Oligomicrometastatic cancer

24

Comments

  • Old Salt
    Old Salt Member Posts: 1,530 Member

    Conclusion on the results and recommendations from my doctor

    I had my annual consultation with the uro-oncologist following my case and was recommended to restart ADT instead of procuring an oligometastatic treatment.

    In other words, he rejected radiation intervention or surgically dissections of inguinal lymph nodes set in non propitious areas that have been identified by PET and that have already under gone interventions. He based his response on the PET results, the findings from the cystoscopy and colonoscopy (radiation cystitis), and past history of treatments. In his words the risks of RT outweigh the benefits it could provide.

    “… RT could free you from the bandit but it would not free you from the nasty RT side effects that will occur in view of the present clinical status. The area identified by PET is not propitious for additional RT because it has already reached the limits of radiation absorption and due to existing radiation cystitis and proctitis. You may find doctors willing to radiate the area but neither the EUA guidelines nor the NHS recommend such approach in radiating tissues in the pelvis twice.”

    Unfortunately the results were not in my favor. I have to abstain from my intent in oligometastatic treatment and continue with my systemic approach (intermittent ADT) of 2010.

    This time the uru recommended a monotherapy with Casodex 150 mg daily pill, alone. His reasoning in monotherapy is based on the long indolence period of 6 years I had during the vacation off drugs (since 2012).
    Surely this is not what I expected. My understanding is that I should be driven into remission levels (PSA< 0.05 ng/ml) and be kept at that level for a full 12 months before given up again with ADT. I wonder if Casodex alone can do the job.

    In any case, this NHS hospital has done some arrangements in its organization and has subdivided urology into separated specialties. The present uro was moved to attend only bladder related cases. That makes me to change doctors so that the next appointment (in December 2018) will be with a specialist in prostate care alone. I got his name and found that this new urologist has been involved in researches involving the famous hyperbaric oxygen treatment (HBOT). He has written several papers on the matter. It may be good to have him as my next attending doctor in case any radiation cystitis or proctitis get worse and I need HBOT treatment. Meanwhile I just hope that he follows the principle of the IADT, that invokes On and Off switches based on PSA levels and periods in remission. I wonder his personality, if we can trust each other.

    Best wishes to all reading my story.

    VGama 

    Dear Vasco

    Your latest report is difficult to analyze because there are no current data. What were the results of PSA and other relevant tests?

    I imagine there must have been a change that is worrisome.

  • G53
    G53 Member Posts: 33
    Oligometastatis-directed therapy
    Hi Vasco,

    I am also oligometastatic and have delayed the start of ADT for about two years now using local therapies, i.e. SBRT. So I know the situation you are in now.

    Metastasis-directed therapy is still experimental. So if you consult a doctor he will always recommend ADT and that's it. I always mentioned that I do intermittent ADT so they can write that down and nobody thinks they do not follow the guidelines. As I mentioned, I now have stopped ADT for two years now and currently have a PSA of 3.4 ng/ml.

    It was always a long fight for me to get the doctors to treat my lymph node metastases. Doctors want to treat curative, not palliative. Metastasis-directed therapy is usually palliative and you have to repeat it when new metastases appear. I followed this trial with my own treatment:
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4066290/

    With a PSMA PET/CT you see more than with a Choline PET/CT, but there are still micromets which you will not see. You will see these a year later then, when they have grown in size. Also, if you see one lesion with a Choline PET/CT, you may see six with a PSMA PET/CT. So you were oligometatastic before and after the PSMA PET/CT you are systemic and noone will treat your mets locally anymore.
    Finally, a PSMA PET/CT report usually tells you that they determined a few lesions here and there but it also mentions that there are several „uptakes“ which may be lesions but are unclear yet. So the RO will tell you: and what do you want me to radiate now? I cannot just radiate the ones that are clearly lesions. And I cannot radiate all that's doubious.

    When you do an SRT, they will just radiate the prostate bed in about 90% of the cases. So you still could try to radiate the lymphatic drainage (omitting the prostate bed) to fight the micromets you cannot see. However, this are about six weeks of daily radiation plus the common side effects of radiation. This approach was done in this trial:
    https://ro-journal.biomedcentral.com/articles/10.1186/s13014-018-1118-7
    However, considering that most patients did adjuvant ADT in this trial, the results are not all that exciting I think. You may also want to look into the trials by Schick and Henkenberens mentioned in the references in this report.

