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Oligomicrometastatic cancer

VascodaGama's picture
VascodaGama
Posts: 3033
Joined: Nov 2010

Micrometastases

I wonder if we ever manage to identify and locate the tiny little buggers we call micrometastases. I would appreciate receiving opinions or any information you, ladies and gentlemen of this board, know or have found in your researches.
Unfortunately, I was again told that I have them and that, in my case, it will be difficult to radically eliminate the cancer with spot radiation as I have been hoping. I guess that now I may start using the term “oligomicrometastatic cancer”, to identify my case.

This week I had an 18F choline PET exam and was told by the attending Nuclear Medicine Physician Dr. Frederik Jonge (a 27 years veteran in the trade) that the whole body image does not identify cancer. He commented to believe that I have micrometastases which are hard to be found by radio nuclear isotopes (this comment surprised me). He proposed to give a second look but his final judgment on the images provided in the PET is that to be negative for adenocarcinoma.

Surely I will wait for his second looks but I also plan to get second opinions of other nuclear doctors. However, his comment gave me the impression that if the cancer does not spread wider I will never get a picture of the bandit. This is a big blow in my hope for an oligometastatic treatment to try and eradicate the bandit for good.

The first doctor diagnosing me with micrometastases was the oncologist Susan Slovin at MSKCC, back in 2002, but she was just guessing her opinion on my status. There was not much information or knowledge on the condition at those times. In fact the group of PCa specialists where she belonged was at that time engaged in qualifying the outcomes of salvage therapies comparing the results of earlier against latter attacks. Slovin was studying a series of recurrence cases all with different patterns of aggressivity and in one of her papers she defines the now famous term used by many physicians “6 months” as the longest period one could way till starting a salvage therapy.
She told me that micrometastases, even made up of low aggressive Gleason rates (<3), could be grouped with the worse cases in terms of difficulty to treat.

Many of the participants in this forum know about the details of my case from previous threads (links below). I will just add that along 2017, my PSA has risen reaching the value of 2.05 ng/ml (T=329), in the beginning of December (Sep; PSA=1.78 / T=306) which lead to the PET exam. This PSA level of 2.0 is recommended for 18F choline nuclear images if one wants to assure a positive image result. That was my aim this time and the reason for waiting the PSA to increase. Meanwhile, the cancer had a free ride but I will restart ADT and knock it down again. I got the impression that I failed and the bandit won.

My doctor wants to restart ADT with a PSA of 2.0 but I am tempted to allow extra time and let the bandit to continue in its frenzy parties of testosterone cocktails letting the PSA increase further to try again with a more sophisticated image exam such as the PSMA PET exam which I trust to be better than the F18 CH PET, but unfortunately, on this date this exam is not yet approved by the National Health (European) so that one would need to go private to have it, and this is not cheap. Another pitfall is that the exam may fail again because it depends on the characteristics of one’s case. So far many PSMA trials have been hold around the world (in the past 4 years) showing several isotope combinations that were better in delivering the PSMA (dotatate). One needs to choose the clinic using the modeling tracer (chelator of radionuclides) most appropriate to his own case. We need firstly to get a doctorate in the field for not erring.

My history of the past 5 years in these links;

https://csn.cancer.org/node/268900

https://csn.cancer.org/node/290854

Basic introduction of Image exams;

https://www.dovepress.com/cr_data/article_fulltext/s45000/45315/

F18 presents better image in lower resolution PET machines. A comparison of two modalities in this link;

https://www.ncbi.nlm.nih.gov/pubmed/26013479

My next appointment is scheduled for October 2018 so that I have time to see how things unwind. Surely before that I will decide on something.

Best wishes for 2018 to all comrades of this forum,

VGama

 

Tdoyle
Posts: 36
Joined: Oct 2017

Sorry to hear about this news....

All the best to you

Troy

Old Salt
Posts: 720
Joined: Aug 2014

but I wouldn't call this finding a 'setback'. Your cancer has been under control without drugs for quite some time. And your strategy to not do anything until the PSA crosses a certain level makes sense.

Sit back, relax, enjoy a nice glass of (Portuguese) wine and take the dog out for a walk (not necessarily in that order).

And thanks for all you do to make this Forum 'worthy' .

Clevelandguy
Posts: 462
Joined: Jun 2015

Hi Vasco,

Let me first say thank you for all of your great input to this board.  On your case I agree that you have to find the cancer before you can treat it.  Might be wise to let your cancer "develop" some so you can find it with the scans.  If not the only othe thing would be some chemo to "nuke" your whole body which does not sound very pleasant.  Good luck......

