Survey Of Men Who had been In Remiss... - Advanced Prostate...

Advanced Prostate Cancer

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Survey Of Men Who had been In Remission 5-20 years and had a bio-Chemical Failure

Nalakrats
Nalakrats

I would like to have responses as to the title above. The reason has to do with Dormant, or what some call Hibernating or Sleeping Pca cells. For when we are undetectable as to PSA we get a report that says < X---depending on your test. And you get a good to go thumbs up. Now this can go on for years. My MO reports one case of a man who was cancer free for 30 years and his Pca returned with a Vengeance. And yes he did die, from Pca.

Now were any of us cancer free when getting PSA tests, whether the standard, or the ultra sensitive test----> saying undetectable? Of course not. Our Tests and scans cannot detect that which is undetectable. Or another way of saying it our tests are not sensitive enough to detect down to the level of a single cancer cell. So when we have a Bio Chemical failure, you hear the terms: the cancer woke up, or my cancer is no longer dormant, or hibernating.

So then what were the bastards we cannot detect doing? I say they were fully alive and living a new kind of life, after having been assaulted, by our drugs and other procedures. I know 2 men: one went 13 years and one 20 years in remission, and died of Pca. How many died of something else before their cancer might have gone into bio chemical failure? If they lived long enough, would they have failed? I say probably, based on data collected so far in other places.

So I say that these cells we cannot detect, which may have changed form, or maybe not; have been always fully alive, and ingesting nutrition, and going thru their life cycle metabolism. We just cannot see them. I posted a paper 4 months ago on Dormancy, and questioning a way to kill these cells, we cannot see.

So while on summer sabbatical I was collecting Meta-Data on this subject, and would like to ask the group here----> only those who had at least 5 years of undetectable PSA and Scans and considered in Remission, what their status was/is based on the below factors:

We will call a remission as undetectable PSA and Scans

1] Gleason, staging, type pathology, castrate resistance ever yes/no, Mets yes/no,

2] Initial Primary Treatment, secondary if necessary, PSA upon DX

3] Time it took to get to long term undetectability

4] How many years in remission, still in remission yes/no

5] How many years to Bio Chemical Failure, Current new treatment

6] Ever after Failure, confirmed with Neuroendrocrine or Small Cell PSA

Appreciate in advance, I hate surveys on line. But I would hope some will be able to respond, as most on the HealthUnlocked Site have never obtained Long Term Remission. But I am finding, an inordinate amount of long term remissions that when they fail, certain molecular biological cell changes occur, that makes it difficult to catch up with, based on what treatment protocols we have today.

There is some evidence, both drug and supplement, that we might be able to keep the cells that are supposedly dormant while in remission from turning on their attention to dividing their nucleus, and dividing themselves into daughter cells and to start multiplying.

Thanks in advance for the info above.

Nalakrats

36 Replies

For undetectable PSA, can we add together post RP and time on ADT to get to the 5 year cutoff?

Nalakrats
Nalakrats in reply to cigafred

Any add ons I will leave up to individuals--I know what I am looking for.

Thanks

Nalakrats

Nalakrats: what is considered undetectable with so many variable testing techniques. .01 for and ultra sensitive test?

Nalakrats
Nalakrats in reply to Gudgelm

Have to go by the Head of Oncology and Urology at John Hopkins, and LabCorp---> and they say <0.1, I have an acquaintance, who was a Bayer Prostate Cancer Researcher,who got Prostate Cancer and went to less than 0.03--sensitive test, in a year he went to 0.3---> which we might consider Bio Chemical failure, and has stayed at 0.3 for 9 years. Really strange---and he is a supplement hound--I only know some of what he takes. But he is drug free at 0.3--so who knows--Just going to use John Hopkins as the gold standard.

Nalakrats

Prostate cancer is somewhat unique in that it comes in several different grades that we call Gleason scores..G-6, generally speaking, grows so slowly it is easily managed and is seldom if ever terminal..The next more aggressive grade, grade 4, is more aggressive and will, given a little time, metastasize and escape the prostate gland and start new colonies which can be difficult to deal with, eventually killing the patient. The last group, grade 5, are very aggressive, metastasize quickly and easily and in most cases kill the patient. I am a Gleason 9 (4+5) 75 years old. Diagnosed in 2008 after 3 biopsies. Surgery, radiation, ADT, Zytiga kept my PSA below 2.0 for 10 years. Then, quite suddenly, over a 3 month period, my PSA jumped to 230. Dosetaxel pushed it down to 140. then it started to rise again..Tried Zytiga for a month, hoping the chemo had "reset" it..No luck. MO put me on an old line oral chemo, cyciophosphamide (Cypo) for a month while she sets up a fresh set of scans then possibly a fresh biopsy to see if some genetic mapping might be in order..

