, despite its being called throwing gasoline on a fire.

    So you had testosterone supplementation prior to cancer Dx. What was your blood level of testosterone? (I assume he thought it was low. Low being ? 250 300 ...) And what was your testosterone level at diagnosis?

  • I was referred to the Endo for thyroid problems and he prescribed the testosterone 'because I looked tired' he didn't even get a testosterone level before prescribing it ... had been normal range up to that.

    Don't under any circumstances take testosterone ... you'd be foolhardy and increase your chances of increased cancer cells immeasurably ... look at the papers - testosterone is totally off the scene with cancer.

    Again, testosterone is the ideal food for radical cells ... but I suppose it's a free world and you can stoke your system for promoting free radicals into proliferating ... mind boggling!


  • 1. Your case was that a doctor told you you needed more testosterone wihtout knowing your current levels.

    2. Intermittant ADT is a treatment plan, discussed in this thread, and it involves chosing to have a higher level of testosterone rather than a lower level. Some here support it adamantly, saying it gives many years of longer survival to Gleason 9 cancers. I do not agree with that characterization, but are you gong further to say that those statements are nuts? It includes Dr Mohlar, of the NCCN board.

    3. BAT is the administration of supra physiologic amounts of testosterone while maintaining the suppression of the natural production of the testes with ADT. Here is one trial:

    This trial was approved by the institution's trial board. I understand that you think that this should not be done, but some professionals disagree with you.

  • Correction: Dr Mohlar does not say that, but he does say that under some circumstances, higher levels may be the appropriate treatment.

  • 2 millimeters rather than 2 microns.

    Its like the girl who said I am six and I have a younger brother who is eleven. Huh? Eleven? Younger? Months. Eleven months. Unit of measure.

  • Addenda

    Having just read another entry 68 might be the isotope rather than 80 ... I need to check. The Gallium isotope has to be prepared precisely for each patient which means a very precise appointment ... you're given the injection and have to wait about 50 minutes for the agent to spread throughout your body before the scan. The isotope generator is currently worth $60,000.

    Pax et bonum,

    Cheers, Aussiedad

  • Last word ...

    I suggest that everyone look to boosting their immune system with Astrogalus 8, good solid Mediterranean diet, regular exercise and keeping the mind active beside maintaining your social life. Astragalus is a traditional Chinese herbal medicine and is now often used with added components. A very large Japanese hospital carried out a double blind trial with all patients and those on Astrogalus 8 as opposed to those on a placebo were discharged well ahead of those who weren't given Astrogalus. App patients - surgical, medical etc., had similar results.

    Pax et bonum,

    Cheers, Aussiedad

  • hi Martin

    Just a suggestion try bio identical progesterone cream and see if it has an effect on your psa.

    My source web site - young again- also lots of free reading downloads. Lots of luck.

    best wishes


  • Martin---as to cycling ADT--I do not agree that you have to fail Zytiga or Xtandi first. The reason for the cycling, is so you never have to use those drugs. The cycling keeps the Pca from becoming Castrate Resistant. When it does then you will need something else like Zytiga. And when cycling--you can use Metformin, which keeps the aggressiveness of the Pca down, when it comes back in the off ADT mode.

    My Doc. agrees--ADT cycling as soon as we see the PSA get to a certain number. Also I have a very positive R&D study on Cycling Testosterone with ADT. But not definitive yet.

    Either procedure, though I prefer the one where there is more real live info on effectiveness, is a way to keep killing Pca cells--as when they come up while off treatment or on Testosterone--they get happy, and you catch them vulnerable--then you hit them ADT and in the process you kill some or hopefully a lot. Then you cycle again, and again--each time killing some Pca cells.

    I would get second opinions about cycling. here will not be much on T cycling.


  • You say "Martin---as to cycling ADT--I do not agree that you have to fail Zytiga or Xtandi first." I meant the Trial exclusion criteria say that. It's there as a CYA, I think.

    Inclusion criteria: Must have disease progression on abiraterone

    Testosterone is injected at supraphysiologic levels while ADT is continuing. The testosterone level is changing, not the ADT.