Dave 3+4

contento
Posts: 76
Joined: Jul 2017

Vasco, I wish I could offer great advice but from a knowledge standpoint I can't. Just not knowledgeable enough. My sense would be to go back on HT .

My rhetorical  questions are :

 Why did you choose  2 ng/ ml  as your target ? Is  that the point of no return ? If you waited till you hit 3 ng/ml to do the image studies  would the HT still be effective ?  Even if the micrometastisis can be seen is it still curable ?

I certainly would not have the guts to let the cancer grow. With my luck it would be in ten different spots. For me I would continue on the HT.

I know everyone on this board wishes you the best and hope you make the right decision for your situation.

Good Luck -- contento

Old-timer's picture
Old-timer
Posts: 196
Joined: Apr 2011

This part of your story, I do not understand. What I do know, and understand, is that, as always, you have my eternal good wishes. Should I say more?

Yes, I am here with you.

Old-timer (Jerry)

VascodaGama's picture
VascodaGama
Posts: 3033
Joined: Nov 2010

I want to thanks to all above posters. You are in my thoughts. I appreciate your comments and hope you too are fairing well in your own struggle with the bandit.

I received a second opinion and second look into the F18-choline PET/CT exam and the good news in the report is that they have not found far metastases or bone involvement. These two negative items would make thinking that I have no systemic disease yet. However, such would be real if micrometastases have not been diagnosed before. Micrometastases may exist but are so tiny that scans do not detect them. These buggers can grown later into apparent metastases if not treated and killed.
The bad news in the report is that they found “viable neoplasia tissue” at the prostate bed, the fossa (which was part of my SRT of 2006) and found abnormal activity at two inguinal lymph nodes on the left. The SUV at the fossa was at 10 minutes 3.4 which increased to SUV 5.5 at 80 minutes in the whole body image. The suspected LN involvement on the left had a SUV 2.0 at 10 minutes and 3.6 in full body image. The second LN presented a SUV of 1.8 but no activity later which could be judged as inflammation. No other relevant absorption of Choline at other relevant places including bone.

Typically, SUV of 10 regards cancer. SUV of 4.0 regards cells with anomalies. The meaning of viable neoplasia tissue refers to an abnormal growth of tissue caused by the rapid division of cells that have undergone some form of mutation. This could mean cancerous cells that could turn into a tumour. The strong uptake of choline could also refer to inflammation. Here is some explanation on the term;

https://www.sciencedirect.com/topics/medicine-and-dentistry/neoplasm

The above report from two nuclear physicians does not present any recommendation. My next step is in the hands of my uro-oncologist but I think that only radiation would be feasible to attack the fossa and the lymph nodes with intent at cure. This is the purposes of oligometastatic treatment and I am curious to hear what he says, however, before meeting him I plan to have a consultation with the radiologist of my previous SRT (2006) to be certain on the risks of “rads over rads” if the area involved received already the full dose in limits of radiation absorption. He has the isodose plan used at that time and knows what was radiated.

Unfortunately, the findings regard previous treated areas and not spot tumors located at propitious places. As you may image, I am very concern with fistulas or chronic wounds at the colon and bladder due to additional radiation which would prejudice much my quality of living.

Recently I have experienced abnormal bowel movements giving me very short time to get to the toilet. I also experienced more frequent urination with traces of blood. All of this seam to relate to late side effects from the radiation. It could be inflammation of the scar tissues and that could also be part of the SUV (choline) uptake in the PET scan. I have requested a colonoscopy to my GP to get more details on the cause of above BM. I also got a PSA which for my surprise turned lower at 1.68, down from 2.05 ng/ml of two months ago. I am again far away from the end of the vacation period of my IADT.
A friend oncologist will try to put me into a 68Ga PSMA PET exam.

Will keep ya informed of any future development.

Best,

 

VGama

 

contento
Posts: 76
Joined: Jul 2017

Thanks for the update Vasco. I'm sure I can speak for everyone in that we all wish you the best in your journey and thank you very much for all the advice and support and encouragement you provided over the years. Continue the battle , your strong, your smart and I have faith you'll do well. -- thanks Vasco

hopeful and opt...
Posts: 2226
Joined: Apr 2009

Wishing the best for you.

My prayers and thoughts are with you, for recovery.