Fortunately, only about 10% of PC patients are G-9 or G-10. 65% are Gleason 6 when they are diagnosed and don't have to worry about going into remission. the rest are Gleason 7 . The fact is, 25,000 men will die from prostate cancer this year as they do every year..If surgery and or radiation fails to cure PC, and it metastasizes to the bones and nodes, treatment becomes palliative and the clock starts running with your race with the Grim Reaper....

Nalakrats
Nalakrats in reply to Fairwind

So you did not have the good fortune to reach a PSA nadir, that would be considered undetectable, since your DX in 2008. Sorry. Some 9's [4+5] have reached nadirs of less than 0.1 and maintained for a long time, and I am looking for those men, for some research I am working on.

By the way it is I believe 37,000 that die each year. Foundation One is who I used for my Gene Mapping--you can get 800 number from web site--call and speak to a very educated advocate--who can walk you thru the benefits of knowing your Gene Mutations, and if you present certain proteins that can be indicators of certain immunology drugs or processes.

I as a G-9, had myself mapped 2 months after my surgery--and know today what is available to go after my gene mutations--as Foundation One updates you based on new potential drugs based on your individual mutations. So especially if you are up to speed on the Nobel Prize for medicine, this year--it has exactly to do with mutations and the use of a pair of Checkpoint Inhibitors, and how they check the cancer cell from blocking our T cells, so are T cells can get in and eat the cancer. So yes I would get mapped. and you at the same time can find out about things like Pd-1 and if you present this---you may be a candidate for Keytruda, the same immunology drug that cured Jimmy Carter's Brain Cancer.

Lets not think Grim Reaper---I am also 75 years young!

Nalakrats

If I read you right, you are describing micro-metastates; ie, the little unseen bastards that travel through through the lymphatic and vascular systems until they decide to mass and colonize. I was introduced to the term back in 2004 by my research Medical Oncologist. His life work. He also hypothesized that the the transformation from an androgen-dependent to an androgen-independent phenotype is mediated with the expansion of an androgen-independent clone is already present at the time of androgen deprivation.

If his model is correct, then it would be desirable to bring treatment to bear in the androgen-independent component when the tumor burden is minimal. This lays a strong case for adjuvant chemotherapy.

Early and aggressive treatment rather than bidding one’s time awaiting “dormant mutated cells” to wake up and colonize.

I believe that we all realize that currently most wait to use chemotherapy in the hormone refractory prostate cancer setting for a palliative benefit. But, if this bastard can be modified...........

Excellent thought provoking post.

Gourd Dancer

Schwah
Schwah in reply to gourd_dancer

Interesting post Gourd Dancer. My MO thinks out of the box. And when I had 3 bone Mets and my PSA has risen to about 7.5 six years after my focal Chryo treatment for Gleason 8, he gave me chemo, lupron and Zytega. Also zapped the three mets with radiation and I’m doing the zometa / Celebrex (the combo that reduced deaths 22% in trials ) . He thinks by hitting it hard and early he can get a long term remission or dare we say even a cure. I’m 14 months in at .02 PSA so we shall see. Makes sense though. All the recent trials have shown early use of these drugs increases life span. Similar to what they finally found in HIV, perhaps a cocktail of a few of these drugs may be the best answer. Looking forward to hearing Nalakrats thoughts on the leftover cancer cells.

Schwah.

jdm3
jdm3 in reply to Schwah

Are you still on ADT?

gourd_dancer
gourd_dancer in reply to jdm3

Despite my questions, I came off in February 2010. In answer to my questions, he told me that the worse is that my PSA rises and I start a Lupron again. It did not rise.

GD

Schwah
Schwah in reply to jdm3

I am. I will probably go on for another 2-5 months for a total of 15-18 months then go in a vacation. My MO thinks that the studies show no real benefit in my circumstances over 18 months.

Schwah

Nalakrats
Nalakrats in reply to Schwah

I will have a lot to say--this is a new area of research, being attempted by both domestic and Foreign Pca research groups. I am following them closely.