    Keying on PSA levels sounds more like intermittant ADT, which is a little different.

  • Got you --Nalakrats

  • Ah! No I have not gotten around to ADT cycling. No study has shown it to be "Superior" for overall survival. It may alleviate some side effects. Statistically it is not (even) non-inferior. I thought you were suggesting BAT. My mistake.

  • Not that it is superior--it adds time--many months to years from keeping Pca cells from becoming castrate resistant--there is a 'ton of literature' on the subject,, just read another one last night, in a book titled ADT, indicating cycling to be superior to straight ADT for adding years ----they had examples of men with very aggressive Gleason 9's that are now 10-12 years out, and holding by cycling. You are it appears trying to find a cure--I will let others do that--while I am happy to keep the beast at bay, and living out my life, doing all the things I always did, except for the great sex.


  • The halting of Lupron until such time as testosterone recovers and PSA begins to rise, is more commonly called intermittent ADT, rather than ADT cycling. If you Google "ADT cycling", there are no hits.

    Here is Dr Mohlar, Chair of the NCCN Prostate Cancer Guideline Committee, speaking on the subject, and using the term "intermittent"

    There is no prospective randomized trial that shows that intermittent ADT adds years over continuous ADT for Gleason 9, or any Gleason.

    SWOG 9346, a very large trial, did not show that.

    If the side effects of Lupron are not tolerable, one can always do intermittent. That does not make it better for overall survival or the standard of care.


    Yes I believe that we will find new cures for at least some classes of Prostate Cancer, and I would like to help find some of them. I admit that there is for me the possibility of an unadventurous path to a cure: radical prostatectomy followed by PSMA/G68 imaging followed by SBRT.

  • Martin---One man's opinion---and we both know you are splitting hairs between cycling and intermittent---you think they do not mean the same thing----I do.

    I guess you will follow who you wish, and I will follow who I wish. Ask Patrick--he is our site's scientist-he may have a different take.


  • You must misunderstand me.

    I am saying you are using the wrong word. This is not "splitting hairs". "splitting hairs" means somthing else.

    The correct term is intermittant adrogen depravation therapy. You use the word "cycling" to mean this, but the literature does not use this term.

  • I have had a PSA reading of 130 and scans still did not show anything. I would not get nervous about a reading from 2 to 3.

  • Magnus, I am not nervous about a reading of 2. I am not nervous about a reading of 3. I am not nervous about a reading of 2 changing to a reading of 3. What these readings indicate is that there is a small site of active prostate cancer, a type of cancer moreover that is castrate resistant. It may be one lymph node.

    I want to find it and kill it.

  • Martin--a little late just saw your PSA 2-3 issue. You may find that you can do all the scans that exist and find nothing. And if you did find something, how would you treat? Because it would have to be somewhere. Many men would sell their homes to have a PSA of 3---just kidding.

    You may have what I have. When I was 60 days out from RP. my PSA was near 8. You would think that I did not even have surgery. But we could not find that Pca had landed anywhere. One SV was involved--no lymph nodes had any indication--but we took the four closest just for added confidence, along with the SV.

    My Radiation Oncologist, said there was nothing to radiate in the Prostate Bed, and they do not do radiation if your PSA is over 2.5. He said as my other Docs. said, "I had almost certainly, micro metastasis, which they described as Pca cells singularly running around in my blood that had escaped". So we went after them since they where vulnerable with a triple blockade, which became a quintuple Blockade, and the 14 anti-best researched Angiogenesis supplements and killers of Pca in test tubes and mice--both [in vivo and in vitro]--reported to date. Kill as much as you can and starve them, and put them to sleep before they land. So far so good, another undetectable last week.

    Following some of your posts, my uneducated view is you may have the same thing I do. That they are running around in your blood. The issue, is why are they still giving off a Protein Specific Antigen to red blood cells that can be measured? Which means how are you treating?


  • I did not have surgery. Dr Pienta thinks that postate cells in the bloodstream (aka CTCs or circulating tumor cells) do not live long. They can do CTC counts now [CellSearch at Quest]. I put my treatment history in my profile. Click on my name to see it.

  • Got you--Nal


You may also like...