Pan
Posts: 1
Joined: Feb 2015

Hey Vasco ... you wrote:

I wonder if we ever manage to identify and locate the tiny little buggers we call micrometastases. I would appreciate receiving opinions or any information you, ladies and gentlemen of this board, know or have found in your researches.
Unfortunately, I was again told that I have them and that, in my case, it will be difficult to radically eliminate the cancer with spot radiation as I have been hoping. I guess that now I may start using the term “oligomicrometastatic cancer”, to identify my case.

 What you describe is not "oligo" at all. "Oligo" means "few".  You have zero visible mets and an unknown number of (possibly many) micromets. I am in the same boat and have been advised to go ahead with systemic treatment (ADT) as there is no way to spot treat with radiation or surgery excision when there are no spots detected.  Yet, my PSA is doubling every 6 months or so. When I had my Gallium 69 PSMA PET scan a few months ago, I was kind of hoping for mets so that my RO could zap 'em. 

Old Salt
Posts: 720
Joined: Aug 2014

The term 'oligomicrometastatic' has no (generally accepted) medical meaning and shouldn't be used.

VascodaGama's picture
VascodaGama
Posts: 3033
Joined: Nov 2010

Thanks again for the well wishes and the opinions.
Pan, you are right. The term “oligomicrometastatic” doesn’t exist. This was created in my mind probably to make me believe that I am over the topic and that I know what is happening. This gives me the strengths to be above the bandit and knock it down. ADT is already reserved. I am just investigating any possibility in deceiving the bandit with oligometastatic treatment.

The PET scan did in fact identify neoplasia tissue though to be cancer. However, I believe that the PET exam did not detect the whole cancer. The unseen little ones may develop into big ones in the future leading to additional recurrences. In any case, for people like you and me, the theme Oligometastatic (a fewer number of tumors, 5 max) may be thought as an additional phase in the sequential therapies post failed radical and salvage treatment, before one succumbs to ADT and chemo. There is no proven cure with the subject but the practice has been most successful in extending the period on free-biochemical failure. The lucky ones may hit the jackpot when irradiating the solo existing tumors. Cure is the aim and it can be in the horizon. Surely one should never put into jeopardy the quality of life so that such a treatment should only be done if propitious areas are identified.
In such regard, some of our comrades here have done this sequential by repeating the radiation treatment extensively, not just covering a fewer number of metastases but treating an identical number of areas/spots with identical dose. Dattoli, Sarasota, has been doing this sort of late salvage therapy.
I wonder about your story. Can you please provide more details on the results of the 68Ga PSMA PET exam. What was your PSA at the time of the test? Do you have still the gland in place? What is your present PSA histology?

Two days ago I had an interesting meeting with the radiologist/therapist who did my SRT of 2006. He was surprised with the F18 choline PET indicating “possible recurrence” at the prostate bed (radiated fully by him before). I felt that he did not want to admit RT failure at the areas of 2006. He thinks that the increase of the PSA is from metastases away from the area identified at the scan, and that the detection was due to inflammation. The truth is that other areas did not accumulate high SUV. Denying the results is like not trusting the capability of F18 choline PET exam in PCa detection. Am I right?

According to this radiologist, radiating any apparent metastasis even if that is located at areas already irradiated is valid if the irradiation had been done 5 years before. The risks of “rads over rads” on my case of 11 years post SRT is dismissed because radiated tissues are thought of having recuperated fully. The limits of radiation absorption are not an important issue in my treatment. In any case, before any RT treatment, he recommends to check the condition of any existing scar tissues from previous radiation. I am scheduled already for a colonoscopy and cystoscopy.

If everything is found normal, and we decide on radiation, then he recommends me in having the 68Ga PSMA PET/CT scan at their facilities which CT computer data can then be introduced in their Truebeam RT system for mapping the field to be radiated. Everything fits perfectly but I just wonder if we can trust more such PSMA exam than the F18 choline done with a PSA level of 1.80 ng/ml. I hope someone here can give me ideas.

Another surprising conversation from the radiologist was about his recommendation on a hyperthermia application to improve/strengthen the immune system. It seems to be common advice at radiation facilities to RT patients. He suggested having the hyperthermia now before the next PSA. Why?
I know that hyperthermia is recommended as an adjunct administration to enhance the effects of prime therapies like ADT and chemo. Less resistant hormonal dependant cells may be killed.

http://jcmtjournal.com/article/view/2272

 

I left a copy (cd format) of the F18 PET for him to check and provide me with a second opinion.

Thanks to all of you.

Will keep ya informed of any future development.

Best,

VGama

 

hewhositsoncushions
Posts: 279
Joined: Mar 2017

Vasco

Your comment about hyperthermia made me think of something. Hypothermia.