    In your case I would try to treat the recurrence you have in the prostate bed first. This probably causes most of your current PSA value and you may slash the PSA value in half if you treat that.
    This is possible with brachytherapy of focal therapies like HIFU or maybe laser ablation. Here is an overview of focal therapies:
    https://www.europeanurology.com/article/S0302-2838(18)30005-8/fulltext
    Focal therapies can be used for recurrence after radiation too.

    Regarding the PSA value when to start with ADT I had already posted on this recently, I consider a PSA value of 2 way too low. I was refering to this review by Botrel which showed that most reviewed trials started ADT at a PSA value of 10:
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3913526/
    You pointed out then that you follow Dr. Myers advice and would like to start at a lower PSA value.

    Regarding Bicalutamide/Casodex, here is a good review for that:
    https://www.croh-online.com/article/S1040-8428(00)00051-2/fulltext
    Also take Tamoxifen with it to avoid breast problems. Difficult to get, since it is off-label for this purpose although some guidelines mention it.

    In all I think oligometastatic treatment should be done as part of a multimodal treatment in combination with ADT.

    What is your Gleason score, Vasco?

    G53

    You have to copy and past two of the links since this forum software will cut the link if a bracket is included.
  • VascodaGama
    VascodaGama Member Posts: 3,707 Member
    A smithereens mind

    Thanks fellas for the comments.

    Old Salt; you are right. I forgot to lay down the test results in my above post (my mind is away). Both, the PSA and Testosterone have risen from 1.75,T=284 (July) to 1.96, T=404 (October). This PSA level is still within the plateau (bouncing between 1.5 and 2.0) it has accommodated since May of 2016. I believe it will still continue a slow increase for several more months. According to the IADT protocol, the trigger threshold for restarting ADT should be 2.0 (maximum 2.5) but I cannot see the point in continuing this vacation period (off drugs) if no other purposes exists apart from this systemic treatment.
    The cystoscopy has shown radiation cystitis. The doctor indicated that the bleeding is from inflammation of bladder's walls as a natural process of my body that occurs from time to time in an apparent attempt to repair the tissues. He said nothing about other issues but I believe that the bleeding also occurs at the urethra which leads to blood clogs and urine retention (two occurrences in May). This sort of inflamation is not caught by choline so that the PET scan results were not influenced by such as I previously thought.

    Somehow I am upset for the conclusion. I do not think that I can choose a treatment that goes against the NHS guidelines, unless I find a radiologist interested in trying to radiate under the circumstances. Probably Datolli in USA would do but I cannot afford it. In any case, I have still a scheduled consultation with a radiologist done for a second opinion on rads over rads. I also would like to get an opinion that could explain the reason for the recurrence of cancer at the same irradiated area of 2006. I know that some cells resist radiation, modifying its DNA and surviving. If such is the case then what assurances one would have that added radiation to these newer cells would do the job well this time.(https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4429645/).
    At least I will learn something in case I need radiation for pain control in the future.

    This month I also had several cardio tests to check for issues related to high blood pressure (146/97) an event under medication (CoDiovan). The heart is in shape biting well but BP has gone crazy when in stress testing (cholesterol is good at 146 mg/dL). I have to slow down in emergencies or risk a heart attack. This is not the best status for a young 69 years old that will be under the effects of ADT for life.

    Thanks for the interest.

    Best wishes,

    VGama

  • VascodaGama
    VascodaGama Member Posts: 3,707 Member
    Thanks G53

    G53,

    Thanks for the inputs, the links and the opinions. I enjoyed reading the article about antiandrogens as monotherapy. This is a hold study but still valid because antiandrogens have not flourished (apart from Xtandi) and ADT keeps the same principles.

    I was diagnosed in 2000 with Gleason score 5 (2+3) which was reconfirmed at two other institutions. Though, since 2006, the Gleason rates 1 and 2 have been abolished in PCa diagnosis and were replaced by rate 3. This means that the lowest score is Gleason 6 (3+3) which is my present classification.

    I notice that the above studies regarding rads over rads do not describe the status/details of participating patients. I wonder if special consideration were done to the guys presenting radiation injury at organs (cystitis and proctitis). What may have been the criteria for inclusion into the trials?