Nalakrats

I agree gourd_dancer. My case is not the norm but what happened seemed to work. My first team offered early chemo with Lupron and that is as far as they would take it as they believed I was not a candidate for surgery. No bone mets but bulky disease in several node chains. After finding a different team and having debulking surgery it was found all of the cancer except in 1 node was gone. Maybe early chemo wiped out all circulating cells and the surgery cleaned up anything contained in prostate and the one node left. Maybe I was fortunate and the timing was just right. Time will tell but nobody thought i would be sitting with a <0.01 PSA and clean scans afterwards. All treatment was done within 10 months. I believe early chemo along with targeted localized treatment is a possible cure for Stage IV if mets are limited.

Ron

Nalakrats
Nalakrats in reply to Dayatatime

Congratulations---Hope and Pray you get many years--but I started this thread looking for men in long term remission---again, may you have not years but decades.

Nalakrats

sounds like the kind of doctor we need. who are you seeing ??

Due to a health issue, he is not currently in clinic. He spends his time in continued research, his Professor duties at a major medical school, and to finish up his research publication.

GD.

I will be up-dating what your Research Medical Oncologist was saying back then. The bastards could be in the blood, and they may have stayed in the Prostate Bed, and elsewhere, after initial treatment, it takes only one Pca cell to stay alive and not be detected.

New research--indicates what maybe turns the Sleeping/Dormant cells on, though they are truly not sleeping, and fully alive and consuming their nutrients, to to stay alive year after year, and then---> something happens!!!!! I am trying to stop the happening--as we may not be able to kill them, without harming the host.

Nalakrats

How would these "dormant" cells be any different than those of failed RP's other than in size. Aren't failed RP's mainly due to undetectable cancer cells. The treatment method might have something to do with the time till regeneration. Cryo- imo- provides the longest period until re-generation. Maybe it's time to thaw Ted Williams's head and see

how many cells come back to life.

Nalakrats
Nalakrats in reply to adlerman

Type treatment may have a role to play in how cells that go dormant return, as to time and also as to form. Failed RP's are not mainly due to undetectable cells. Actually RP's that are successful--will leave cells that cannot be detected because we cannot measure any PSA activity, or cannot be found, by scans. If ADT follows Surgery and the Patient reaches undetectability--again cells that do not show themselves by blood tests or scans are there.

As I have said what is undetectable, does not mean they do not exist.

When men have bio chemical failure it appears what comes back to life may not be in the same form prior to initial treatment. Later on this, I am not prepared yet to write on this.

Nalakrats

Gleason 9 (5&4) Dec 2003. IMRT radiation & Lupron 2004. Initial psa only about 3. Begannwith Dr Myers spring 2004 with Casodex and others I cannot remember as well as Lupron. By 2006 psa indectable with ultra sensitive test. Stopped Lupron and casodex. Avodart maint. 2014 quit taking avodart. Thought cured. Psa started doubling. Went back to Dr Myers spring 2015. Put me back on avodart and added Metformin. Psa came back down but scans showed mets throughout the skeleton. Currently on Xgeva. Avodart. Metformin. Also lipitor lisinopril and aspirin for heart

Superheat 12

Thanks, I have added you to my meta-data collection

I will do my best here. Some results were never given to me, some stuff is lost in ChemoFog.

1] Gleason, staging, type pathology, castrate resistance ever yes/no, Mets yes/no,

Gleason 8 according to current doctors, T3c,N1,M0 or 1depending on definitions, never CR, 4 lymph nodes in pelvic area are "suspect" and never had any treatment.

2] Initial Primary Treatment, secondary if necessary, PSA upon DX,

Initial treatment was RP about 2.5 months after diagnosis. No secondary treatments. PSA was 6.2 at time of RP.

3] Time it took to get to long term undetectability

After surgery, PSA would not drop below 1.9 (I think.) Put on Eligard, dropped to <0.01 quite quickly.

4] How many years in remission, still in remission yes/no

At my Onc's urging, took a vacation after 12 months of treatment. Vacation showed a strong resurgence of PSA, hitting 10.2 after about a year. I was never that high before surgery. Put on Trelstar only. Dropped back to <0.01. Moved to Penscola 3 years ago, kept up same treatment. Quest says I am still <0.1 (as of a couple of weeks ago.) So still (?) on remission. Been just under 7 years now since biopsy.