Have you heard of Wim Hof? He is the guy who can clmb Mt Everest in his undies.

Apparantly his breathing and cold water acclimation excercises have a really good effect on the immune system.

Unfortunately there is a bit of a cult around him but there is hard scientific evidence that his methods do work.

C

VascodaGama's picture
VascodaGama
Posts: 3033
Joined: Nov 2010

This April celebrates my 6 years since I stopped ADT and started the long period OFF drugs. I am free of the ADT side effects but the bandit has been gaining ground at the place it hides. The PSA that was <0.02 in April 2012 is today (Apr 2018) 1.83 ng/ml. Along these years of continuous increase I saw it fluctuating reaching at one occasion the mark of 2.0. I have no prostate in place so that bounce is not expected to occur. The doctor following my case has no explanation for the fluctuations, but there is that theory that metastatic cancer takes long before it settles at a different tissue. Our immune system prevents cells from travelling and fixing at areas where these do not belong.  Unfortunately, some manage to escape the screening and, in time, progress invading newer environments and forming tumors/colonies.
I would think that the occurrence most likely cause sort of bounce in the PSA if let alone.

Since my last entry in this thread, I have done a colonoscopy that found radiation proctitis in addition to diverticulitis. Radiation proctitis can become a barrier for additional RT in the area. Radiologists do not recommend radiating areas twice when proctitis are found because of the risks for fistulas. I have still a cystoscopy to be done to check the urethra and bladder condition but lately I have been experiencing cases of hematuria, which makes me think of radiation cystitis. These would surely prohibit an oligometastatic treatment involving RT.

If my doctor disqualifies me from radiation therapy for the findings then I will try discussing with him about the possibility in dissecting the infested lymph node identified in the PET exam I explained above. I can then restart the newer period on drugs as defined in the IADT protocol of 2010. ADT has worked before and I believe it will work well again.
I have been reading a lot about rads over rads and it seems that the risks of radiation are greater than the benefits when considering the quality of life.

Wishing the best to all comrades.

VG

 

lighterwood67's picture
lighterwood67
Posts: 213
Joined: Feb 2018

Well, comrade, I certainly wish you the best in this journey.  I really do not believe this journey is ever over and no two are a like.  You have set yourself up with your core knowledge.  To be honest with you, I would hate to be your doctor because in some cases you seem to be more knowledgeable then they are.  So here we go, a decision will need to be made based on our best options weighted by quality of life.  This decision belongs to you and you alone.  So best of luck to you.

Clevelandguy
Posts: 462
Joined: Jun 2015

Hi Vasco,

Good luck on your continuing journey with Pca.  If anybody can find a way past this it's you, you have a lot of knowledge in this area.  Are there any type of new immunotherapy procedures that let your body use it's own defenses to atack the cancer?  See the link: 

http://www.cancerfightersthrive.com/immunotherapy-using-your-own-immune-cells-to-fight-cancer/

Dave 3+4

Old Salt
Posts: 720
Joined: Aug 2014

Difficult case, that's for sure. One option is to do nothing at all for the time being and maintain a relatively good QOL. But I gather you are inclined to be proactive (which may not be the right word). Anyway, best wishes with the decision on how to proceed.

VascodaGama's picture
VascodaGama
Posts: 3033
Joined: Nov 2010

Thanks for the comments.

Dave;

Along my history with the cancer (since recurrence in 2001), I have come across many studies regarding the capabilities of our body’s built-in defense system to tackle the bandit, Not deeply but I have followed trials involving the immune system to treat prostate cancer. They all tend to address the idea of creating the means to force an attack instead of just defending (palliative). I recall one in 2001 that involved a typical cold-virus mixed with cancer cells so that those could be recognized and get killed with an immune response. This was the start of immunotherapy that included vaccines principles. Transforming cancer cells into targets using radioisotopes was also used in the development of the newer image exams. The radio tracer apart from identifying/locating the microscopic cancer it can kill such a cell it attaches to on-the-spot, depending on the radio-substance used in the action (LU177 has been used to treat several types of cancer). Provenge was born from there and so it was the ProstaScint therapy.

The link you provide above steps into the genetics of cancerous cells. Just like the PSMA unique of prostatic cells it uses the DNA to identify those bandits turning these into targets for our immune system’s attack. The principle of the therapy is the same but it requires having an immune defense in-shape to have the best results. Cell's receptors used as targets will require the therapy to be done before chemo or ADT as these are known to affect both; deteriorate the immune system and transform/mutate cell's receptors. I think that Gene therapy cannot aim in combination treatments.