    I would like to know about your experiences on the matter. Have you done rads over rads at the prostate fossa?
    What was the dose at the initial RT and the one done over the initial?
    How many years have passed since the initial RT?

    Thanks again for the inputs.

    Best wishes

    VG

     

     

  • G53
    G53 Member Posts: 33

    Thanks G53

    G53,

    Thanks for the inputs, the links and the opinions. I enjoyed reading the article about antiandrogens as monotherapy. This is a hold study but still valid because antiandrogens have not flourished (apart from Xtandi) and ADT keeps the same principles.

    I was diagnosed in 2000 with Gleason score 5 (2+3) which was reconfirmed at two other institutions. Though, since 2006, the Gleason rates 1 and 2 have been abolished in PCa diagnosis and were replaced by rate 3. This means that the lowest score is Gleason 6 (3+3) which is my present classification.

    I notice that the above studies regarding rads over rads do not describe the status/details of participating patients. I wonder if special consideration were done to the guys presenting radiation injury at organs (cystitis and proctitis). What may have been the criteria for inclusion into the trials?

    I would like to know about your experiences on the matter. Have you done rads over rads at the prostate fossa?
    What was the dose at the initial RT and the one done over the initial?
    How many years have passed since the initial RT?

    Thanks again for the inputs.

    Best wishes

    VG

     

     

    Gleason 6 does not metastasize
    Hi Vasco,

    if you have a Gleason score of 6 (or lower) the chances that the tumor metastasizes are extemely low. See these studies:

    https://onlinelibrary.wiley.com/doi/abs/10.1111/bju.12879
    „No metastasis or disease‐specific death were seen in men with Gleason score ≤6 prostate cancer at RP, showing the negligible potential to metastasise in this large subgroup of patients with prostate cancer.“
    https://www.goldjournal.net/article/S0090-4295(13)00440-8/fulltext
    „Our findings support the conclusion that Gleason 6 disease exhibits a very low capacity for metastatic spread.“
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3421030/
    „Based on the current study, it can now be added that GS≤6 using the updated system lacks the potential to metastasize to pelvic lymph nodes.“
    https://www.urologiconcology.org/article/S1078-1439(16)30212-5/fulltext
    „Our population-based and institutional analyses suggest metastases in cases of Gleason score≤6 prostate cancer to be extremely rare.“

    Therefore I doubt the diagnosis of micromets you got. You cannot see or determine micromets using imaging by definition, how does the doctor know there are micromets? Did she do a lymph node dissection?

    So the rise in the PSA value is almost certainly caused by the local recurrence in the prostate bed. Donin et al. write (link above):
    „In our large cohort of men with pathological Gleason 6 disease undergoing open RP, sBCR (significant biochemical recurrence) were attributable exclusively to local disease recurrences.“

    You could leave that recurrence untouched and live happily ever after. So watchful waiting is the right treatment now. Any treatment of recurrence carries a high risk of lasting side effects, no matter what you choose.
    You just should not worry for higher PSA values in that case. If you would present today with a Gleason 6 cancer, you could choose active surveillance as long as the PSA value is below 10 ng/ml (plus other parameters). So you can wait until your PSA value has reached 10 ng/ml before e.g. starting with ADT.

    As Kweldam et al. write: (link above):
    „No metastasis or disease‐specific death were seen in men with Gleason score ≤6 prostate cancer...“

    G53

    Regarding your question: I had SBRT radiation which just radiates the visible mets. So the treatment plan looks like a swiss cheese. The radiated areas did not overlap. Just forget about re-irradiation in your case - its the completely wrong decision. You would probably buy nasty side effects without any reason for it.
  • Georges Calvez
    Georges Calvez Member Posts: 547 Member
    Gleason, PSA and metastases

    Hi Vasco,

    It is possible to have metastases with low Gleason Scores and low PSA but it is very unlikely.
    More likely in your case is that a few cells survived the radiation of the prostate bed and have now grown into little nests of cancer, in the absence of a positive bone scan or other evidence I would opt for that one, it is more than 90% likely I feel.
    The problem is that sometimes when things are not cut and dried you can get three doctors in a room and get four opinions, a bit like economics!
    http://journal.waocp.org/article_28064_2f65ef9539438e4585717e4813c21b20.pdf

    Best wishes,

    Georges

  • lighterwood67
    lighterwood67 Member Posts: 395 Member
    A lot of feedback

    Well, you are ceratinly getting a lot of feedback.  Well deserved, I might add, because you have provided a lot.  I must admit I do not know a lot about microtastases.  The only thing my test tube has had an opportunity to deal with at this time is RP.  With that said, how are you mentally and physically?  How do you feel? You strike me as a very positive person, when it comes to hunting the bandit.  So my friend, stay positive.  I think your positivity and objectivity has kept you ahead of the bandit.  Don't change a thing, do what you have always done.  Good luck on your journey.

