New Member - Hoping to be able to contribute to the rich knowledge base here!

[cujoe]

As a follower and benefactor of the many knowledgeable posters here, I am now joining the community to share my experience with PC (& an indolent blood cancer, CLL). I was diagnosed with CLL 12 years ago. I have never needed treatment and am very stable Phase One at this time.

I had robotic NSRP in August 2013. Final biopsy staging was Gleason 4+3, 30% cancerous, non-confined, extracapsular involvement, rt seminal vesicle invasion and a staging of pT3a/3b pNx. Since my CLL likely caused some lymph nodes to light-up on pre-surgery scan, 5 lymph nodes (4 on right side + 1 on left) were biopsied at start of RP procedure. All were positive for CLL, but negative for PC. My surgeon obviously did a respectable job as my PSA fell to "undetectable <0.1" within 30 days post-surgery. Shortly after surgery, I happened upon the following document from the American Urological Association:

Adjuvant and Salvage Radiotherapy after Prostatectomy: ASTRO/AUA Guideline, published in 2013. While it is based on data from 1990 to 2012, I still highly recommend this document for all those who have had surgery, as it covers the risks for each of the four biopsy negatives. (It shows, for example, that seminal vesicle involvement is a more negative factor for biochemical recurrence than for cancer that has spread to sentinal lymph nodes.)The 85 page document can be found here:

auanet.org/guidelines/prost...

With a pathology showing 3 out of 4 negatives (all but LNI), I chose to do adjuvant radiation as soon as possible after the surgery. That entailed 8 weeks of IMRT radiation in the Spring of 2014. (34 treatments = 63 Gy total) My PSA remained undetectable until March 2016. (about 30 months after surgery and 24 months after IMRT - so its not clear that I got a "major" benefit for the radiation.)

When my PSA began its rise in March 2016, it did so with a vengeance - with a doubling rate of about 45 days! From the time I got my first lab +0.2 until I stated ADT 6 months later it had rapidly risen to 25+. During that time my cancer center got me into the Stratus clinical trial. This was trial that tested about 120 gentic defects to match patients with targeted drug trials. Considering a family history where both parents and each of my 4 siblings has either died from or been treated for cancer, I was surprised, to say the least, that I was negative for all 120 defects. (The testing used tissue from my final biopsy, so I guess there is always the possibility that there could be some genetic evolution since then??)

In July of 2017 I began three months of Lupron (w/ bicaludamide for PSA flash). Labs at the end of three month treatment period showed PSA to be <0.1 and T @ 9. (The very low T explained why I was having most of the regular ADT side effects.) At three months out post-treatment, my PSA remained <0.1 and my T was up to 500+!. (Going into that appointment, I was pretty sure my T was back up as the ADT side effects were waning and my energy level was back up to normal.) My oncologist was baffled by the labs and we decided to see what happened after another 3 months. Once again labs showed a <0.1 PSA and T in the normal range. I have now been 9 months post-ADT with the same results. I have extended my routine visit interval to 4 months and if December provides the same result, I will have made it one year with normal levels of T and "undetectable" PSA. It is worth noting that one member of the review team has suggested starting an aggressive chemo regime to hit the cancer hard while it was weak. However, being from a “cancer family” and having lots of up-close personal experience with individuals undergoing various chemotherapies, I chose not to pursue that treatment avenue at this time. (I do realize that there is growing evidence of the efficacy of that approach - and any APC community input about this would be appreciated.)

Of somewhat special note to this community is that I have the AUS800 artificial urinary sphincter implant. My incontinence never improved much after 3 months post-surgery. So just about the time of my biochemical recurrence, I was evaluated for the AUS800. Since I had already done PT with no discernible improvement, I had surgery to implant the AUS800 in June 2016. And while the surgery was actually quite bit worse than the robotic RP, it has provided an unqualified QOL improvement. I am now 95+% continent - after going through 3-5 thick pads daily before the implant and having the "dark cloud of leakage" a constant worry throughout the day. I now have the advantage of being able to "pee at the press of a button" and while I sometimes wear a thin pad for security, I no longer need to monitor my urinary function. I will be glad to detail my experience and provide information to anyone here who might want to consider this somewhat radical "gold Standard" procedure for severe incontinence.