The Immunotherapy in fact is not new but it has not been as explored as it could in cases involving cancer. Hyperthermia and hypothermia that invokes an immune reaction was very much used by our ancestors to treat several maladies. It is very much used today in treating simple colds or fever. These are disguised in saunas or icy baths that cause a sense of well being if not just a good feeling. Some studies, done to ascertain the benefit of such ancient therapy found that hyperthermia used in combination with ADT and Chemo provided better outcomes. Nobody knows exactly what the cause for the improvement is. It could be due to an attack by the immune system or an enhancement of the administered drugs.

Nobody has claimed yet victory. We need yet to find that silver bullet.

Best wishes to all my fellas.

VG

VascodaGama's picture
VascodaGama
Posts: 3033
Joined: Nov 2010

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 

Old Salt
Posts: 720
Joined: Aug 2014

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.

Georges Calvez
Posts: 297
Joined: Sep 2018

Hi Vasco,

Best of luck, if anyone knows how hard battling PCa is, it is you.
It will be my birthday on Monday and I will think of you as I raise a glass of Tullamore Dew.

Best wishes again,

Georges

Josephg
Posts: 165
Joined: Jan 2013

I well understand your concern regarding changing doctors in the middle of a battle with the bandit.  A few years bacy, my original Oncologist left the practice to do research only, and I was referred to another Oncologist.  In some respects, it is like starting over again.  Developing a new positive relationship and building the needed trust with the new doctor takes time, and while a positive outcome in the new relationship is likely, it is not guaranteed.

I wish you the best outcomes in this new phase of your journey.  As Georges stated, nobody on this forum is as well informed, knowledgeable, and better prepared to transition and move forward on this new phase of your journey, than you are.

G53
Posts: 33
Joined: Jul 2018

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's picture
VascodaGama
Posts: 3033
Joined: Nov 2010

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's picture
VascodaGama
Posts: 3033
Joined: Nov 2010

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
Posts: 33
Joined: Jul 2018

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
Posts: 297
Joined: Sep 2018

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

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lighterwood67
Posts: 213
Joined: Feb 2018

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
Posts: 21
Joined: Dec 2011

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

     

 

 

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VascodaGama
Posts: 3033
Joined: Nov 2010

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
Posts: 34
Joined: Oct 2016

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's picture
VascodaGama
Posts: 3033
Joined: Nov 2010

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
Posts: 34
Joined: Oct 2016

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's picture
VascodaGama
Posts: 3033
Joined: Nov 2010

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
Posts: 297
Joined: Sep 2018

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's picture
VascodaGama
Posts: 3033
Joined: Nov 2010

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
Posts: 297
Joined: Sep 2018

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
Posts: 34
Joined: Oct 2016

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's picture
VascodaGama
Posts: 3033
Joined: Nov 2010

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
Posts: 297
Joined: Sep 2018

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
Posts: 34
Joined: Oct 2016
 

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.

VascodaGama's picture
VascodaGama
Posts: 3033
Joined: Nov 2010

xNTP,

When you mentioned on “conveyor belt urologists” I recalled one survivor at the HealthBoards forum who compared urologists to ducks in their while gowns. His opinions fit well the subject of your conversations. We discussed openly about the add-ons he used in his intermittent ADT3 treatment that were providing him with longer period off drugs in his intermittent approach. He was/is a Gleason 7 but chose to treat using only ADT, done successfully during more than ten years. Thalidomide and Celebrex were his main add-ons. The treatment included concomitant three blockades with Lupron, Casodex and Finasteride.

I also do not like conveyor belt type urologists but it is difficult to find one that goes off label. In fact, specialists rarely discuss add-ons unless these are from multi-disciplinary clinical trials or have been recommended by their urological associations. Some of my golf buddies are doctors (different specialties) and I never saw them discussing medicine along the 5 hours of play. There is this consensus among doctors to never contest the other’s opinions. Sometimes they ask me about my discoveries on PCa affairs.

Traditional, medical oncologists are the ones that use add-ons to improve main treatments, in particular the ones using chemo drugs. Myers and other famous oncologists by experience and researches done along their careers use these sort of multimodal therapies (for instance the ADT3) adapting the add-ons (some nutraceuticals and some pharmas) according to the necessities of each individual patient. I know that at least an immunomodulator is incorporated in their cocktails. However, they know well the details on interactions so that they can monitor and regulate doses along the therapy. Urologists would never adventure such rough-waters.