  • DougS
    DougS Member Posts: 21
    edited October 2018 #29
    Rads over Rads

    Hi Vasco,

         You encouraged me as a newbie when first was diagnsosed in 2008 to seek out the most patient advocate doctor.  I ended up under Dr. Myers care for a total of three years which I believe significantly impacted my prognosis.  Thanks.

          My initial treatment in 2008 was with IMRT 73 Gy (41 fractions) at the Univeristy of Iowa Medicatl Center.  I subsequently had salvage cryablation treatment in March, 2014.  PSA never reached zero and finally began to rise.  Another round of radiation treatment (proton beam radiation) at the Scripps facility in San Diego (along with Firmagon/Xtandi) has resulted in PSA results <0.006 since 2016.  I need to find the actual radiation level but I know it was relatively high.  Having been radiated before, it was move difficule with the SpaceOar being inserted into tissue theat was less pliable.

           Dr. Rossi and I did have conversations about having been radiated previously but it had been eight years since my first IMRT treatment.  He didn't seem overly concerned and thought it had been enough time for the prostate tissues to heal.

           Please let me know if there is any other information yuou might be interested in that might be of help in your treatment.

     

    DougS

         

     

     

  • VascodaGama
    VascodaGama Member Posts: 3,707 Member
    I am not ready to throw the towel yet

    I want to thanks for the opinions and links provided by everyone above. I have read all and added a fewer more researches into the data presented in the articles.
    The subject of the studies is not new to me and for sure I fall into one of the groups presented in the articles (and so are the many reading this thread in similar situation).

    In any case, I would like to point out that the concept involving the terminology of “oligometastases” or “oligometastatic treatment” has changed nowadays from its initial meaning (2010) where one would refer the condition to metastases found post salvage therapy. The meaning used today by the many refers to the fewer number of mets identified via the sophisticated PET scans, independently of the time when the detections has taken place. It could be before a prime therapy (surgery or radiation) or at the timing of the first recurrence for a salvage therapy or after that.
    In such regard, those studies do not fully serve cases of rads over rads or rads before one succumbs to systemic treatments.

    My present situation is not unique to me. Many guys are confronting recurrences after salvage treatment and would like to know how far they can go with a sort of oligo treatment, in particular if such involves spots at the same areas previously radiated. Medical associations do not recommend rads over rads but independent radiologists see no trouble in rads over rads if the time lag is sufficiently long to guaranty recovery of tissues. For instance, my radiologist commented to be 5 years (similarly to DougS’s above comment on Dr. Rossi). This is the main theme of my researches but as of today I have no concrete answers. DougS’s story with proton over IMRT helps in understanding the benefit of controlled rads over rads.I wonder about the results if instead of the proton one uses the common IMRT again. Will RT free us from the cancer or is it just a palliative result providing few extra months of additional survival?

    Fortunately to me that the metastases are localized and the cancer has been slow growing, giving me time to wait for newer therapies (a mixture of nuclear pharmaceuticals) and modalities (combination therapies). Cancer was never diagnosed in bone and the last PET exam revealed existing abnormalities only at the prostate bed and at one close lymph node (disease confined to the pelvis).My worries go to the infested lymph node which is usually the first stop of the cancer before it travels and spreads to distant places. Palliative approaches with ADT may not be enough to hold the bandit for long time and I wonder if radiation would do any good too.
    Quality of life is in my mind but the side effects from a palliative ADT would also create scars. This is a difficult time in my journey. I can follow the experiences of Jerry’s (Old-timer) with HT monotherapy or follow an aggressive approach with added radiation. I am not ready to throw the towel yet.

    Thanks G53, Georges, Lighterwood67 and Doug.