While I have been on a 95% vegan diet for about 7 years and differing regimes of supplements and plant powders since my CLL diagnosis 12 years ago, I began a mostly new "personal clinical trial" when I started my ADT treatment last year. Some of what I included came from your highly-touted gator-blood enthusiast best known as Nalakrats. Hats off to him (Welcome Back) and thanks to the many other regular contributors for the thoughtful and well-researched information they tirelessly provide to the group. I will detail what my experience has been with modifications to my diet/lifestyle and reasons for specific supplementations as time goes along.

Most importantly, I have gained a lot of insight and knowledge from posts read here over the last several years. I can only hope that by joining and now trying to contribute on a somewhat regular basis, I may be able to repay some of the debt I owe to many of you reading this now.

Be Well,

Best Regards,

Cujo

[Tall_Allen]

So if i understand what you wrote, you are on an intermittent ADT regimen, with only 3 months on?

[cujoe in reply to Tall_Allen]

IADT was the initial treatment plan; i.e., 3 on/3off. But the expectation was that after 3 months off, my T would rise and PSA would rise along with it. it was unanticipated by me or my oncologist that once my T rose back into the normal range, that my PSA would remain (my cancer center's) undetectable <0.1. Therfore, with my approval, we are extending the "off" period indefinitely. Nice to be free of ADT side effects for the last 10 months.

[cujoe in reply to cujoe]

I forgot to mention that my current age is 71 and that during the 6 months from time of biochemical recurrence to intitation of ADT I had two sets of bone/CT scans with no indications of cancer.

I would also be interested to find if any other PC posters here also have CLL. Both CLL and PC are common diseases of aging males and neither of the cancer centers I see for them individually have provided any information on the possible negative dynamic between them. At a minimum, since CLL is essentially a disease of the immune system, it seems apparent that it can't be very positive for prostate cancer progression.

[Schwah in reply to cujoe]

One thought on your post Cujoe. Prostate cancer chemo is not that bad. Really. My wife’s chemo for her breast cancer was a lot worse with many more chemicals. For me flu like symptoms day 3-5 but not horrible. I golfed and worked out the whole time. Great tips here to minimize the side affects. You can even keep your hair if you are willing to spend a few bucks on this new head freeze program. So please don’t let your fears of chemo allow you to make poor decisions.

Schwah

[cujoe in reply to Schwah]

Schwah,

Thanks for you comment.

I have been bedside and watched four members of my family die from cancer. That includes both parents (dad from prostate cancer & mom from cancer of the bile duct), my older brother (8 years ago from metastatic pancreatic cancer) and, most recently, my oldest sister (last year from metastatic breast cancer.) My sister, while beating the odds by a long shot, went through 12 years of on/off chemo treatments with a ever diminishing QOL. My brother went through the normal chemo protocols for pancreatic cancer, a disease you would wish on your worst enemy. I took care of my Mom during her last six months of life. It was the most useful and rewarding thing I have ever done in my life. At 84 years old, she was not offered any interventional treatments and had a very good QOL up until her kidneys started failing about a month before her death. I also spent lots of time with both my brother and sister during their treatments, so I've been to the infusion labs, I've watched the gradual loss of vitality that the best drugs extract as they promise (at least at the end) of extending the debilitated lives of the patient, and I've held the hands of family members as they took their last breaths.

My sister also had the insult-to-injury atypical-bone-fracture to her femur that is now recognized as a common problem with long-term use of bisphosphonate drugs commonly prescribed for BC patients. That her oncologist never suggested a drug vacation or advised her of the "black box" labeling that the FDA had required during her use, serves as a warning to all of us that we should research any and all drugs that we take and stay abreast of any changes that take place over time. Just this year the long-term effects on ADT are showing issues related to cardiac health and dementia risk. Most recently, there is evidence that it can actually make the cancer more aggressive.

sciencedaily.com/releases/2...