I have thought before in thalidomide to add my continuing ADT. This drug avoids the formation of newer blood vessels which is required by the cancer to develop further. Celebrex is a COX2 inhibitor that works similarly to Aspirin, therefore avoid inflammation initiated in the formation of newer blood vessels. Aspirin was recommended by my oncologist at JH and I started taking it since 2001.

Going off road, I wonder if the road you have been down before involves the clinical trials on 5-fluorouracil for refractory PCa (1996-2001)? In those trials they did not find substantial evidence that it works well with PCa but the chemo was FDA approved for breast cancer (and others) which shares the same genes as prostate cancer. What is missing?

I am eager in reading your “technically based treatments” you are now working on.

Best wishes,

VGama

 

Georges Calvez
Posts: 297
Joined: Sep 2018

Hi Vasco,

I think you are dealing with the great divide between medical professionals and researchers.
Most doctors and pharmacists like to stick to what they know will work, they are not that bothered about how it works, try talking to the average doctor about genes or endocrinology and the eyes quickly glaze.
Pharmacists collect vast libraries in their heads of drugs, illnesses and side effects, etc. Ibuprofen, tak; used for headaches, period pains, mild athritis, risk of intestinal bleeding, renal toxicity not more than three boxes of 20 x 200 mg at a time OTC, no under 18 sales.
At college they should learn some basic biochemistry but most do just enough to get an OK grade, why do more. All the pharmacy law is far more relevant and making a mistake in this area can result in an end of career event.
My team is quite focused on RP + radiation + ADT specifically degarelix for advanced cases because it has worked for them recently.
If a new paper in a big urology journal appeared with a Lupron, zinc, Celebrex, cocktail that had good results they might give it a whirl but they are work a day doctors trying to cure patients not researchers.
I suspect that particularly in the States, doing your own thing, trying something new is a good way to change your career from medicine to accountancy or such like for the average Dr Joe.
There are teams trying out novel combination therapies, here is one doing a small trial with advanced PCa using abiraterone-cabazitaxel with quite promising results, but they tend to be in teaching hospitals or research institutes.
https://www.icr.ac.uk/news-archive/prostate-cancer-drug-combination-shows-promise-in-early-trial
One problem with thalidomide is its bad reputation, you need a good reason to touch it as it can pull in a lot of flack for no good reason.
Stick thalidomide on a medical research application and the bar to getting it approved has just gone up, if it is to be used in women of child bearing age it has just gone up a lot.

Best wishes,

Georges

Georges Calvez
Posts: 297
Joined: Sep 2018

Hi there,

One of the problems with prostate cancer is that hormone therapy is so good that it is hard for other drugs to compete.
If you compare hormones with radio in prostate cancer with chemo plus radio in most other cancers the results are really good and the side effects are much less.
Also hormones can hold an advanced cancer for years, often decades.
Prostate cancer only kills 3% of the men who have it, a lot of cancers have kill rates like 30+ % or death is almost certain if you have an advanced case.
The current treatments are very successful, with more screening coverage we could catch it earlier and cut the patients having serious side effects even further and the death rate to close to zero, although there is the counter argument on un needed treatment.
Thus the bar to a new therapy getting into the arena is high.
If a general therapy that offered a real advance was developed it would be quickly adopted but it seems that at the moment no such break through is in the offing.

Best wishes,

Georges

xNTP
Posts: 34
Joined: Oct 2016

 I am better read on 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..

No prior 5FU-PCa experience.  I have read over a thousand  papers with 5FU drugs and cancer (thousands of cancer papers, myriads of abstracts), read with a different center of cancer focus but not exclusion.  So I had read some about 5FU trials for PCa and they looked reasonably like earlier eras in other cancer - later geniunely useful but needed more work (or practical insight) with technique and other modulators. 

In our situation, stats were essentially 0% OS at 24 months with 5FU and 2-3 other chemo drugs without new genetically engineered drugs and a newer, lengthy, highly specialized surgery.  Even before this was fully communicated, we extended an obscure,  nicer 5FU drug in various ways, from binary component trials in humans, single component data, 5FU/analogs for other cancers, preclinical data, and directed, personal data generation over several years.  This effort was most intense before chemo and the first year of chemo and surgeries, then more routine in following years. "Virtual trials", at n=1, typically means phase 2 (on components) or often phase 1 for specific combinations, with only one mouse and many trials to do....  Nutraceuticals (and 1-2 mild off label drugs) allowed us to hot rod 5FU to do things, with more range beyond std of care, with side benefits instead of (nasty) side effects of the other chemo drugs. 