    Best

    VG

     

  • xNTP
    xNTP Member Posts: 38 Member
    other modalities

    I hesitate to start this subject, because of myths, superstitions, emotions and profound errors on both sides of the aisle.   But it is potentially an important one that has saved me tons of money in normal billings, and brought a significant other, ongoing years of high quality for a metastatic cancer situation where everybody else simply died soon, hard and often, poor.  I am on unfamiliar ground with many prostate details, still a newbie not yet engaged full bore.  But in some other cancer areas, I've seen a lot - organized and paid on surgeries including a then hard to get surgery for oligo mets (a conglomerated LN cluster), advanced labs, and chemo, found special medical and lab talents, investigated various options, several RT out to carbon ion (no RT, yet).  I'm into multimodal, multiprong attacks with a smaller footprint.  I also admire the work of Ben Williams, a long term brain cancer survivor, on his virtual trials approach.

    So here goes...

    The areas I spent time on most fruitfully were labs and off label chemistry, including supplements.  I see the lab areas and specific off label drugs as a substantial research restart for prostate cancer.  The area I see easier advance is, to me, on supplements.   Our earliest effort before surgery with off label drug and supplements did yield substantial necrosis of many mets but not everything, so a simple daily chemo after surgery was added and it has worked well.  For many years, any shortfalls in chemo or another drug or some supplements, yielded rapid marker increases.   Basically, simple chemo alone didn't work for us, but combinations did.  Some inhibition information came from labs testing viable or fixed tissues, others from advanced bloodwork with better sampling, more panels and markers at low enough cost.

    In our experience, most people trying supplements did not have the technical support and detail to succeed systematically. Most patients get what I consider poor chemistry - wrong molecules, seriously incomplete formulations, and/or doses below threshholds to cause measurable changes.  So far, I have seen some reference to prostate oncologists adding nutraceuticals, but they didn't seem that aggressive and systematic to me.  I distinguish between "polite treatments", with mild immune and quality of life improvements, the common variety of natural support, and high potency treatments that actually move markers and scans. 

    The most commonality that I see from my readings are for some relatively inexpensive supplements add-on options at high potentcy.  I realize in Europe, this maybe harder to do, but I am not sure of the cross border options.  For us, with a supportive MD for support and scrips, we have used sources in the US and Asia for supplements and generic drugs without too much border hassle. 

  • VascodaGama
    VascodaGama Member Posts: 3,707 Member
    xNTP, can you explain

    xNTP,

    I do not understand your post. I wonder what makes you hesitant of talking about. Is it on your experience with supplements or techniques in combinations of chemo therapies? I believe that many here would like to read about the benefits of certain supplements in PCa affairs. Unfortunately, some guys have in past named holistic therapies but none has so far provided results.

    I recall some of your past threads where you demonstrated to have reservations in getting a diagnosis via a biopsy. I wonder if you have become a member of this club. Can you tell us more details about your case and any treatment you have chosen and about its outcome?
    Please let us know of your experiences and researches.

    Survivors in this forum are not against suggestions related to nutrition, diets or supplements. We are against those who post in the forum with sales intent.

    Best

    VG

  • xNTP
    xNTP Member Posts: 38 Member
    scoping things out

    I've seen horrible flame wars  and attacks where 1-2 "anti-supplement" people were worse than any supplement sales stooge or brain dead CAM parrot - where some people quit, some got banned, all lost; the group was permanently damaged.  It is a subject area that I often see a lack rationality and basic erudition, pro and con.

    I've posted most of my prostate situation to date (thanks for your replies guys).  With the rising PSA and a first mpMRI of 3 PI-RADS in Nov'16, I was stymied on the biomarkers that I wanted, and the guided biopsy for a year, PSA still rising.   I finally adopted some of the PCa overlapping supplement routine that we've used on another cancer with just PSA and free PSA available.  I did this before the 2nd MRI, which came back as a 2 PIRADS, with a lower PSA.  Although I consider PCa to have great differences on chemo with small overlap (e.g. 5FU) with some other cancers, the medical research literature that I've seen shows more overlap on nutraceuticals.  Basically, for serious cancer, it took both some compatible, conventional chemo AND high potency nutraceuticals to kill it best, both in the lab and at home.  Most supplement attempts I've seen, might at best be called one percenters - 1% of anything actually useful,  or even closer, "1%rs cubed".  This along with half hearted, totally clueless, misguided or deluded attempts.  