Caveat emptor to say the least.

Taking all that into account, I think you can now see why I am not a proponent of "over treatment". In fact, when my oncologist mentioned that one of my review team had suggested the hit-hard-with-chemo-now approach, I told him that I was aware of recent positive evidence, but not interested in discussing it at this time.

So, I guess I am somewhat throwing the gauntlet to the community to provide some evidence that the benefits of early chemo outweighs the short and potential long term side effect. (Which may yet be unknown.) In the end it all comes down to what sort of short-term risks one is willing to take for unknown longer-term (potential) benefits. The reality is that none of us are going to get out of here alive; i.e., "Life is a disease; We all have it at birth; There is no cure; We all will eventually die from it". So at some point (I have lived with a very decent QOL for 71 years now), you may have to make a decision of "quality over quantity". That is somewhat the struggle I now have before me. Were I much younger man, the stakes would be much higher and my struggle much more difficult. I am currently enjoying my hormone-rich maleness, so it MAY take something (like a rising PSA) to get me back to ANY type of treatment.

Be Well - cujoe

[mcp1941 in reply to cujoe]

I was diagnosed almost 22 years ago with PCa and 15 years ago with CLL. Like you my CLL is dormant and never needed treatment.

[cujoe in reply to mcp1941]

mcp,

Glad to know you are doing well on both accounts. I have been a bit confounded by the lack of information about the dynamics (if any) between the two cancers. I come from a family where you can expect to get cancer (going back to both parents and two older siblings - out of 5 total), and to eventually die from it. Unfortunately, at least in the case of PC, the cancer is showing up much earlier in the next generation. I have two nephews (via 2 different sisters) who have had prostatectomies at age 45. (Mine was at age 66.) In my case, if I had gotten to a cancer center and surgery a year earlier, my cancer would have probably remained organ-confined. Active surveillance was the order of the day and I later realized I should have been advised to considered treatment after my first biopsy at age 63.

My CLL profile is very favorable and, except for the many enlarged lymph nodes I had at diagnosis, I have never had awareness that I had the condition. During the first 4 years after diagnosis, my WBC was doubling every 18 months. It eventually reached 3 X upper normal range. About a year earlier, I started to alter my diet to one as close to vegan as I could. I would say I was 80% first year and now 7 years later am consistently 95%+.

One year after the radical shift in diet, my WBC peaked and over the next three to four years came down and is now consistently about 10-20% above the upper normal range. My absolute lymphocyte count has also dropped from upper teens at diagnosis to 7.1 at last labs. Platelets still remain somewhat low, but with all the blood-thinning supplements I take, I have come to expect that. I also have the double 13q deletions and am IgVH mutated. Additionally, all my large palpable nodes have dissipated. At this point, I only have one node I can feel that is larger than BB-sized.

While I have no real proof that the improvement in my blood chemistry was related to my dietary changes, it is a very compelling coincidence. However, I also made very specific changes to diet and supplements (I take a lot) as my PSA began to rise above 4 in 2008. I never saw any evidence at all that those changes had any effect on the PC progression. That said, I do believe that the newer (and more rigorously researched) diet/lifestyle and supplement/plant powder regime I started when I began my first (and so far only) ADT treatment is a contributing factor in my short-term PC "semi-remission". Since my post-surgery/IMRT rise in PSA was so aggressive, I was dubious that I would respond as well as I did to ADT. The surprising negative results of the Strata gene tests (esp. considering my familial cancer history), did provide some hope , since I am least not loaded up with many of the major cancer-related gene defects, such as BRCA1/2, PTEN, NOTCH, KRAS/HRAS/NRAS,TP53,etc.

Assuming that I get another normal T w/ PSA <0.1 at my next appointment in late December, my dilemma will be whether I then reconsider the "hit it hard while weak" chemo or I stay the course with no treatment for the immediate future. I'll be looking for some feedback here as to what the most likely/best chemo combo would be and what the likely side effects would be. Drug costs will also be a factor, as I am not prepared to bankrupt myself to extend a lifetime of poverty at the hands of greedy pharmaceutical companies. (I have already apprised my cancer center that for any treatments not covered by Medicare + "place-holder" drug plan, I will need major assistance or it will be a "no go" situation.)