Deciphering my comments: 

Multimodal treatment:  immune therapies, chemotherapies, surgery, radiation, thermal, cryo, others many abalation

Multicomponent [chemistry, treatment]:  nutraceuticals +-  chemo +- HRT +- biologicals 

 In fact, specialists rarely discuss add-ons...

Yes, once they are out of options, we don't like the stats, treatments, or their answers... then we have to dig it out (y)ourselves.

 ...What is missing?

Accumulating old research, including clinical bits/experience of lower evidence quality, and a high quality data series for you and the bandit.

VascodaGama's picture
VascodaGama
Posts: 3033
Joined: Nov 2010

xNTP,

You are again stepping in with intrigues. Can’t you say what nutraceutical were used and list the off label drugs?

I do not think that someone reading your post willgo off half cocked”. This is a prostate cancer forum and your experience relates to a different cancer of different characteristics. Even if such an idiot would try to imitate what your “friend” did, the successful results in those side benefits represent a step forward in good medicine, worth checking before committing. Survivors of this forum are exactly giving opinions based on the evidences that they have experienced in the fight against the bandit.

You are right in recommending the many to dig out by yourself. We all should get educated on the problem even if that represents only a fraction of what doctors know. Knowing in advance what to expect gives us peace of mind when talking on the matter.
I have learned that doctors avoid becoming teachers of medicine when in consultation, and I do understand their reason. Nobody could explain the intrigues of cancer or why treatments mange to kill in such a detail, in just a mere 30 minutes of consultation. By motto doctors do not want to fail. They tend to deal with the conclusions, resuming the steps to take and covering the major consequences. Any comment or suggestion by the patient that would disturb their settings may be accepted or are simply grouped as “still in trials not yet confirmed”. Those more logic opinions get the “we can try it after”.
I can say today that usually I am well prepared to discuss with the doctor the matters of concern or medications during the short time of the consultation. I got my list of questions based on evidences and do not inquire on trivial things. They like educated patients as it avoids teaching.

My knowledge on PCa was driven by my urologist on that day when we meet and he asked me “have you decided?
Decided what? I thought you decide for me. You are the doctor….! No, I just help you in what you decide. Go home and come again when you know what you want….

That happened in May 2000, and I am ever since reading and studying the intrigues of medicine. How our body reacts to an illness and the sequences that such an intervention unchains. In conducting my disease I try being the captain allowing the doctor to be the commandant.

I am a retired engineer used to deal with the stress involved in huge projects. I see you more as an individual connected to the medical world. Am I correct?

Best,

VG

 

VascodaGama's picture
VascodaGama
Posts: 3033
Joined: Nov 2010

George,

As of today I am not aware of a drug that guarantees cure in prostate cancer. Each type of treatment got its successes and falls and do not compete against each other in terms of cure. That much wanted Silver Bullet is yet to be found. Some guys comment knowing that the big pharmaceuticals are holding away medications that cure but such is not true. Researchers are in fact working trying to find that thing that manages to get to those malignant cells, destroying them (and only them) for good.
That is the challenge; trying to kill the cancer without killing the patient, by saving as much good flesh as possible. In such regard, it is necessary to stratify the bad flesh from the good one and then strip the infested out or attack it in place ransacking its living capabilities. I wonder if you meant to say competition among treatments.

Combination of drugs that address different paths (multimodal treatment) is leading us to a better approach but not to a dead end. Gene therapy may be the answer to treat with intent of real cure. I can see laboratories around the world competing to such discovery. Several steps have been done but still far to have it as a concrete measure. Meanwhile we must endure with what is available trying to extend our living moment to celebrate that day when the Silver bullet is announced.

Going deeper, I hypothesize that the switch to disconnect the living capability of malignant cells is there but not yet found. Researchers are close to it as they now recognize the switches that assure living to a cell when its existence is threatened (eg; by a present treatment). This starts of a series of mechanisms acting instantaneously to try repairing the defect. What are the strands regulating such instructions?

Genomics will in fact substitute all screening processes used in cancer. You got it or you don’t or you can modify it if interested.

Best,

VG

xNTP
Posts: 34
Joined: Oct 2016

Can’t you say what nutraceutical were used and list the off label drugs?