5] How many years to Bio Chemical Failure, Current new treatment

Never had a BioChemical Failure. Did have Xtandi added to my treatments as a prophylactic treatment about a year ago.

6] Ever after Failure, confirmed with Neuroendrocrine or Small Cell PSA

Not that I am aware of. Again, very hard to get lab results. Still trying.

I hope this helps with your study.

Nalakrats
Nalakrats in reply to Beermaker

Well, your case is one that has but for a short time always controlled by drugs after surgery. Thanks--I am looking for men who have been off all drugs and were or are PSA undetectable for a period of 5-20 years--either maintaining remission, or having Failure within this time frame.

Nalakrats

Using <0.1 for “undetectable,

1. Gleason 3+4

Staging pT2cNoMx

type pathology (?)surgical, adenocarcinoma, Acinar

never CR

lymph node mets from July 30, 2014 Nijmegen scan: 8 lymph nodes, common iliac R 5 and 8 mm, para-aortic L 4, 5, 6, 7, 7, 9 mm

2. RP, SRT, PSA upon DX 5.3

3 Undetectable at first PS, May 4, 2009, 0.02

4. 2.5 years in undetectable before SRT, later SBRT to lymph nodes with 4 mths ADT, then 0.7 years undetectable, then with ADT undetectable starting February 2017 to date, 1.7 years, last 15 measurements PSA=0.02 [total 4.9 years, not quite making the 5-year cutoff]

5. 2.5 years to BCF

6. Not tested for neuroendocrine or small cell

Nalakrats
Nalakrats in reply to cigafred

4.9 close enough--needing a good amount of men, and there are not that many--who have 5-20 years of remission--many left the site and felt no need to participate, and some have passed of other means.

Kind of what I want to do-->on my death bed say at least it was not Pca that got me.

Nalakrats

Hey Nalakrats,

The survey is a great idea to collect some valuable empirical data. In my opinion long term remissions with eventual failure are well in line with cancer stem cell theory. That's what you refer as "dormant cells". It's already been established that tumors of various cancers contain a small population of tumor initiating cells or cancer stem cells (CSC). These cells have stem-like properties like ability to self-renew, differentiate, and initiate tumors. They are responsible for radiation and multi-drug resistance, cancer re-occurrence, metastasis and eventually biochemical failure. These cells are resistant to conventional cytotoxic therapies and they are not killed by standard radiation doses, plus they don't have visible markers of their presence (like PSA in our case). If at least one CSC is left there is a chance it will produce a full blown relapse many years later.

Successful strategies to identify and target CSCs can be a key factor to the prevention of cancer recurrence, establishing remission and potentially eradicating disease all together. These strategies include inhibiting vital CSC signaling pathways like Wnt, Notch, Hedgehog, etc. And it's shown that some existing drugs and natural compounds do in fact inhibit many such pathways and thus helpful for supporting long stable remission. And yes Metformin is on the list :). I think aggressive supplementation program plus genetic features are responsible for the stable remission in your case as well.

This is an exciting emerging direction in cancer therapy, there's a lot of research is going on and some really promising. Until all those pathways and respective inhibitors have been identified and effective ways to deliver them in therapeutic doses developed we can use pre-clinical evidence and test and try using what we know so far.

Here's some CSC information, there's a lot more, but this is just to start:

General:

jcb.rupress.org/content/198...

journals.lww.com/md-journal...

ncbi.nlm.nih.gov/books/NBK1...

clinchem.aaccjnls.org/conte...

sciencedirect.com/science/a...

In prostate cancer context:

ncbi.nlm.nih.gov/pmc/articl...

frontiersin.org/articles/10...

stemcellsjournals.onlinelib...

clincancerres.aacrjournals....

Identifying and targeting pathways:

sciencedaily.com/releases/2...

sciencedaily.com/releases/2...

hindawi.com/journals/sci/20...

wjgnet.com/1948-0210/full/v...

jcmtjournal.com/article/vie...

nature.com/articles/pcan201535

PS:

I apologize for posting this information instead of survey data - I'm not there yet. But I thought it's relevant and not completely off-topic. If requested, I can move to it's own topic.

Nalakrats
Nalakrats in reply to henukit

You are spot on--exactly where I am moving to--some of my working Data may be as simple as to interfere with signaling---But I will definitely study what you have provided--massive listing--Thank you so much.