    I finally went to the hospital with the primitive fusion biopsy setup in June, fully expecting to get the biopsy there, when the 2nd MRI was released.   This urologist went through all the motions; when we got the new MRI reading via fax (=2 PI-RADS, latest edition). With 2 PI-RADS, he suggested that I do normal prostate supplements, maintain surveillence, and come back next year. 

    Since I was doing those other things, mentally I class myself as likely BPH or transitional and hopefully slow moving PCa, especially with extra chemistry.  I do read the various odds and try to balance risks and benefits.  I am very gunshy about conveyor belt urologists (my first urologist was a slick package) who won't talk literature and support options.

    Here, I would like help tracking down the previous CAM experiences, and talking about what might be useful add-ons to chemo, from different sources (medical oncologists, extra biochemically oriented MDs and NDs, and potential pathfinders).

  • VascodaGama
    VascodaGama Member Posts: 3,707 Member
    Agree to disagree

    xNTP,

    Thanks for the explanation. I understand your concern in regards to the discussions on supplements or medication not labeled or supplied via dubious sources. Anything that has not a feasible probe of its claimed benefits is subjected to questioning by the many. Some do it by curiosity and some by suspicious. It is logical that in a cancer forum such a subject is highly delicate. There are unscrupulouspeople out there trying to take advantage from cancer patients. In such regard, the conversation can become sour and everybody must accept to agree to disagree.

    In any case, for the many reading this post and not participating, I want to say that nobody would impede someone from coming forward and telling us about his experiences. These experiences are rarely read in this forum maybe because the speaker does not like or doesn’t want to be subjected to coerced comments if the results were not the best. However such is not the motto of our comrades. We want to help the many talking about our experiences or findings done on researches along our survivorship. We discuss any matter is it shameful or inconvenient or holistic. Our amateur opinions are not to be followed but to be studied further by the listeners.

    xNTP, your story is very interesting. What surprises me is that you have used supplements for a cancer that you do not know if it even exists. It seems to me that what you tried may have had some sort of influence in the source producing the PSA as it got down. It could have done some good to prostatitis or knock down the androgens (dihydrotestosterone) causing the increase in the volume of the prostate (from 45 to 72) in two years which easily can represent the increase of the PSA from 8 to 12.7 and then 9.7. The control is not complete and you do not know yet if the issue is cancer or simple BPH.

    You are asymptomatic, got a negative DRE and lower PI-rads. The high PSA is the only feasible data that makes you suspicious of cancer. I think you doing well in waiting for that “sophisticated” fusion biopsy you comment about. However, you need to be vigilant and get a biopsy if the PSA increases at the same volumetric of the gland. I wonder about any urination issue you may have experienced in the past.

    Those interested in your story they can follow it in this link;

    https://csn.cancer.org/node/317761

    In regards to your interest in discussions on add-ons to chemo, I think that you may find interesting discussions at chemo specific forums. Here is the link to Macmillan cancer support group;

    https://community.macmillan.org.uk/cancer_experiences/chemotherapy/discussions

    I am curious about what you know regarding the use of Fluorouracil in PCa affairs. It is used in breast cancer which shares the same genes of prostate cancer but I never read anything about its use in PCa. At Macmillan site you can find details of several chemo substances, including this Fluorouracil. The influence of nutraceuticals in cancer has been studied. The environment has been linked to initiation of cancer but so is the chemo or some carcinogenic minerals we ingest in diets. Some affect the other for good or for the worse Balancing seems to be the best approach so that supplements tend to be low in grade or less beneficial as you found out (1%). Japanese diets tend to be well balanced leading to a neutral conclusion after a meal.

    I do not know of any trustful CAM on chemotherapy. Famous oncologists (like my hero Myers) use to group at the annual PCRI symposium (https://pcri.org/#welcome) where several opinions on the effects of drugs (new and old), treatments and diets were presented and discussed. Most of the participant speakers were specialized medical oncologists in PCa affairs.

    I recall your input in my past thread on renal insufficiency that led me into one of those CAM sites. The Life Extension site was very helpful for my understanding on the kidney problem. It is educational. You may find something on chemo add-ons there too.

     https://www.lifeextension.com/magazine/2010/5/innovative-strategies-to-combat-kidney-disease/page-01

    Please let us know the details. Can you list the nutraceuticals of your experience? What did you find out?

    Best wishes.