I am loathe to simply list from another cancer, despite the majority overlap.  I've already eliminated one generic drug for clear cause. My starting point for considering a cancer is from several lists, like the Life Extension lists. Then build out with more heavy duty, specialized drug/nutraceutical  treatments that have a good story or papers, backed up with targeting and evaluation methods.  People don't take critical measurement and evaluation steps seriously for real time results, not even doctors.  Without it, people are just serially guessing and have little chance of substantial sustained changes in my observations elsewhere.

Life Extension: https://www.lifeextension.com/Magazine/2013/12/A-Natural-Arsenal-for-Prostate-Cancer-Prevention/Page-01

To me, a working treatment for advanced cancer might be

[a careful choice of one old PCa cancer drug] and/or [a select chemo drug] and a list of CAM formulas [off label drugs; nutraceuticals].  The starting place and a good convergent method are ciritical.  Undertreatment means a moving target.  Without extra surgery, we might have failed, I was able to stomp a nasty, exponential marker and stop metastasis to everybody surprise, but I knew that we needed surgery to remove surviving locations that still had another marker moving even if rising slower. 

 

...more as an individual connected to the medical world. Am I correct?

It is fair to say, where people see me (days, weeks, months), they often think I am a specialist in that area or group,  if there is a chemical or biological angle. In real life, I may follow industrial "expert failures" that occurred before me, where disaster, bankruptcy or prison have been real possibilities if there wasn't a huge turnaround in a system with complications. The younger me was aways disinterested in medicine, however my medical exposure is growing by the decade, this last decade responsible for several family members.  But I am just a draftee in the war on cancer.

VascodaGama's picture
VascodaGama
Posts: 3033
Joined: Nov 2010

xNTP

Your last sentence impressed me. I would like very much to be enlisted in that war too.

Thanks for the list of natural compounds said to influence the behavior of prostatic cells (for the good or for the bad). We have in the past discussed about some of these compounds in this forum but apart from vitamin D, E and K, we seldom read about people taking them in pill form (supplements). There is a tendency by the many in getting the benefits of those compounds from rich diets that use those main ingredient. Kampoyaku in fact lists many of those described in the link you provided.
However, as George above comments, these supplements hardly reach to the level of control on the bandit as hormonal drugs do. In my lay opinion, they are not substitutes in such sense but can be taken as add-ons, if not just to calm down the mind of those taking the pill.

My inquire regarding our discussion on add-ons were focus on compounds like the Artemisinin (an anti-malaria plant compound) or radioligands like Lutetium (a metal chemical element) that are used in therapies of various cancers (still under investigation involving prostate cancer), which could include the one confronted by your friend. Something, that rarely is referred in PCa forums. In any case I will not request again the name of your add-ons.

Interestingly, Artemisinin has more than 2000 years in Kampoyaku as a compound to treat maladies like cancer. It was revived into the front medical world during the Vietnam War to treat soldiers affected by malaria. It was the cause for the 2015 Nobel Prize in Physiology and Medicine by Dr. Tu Youyou.
In trials they found Artemisinin blocking the CDK4 which is a switch for survival in PCa cells.

If interested you can read the benefits that the above could have as add-ons in a treatment for cancer;

https://www.youtube.com/watch?v=4Dh9lUbLTX0

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2629082/

https://www.urotoday.com/conference-highlights/asco-2018/asco-2018-prostate-cancer/104862-asco-2018-lutetium-177-psma617-theranostics-in-metastatic-castrate-resistant-prostate-cancer-interim-results-of-a-phase-ii-trial.html

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5355374/

Best,

VG

hewhositsoncushions
Posts: 279
Joined: Mar 2017

Vasco

 

However, androgen ablation treatment is associated with a 70–80% progression rate into androgen-independent prostate tumors within 1–3 years so despite the initial success of this therapy, in most cases, the cancer will relapse as an incurable hormone-refractory condition in which the overall survival is ∼15–16 months

 

Is it really that bad? We keep getting told "yea, HT will keep you going for years" but this makes it sound like CRMPC is pretty grim.

 

H

Georges Calvez
Posts: 297
Joined: Sep 2018

Hi Cushions,

That is not true for most.
Have a look at yananow to find a lot of men on intermittent hormone therapy that go on for years.
There are a lot of long term survivors on here too.
There are key factors like Gleason score; the cells in Gleason 7 cancers just do not seem to have the guts to make strong metastases whereas Gleason 10 cancers seem to metastase quickly.
But there are factors that no one yet understands, some people seem to have an immune system that does a far better job of chewing up outposts than others.
You are not going to go from a cancer that no one can even find to brown bread that quickly!
Keep the faith, have a beer!

À bientôt,

Georges

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