Nalakrats

Regarding the man in remission f 30 years is it possible that it's not dormant cells but good cells gone rogue due to diet pollution ect in the case of long periods of time best wishes j

Nalakrats
Nalakrats in reply to johnscats

I do not think so---this man was diagnosed about the time of the use of PSA tests--and took tests every 6 months which went to once a year---and one year it just showed up--and that was or took 30 years--from the date of his RP surgery. So my premise which I will be posting on, later as I am putting research notes together; is that the cancer was always there, but not actively trying to divide and multiply, and try to kill the host. Then one day something caused these cells to activate. How do we stop this?

Nalakrats

I am giving info on my husband.

1. Initial psa 4.4. Gleason 7 (3+4). Pathology stage T2b (confined to prostate involving both lobes.

2. Treatment: RP

3. psa dropped to .01 immediately after surgery.

4. 5 years of .01. Year 6: .03.

5. Year 7 official biochemical failure: psa .3. Year 9, (psa 1.4)salvage radiation to prostate bed. Psa down to .1

6. 2 years consistently rose to 1.4 again

7. PSMA scan showed 1 lymph node involvement. Lymph node surgery missed involved lymph node, according to 2nd PSMA scan. Currently seeking info on how to proceed.

Hey Nalakrats,

1. Dx 2006, age 48 years PSA 5.1 Gleeson 7 (4+3) Stage 2b.

2. Initial Treatment- EBRT 38 sessions. ( 2 Drs both said that i had a 79% chance of "cure",

compared to 64% chance of "cure" with RP ,according to their statistics! )

3. As per usual with EBRT, PSA never went undetectable. Reached nadir of 0.50, 2.5 years

post treatment.

4. PSA remained around 1.0 for about 3 years, then went to 1.3, then rose to 2.5 in an 8

month period. DRE confirmed re growth of prostate tumour, and MRI showed an en-

larged iliac lymph node and bone scan showed "suspicious" spots in pelvis and ribs.

5. Remission (or was it?) was for about maybe 5 years. Official Dx of biochemical relapse

was about 7 years post treatment. ( I personly believe BCR happened when PSA went

from 0.50 to 1.0, but none of my Drs were concerned.)

6. Current treatment ADT. ( Lucrin 4 monthly since Oct 2015, but with a couple of brief

"vacations'') PSMA scan ( Nov 2017,) showed only one small rib met, but iliac node at

the time was quite large and 3 other nodes in pelvis lit up.

Hope this helps mate,

Cheers,

Mark

deano58
deano58 in reply to deano58

I probably should ad that when my PSA went from 0.50 to 1.0,

my Dr said that because i still had a prostate, normal prostate tissue would start

"recovering" from the radiation treatment, and so would keep producing PSA.

He was obviously wrong.

Nalakrats
Nalakrats in reply to deano58

One of the arguments, about choice of initial--treatment--I had the same choice--but went the surgery route.

Nalakrats

Nalakrats
Nalakrats in reply to deano58

You never really reached a level of PSA determined to be Undetectable. So yes your initial Treatment did not quite work. Can't look back--but I appreciate your input--as there is a trend among men who reach long term remissions, and who do not die of something else, that eventually have a bio-chemical failure. To this I am doing some research. I cannot use your statistics, as you never got to undetectability/remission as to PSA, which would have been <0.1

for 5 years.

Thanks for responding--and Prayers for your continued treatment.

Nalakrats

Thanks Nalakrats

There has been some discussion regarding men who underwent radiation and had a BCR sometime down the track, that because the prostate is not removed, and some PSA is still produced by non-cancerous tissue, albeit very unhealthy and fibrous type tissue, a PSA that goes below 1.0 is considered remission. So after EBRT, PSA NEVER goes anywhere near undetectable.

I think I read somewhere that statistically more men have BCR with radiation than RP.

There is a large group that you might be missing if only looking for men failed RP or RP with radiation. Just my thoughts.

All the best,

Cheers

Nalakrats
Nalakrats in reply to deano58

Actually undetectable, is less than 0.1--not less than 1. Hopefully not missing, as I asked what the initial treatment was---free to tell---and really trying to see if everyone either fails, by having a BCF--after 5 years or those that are still in remission after 5 years, and if they are vacationing, or taking drugs to maintain that remission.

I am also just adding outside data, from this site, to something I have almost fully concluded. I will express my conclusions, at a later time. I am at war with my Dormant Pca cells--the ones that my PSA tests say I do not have--which is bull.

Nalakrats

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