    VGama

     

  • Georges Calvez
    Georges Calvez Member Posts: 547 Member
    Alternative treatments

    Hi there,

    I am wary of alternative treatments as I am old enough to remember the great laetrile debacle, that stuff is definitely not a cure for cancer.
    Not related to cancer but I also know quite a lot about DNP, 2,4-dinitrophenol, which is used as a fat burner, it works after a fashion but it can cause death.
    I am currently drinking a big glass of tomato juice in the morning, two of my five a day and if the lycopene pisses off any cancer cells even one percent that is a bonus, like Vasco I take the odd dose of  resveratrol in the form of a nice glass of red! :-)

    Best wishes,

    Georges

  • VascodaGama
    VascodaGama Member Posts: 3,707 Member
    Kampoyaku are not just supplements

    Georges,

    I think that all we cancer patients at some time in our journeys have looked into supplements or holistic ideas to fight the disease. We change diets and commit to healthy life styles thinking that by doing so we may revert the situation. However, our building blocks do not change that simple and the cancer got its ways inscribed for surviving any destruction if such is permitted. Not all are affected by the chemo mixtures and those supplements beneficial in the survival of cells are also contributing for the survival of the cancer.

    In 2001, when I recurred from RP, I become a believer in Selenium and Vitamin E (stop taking it in 2005 before RT). I also drunk lycopene every day took grapefruit and omega tablets. Even today I try to include in my diet products found to be helpful in the fight against cancer or otherwise good in body functions, but I never gave up with the things commented to be hazards, such as dairy or meat. I started giving more importance in balancing what I ingest. Instead of drugs I try substitutes mainly from life style chsnges.

    XNTP above is looking into further deep ways to prevent or treat the cancer. He seems not to believe in those traditional supplements, giving preferences to combination therapies involving nutraceuticals (dietary compounds). I wonder if in his researches he has included the lycopene, punicalagins or resveratrol. Several nutraceuticals have had its ways into medicine from ancient times and can be found into herbalists (Asian medicine shops) or the Japanese and Chinese Kampoyaku. Here are listed some of those nutraceuticals and the purposes of its use;

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4336979/

    Some more details in here;

    https://www.ncbi.nlm.nih.gov/pubmed/16866016

    Best,

    VG

  • Georges Calvez
    Georges Calvez Member Posts: 547 Member
    Cannot know

    Hi xNTP,

    I have carefully read all of your previous posts and I must admit that it is impossible to say much beyond the fact that you pretty much have BPH and prostatitis and maybe prostate cancer on what you have done so far, I think almost any competent urologist would tell you the same as us.
    He would then go on to and say that you really need a biopsy to find out if you have prostate cancer or not.
    For the moment you are taking various things to treat a disease that you may not have.
    Even if you have it, it is likely that it is pretty small and indolent so treatment could be as little as watchful waiting, but at least you would know that the the bandit is there and that in my opinion is 50% of the battle.

    Best wishes,

    Georges

  • xNTP
    xNTP Member Posts: 38 Member
    part of why

    VG: What surprises me is that you have used supplements for a cancer that you do not know if it even exists. 

    GC: For the moment you are taking various things to treat a disease that you may not have

    One of the interesting things about (high potency) nutraceuticals is that they have multiple uses and benefits.   Chemo is typically inherently dangerous and unpleasant, getting worse with the stacking of chemo drugs. Even outside of chemo, polypharmacy often has dangerous interactions and side effects.  Whereas these nutraceutical formulas can be poly functional and broader spectrum, including making chemo broader spectrum, and less ugly.

    Also I have other medical reasons to use these nutraceuticals; perhaps including BPH.

    On broader spectrum, I'll give an example.   5FU has many cancer uses but is often slow and weak to ineffective as a monotherapy, also with some serious side effects, from common to random.  Commerical adjuncts increase the spectrum of cancer cells killed, and the patient's length of survival, with some really ugly side effects that can seriously damage or kill the patient, or cause them to lose the will to treat further after a year or two, or weeks/months.    One nutraceutical combination increased the 5FU effects longer and stronger than the normal commercial adjuncts with much fewer side effects, and some nice side benefits.    e.g. some nutraceuticals that improved cell kill in the lab on actual patient tissue, and broadened marker performance in real life, for many times the duration of potency for 5FU alone, also helped prevent common tooth losses and densified bone on the CT scan, as claimed in foreign medicine.

     

  • VascodaGama
    VascodaGama Member Posts: 3,707 Member
    Kampoyaku coktails may be something to investigate further, but!

    xNTP,

    Your entries are intriguing and make me curious on your experiences and findings.

    Why can’t you describe the details and contents of the cocktails you have taken in your multipronged attacks? What did you really take after the PIRADS 3 diagnosis of 2016 that one could link to the lower PSA of February (from 12.7 to 9.7) and downgraded PIRADS 2 of 2018?

    I would think that both mpMRI were done with the same predictive program (Version 2) so that one can trust the results and the down gradation. It all looks good but I do not understand why you do not inform us about the source of the achievement?

    It seems to me that what you did was off-label under professional guidance from reliable researchers. I cannot see any wrong in keeping names out of the conversation but you can share more details on the issue for the good of everyone here.

    Can you tell us more about you and those involved in your experience? What’s your age? Apart from BPH and/or PCa what were the other illness/condition that you aimed with the nutraceutical combination cocktail? What was in the mix and how did you take it?

    Was your experience using 5-FU to treat a different cancer (a different person) that you compared to PCa?

    Along my 18 years of survivorship I have done incredible researches on matters starting at lab trials phase 2. I have read many studies on various subjects which results are the conclusion of my posts in this forum, trying to help the many. I would like to discuss more about those add-ons for improving multimodal therapies you discuss above but your post leaves me with more questions on your knowhow.
    Can we reach a middle term?

    Thanks for arousing me the interest in investigating other modalities in my treatment.

    Best,

    VG

  • Georges Calvez
    Georges Calvez Member Posts: 547 Member
    Tongue in cheek

    Hi Vasco,

    I was being a bit humourous because xNTP was being so secretive.
    I have done some research on neutraceuticals, diet and exercise in the treatment of prostate cancer and I feel that you can gain some benefit from regular exercise, changing your diet, etc, even if you do not, there is no harm in trying.
    I am relying on my conventional treatment and taking a few vitamins and a more healthy diet as a supplement, it has had a side benefit insofar as my wife has to eat the same as me and she is looking slimmer.
    Certainly if you have mild BPH only I would give things like this a try, there are lots of products on the market in France that claim to shrink the prostate with herbs, etc, whether they work or not is moot.
    I am not going to give the web addresses but there are no shortage of places that will sell 5-fluorouracil to anyone with a credit card and a verified shipping address so one could go off piste and treat oneself with a home made cocktail.
    A bit wild but I knew a guy that disabled the door lock on a domestic micowave oven, he then put his head in and gave himself a quick zap, amazingly he survived this but it has had permanent effects in terms of impaired vision and blackouts.

    Best wishes,

    Georges


  • xNTP
    xNTP Member Posts: 38 Member
    edited October 2018 #41
    preps to going off road
     




    Why can’t you describe the details and contents of the cocktails you have taken in your multipronged attacks?....Was your experience using 5-FU to treat a different cancer (a different person) that you compared to PCa?

    Yes, the vast majority of my experience is with another's seriously metastatic solid cancer, "going off road" (very successfully). I am a newbie, wanna not be here on PCa but....  In part I speak in generalities because of the change in cancer AND the spread of stages of cancer here.  I dont want to make magical claims on any substance(s) that people go off half cocked.  Rather we should construct the tools to personalize chemistry, evaluate those results, and share results more effectively. 

    Georges, the real deal nutraceutical numbers with measurable or observable cancer changes are a little shocking to the unfamiliar. What we often see in common internet sites, everyday life, and forums are those "polite treatments" to idle experimentation that I mentioned earlier.  Vasco, 5FU as a recognized PCa modulator is a possible treatment component for refractory PCa.  I am better read on  some 5FU drugs than PCa and realize that 5FU is not being well tested, personalized and timely optimized in PCa.  I've been down this road before.  My opinion of oncologists' experimental technique is rather low due to wasteage and lack of timely results.  In my view, if  intelligent mice ran the lab, things would be a whole lot different.

    I am trying to lay a better groundwork for technically based treatments and  for sharing those n=1 attacks and experiences, going offroad DIY.  Oddly enough, I may have more experimental commonalities at my beginning, with VG, than those in the middle course of regular treatments although improved chemistry is important to everyone.  Again, I encourage people to read Ben Williams' story, his technique has a lot of commonality for me and it is a good intro.