MCP, I would be interested in hearing about your experience with your duplex cancers. If you don’t think it appropriate to post here on the PC site, please feel free to send me an email.

Thanks for your initial response and Best Wishes for Continued Good Health ToYou,

Best Regards - Cujo

[mcp1941 in reply to cujoe]

PCa history;

11/1995 Routine blood work PSA: 95

01/1996 Gleason 7 4+3 Start Lupron

02/1996 Added Casodex

04 &05/1996 Five an half weeks EBRT

09/1996 Seed - Stop all hormone therapy.

10/1996 Thru 03/2010 PSA very low at times undetectable then four consecutive increases.

06/2012 Start Avodart

12/2012 Stop Avodart

02/2013 4 LN Clusters positive for PCa

05/2013 Start Casodex and Trelstar

05, 06 ,07/2013 8 weeks ERBT for LN's

08/2013 Switch from Trelstar to Lupron

09/2013 Stop Lupron Start Zytiga and Pred.

06/2014 PSA undetectable Stop Zytiga

10/2014 Canceled scheduled Lupron shot

05/2015 PSA undetectable till now. Started rising slowly.

06/2017 Start Eligard

06/2018 Start Erleada

09/2018 PSA: 0.7 Hoping PSA will be undetectable on next blood work.

I had many tests between recurrence and now. If you want info on them just let me know.

My PCP detected signs of CLL during routine blood work. He sent me to a blood specialist that took a ton of blood tests which confirmed CLL. HE said that I should thank my PCP for picking up on this so early. This all took place about 15 years ago. I don't know why I haven't kept copies of the workup and results when I do that with PCa. I am still seeing the original PCP so he is on top of keeping an eye on blood work.

[mcp1941 in reply to cujoe]

Error: 09/2013 Should read: Stop Casodex and start Zytiga and Pred.

[cujoe in reply to mcp1941]

mcp1941,

Wow! Thanks for the detailed treatment history. At 22 years and still going strong, I'm sure a lot of people here would hope for such an outcome. Looks like your treatment team has gotten you to the right treatments at the right time.

Maybe the PC treatments have helped with the CLL? Good Luck with your next labs. Keep me updated.

[pakb]

Looking forward to your knowledge- sounds like you've had a crazy ride!

[Magnus1964]

That is what makes this website great. You never know what little tidbit of information can be useful to some one else here. Thanks for your willingness to share.

[Hidden]

Glad to hear of your progress. How was your blood cancer CLL diagnosed? What are the symptoms? Is this something that shows up in the typical annual physical lab work?

[cujoe in reply to Hidden]

WSO,

For the majority of symptom-less people, it is usually picked up in complete blood count lab results. The most common characteristics being an elevated white count, often coupled with a low platelet count and/or an elevated absolute lymphocyte count. (The last only comes when the CBC is "with differentials") My platelets stayed with in the normal range for about 4 years after diagnosis.

Timewise, this happened in 2006. I was not getting annual physicals at the time, but at my last earlier physical in 2003, all blood work was normal. At the time of the biopsy in 2006, all blood work was normal except white count. (As this was before electronic records, and even though I asked for copies of all labs, I didn't start getting results for differentials until 4 years later. By that time the ALC was a bit less than 5 x upper limit for normal. Now down to < 2x.)

I am fortunate to have the indolent form and, as I said earlier, would not even know I have it, if I wasn't making semi-annual visits to my cancer center.

If you want to know more, here is a good place to start

cancer.gov/types/leukemia/p...

[JimVanHorn]

Well, I was on Lupron injections for 6 and 1/2 years and now I am cancer free, but on watchful surveillance. Best of luck.

[cujoe in reply to JimVanHorn]

I want to be like Jim!

[j-o-h-n]

"Cujo is a frightening, but uneven horror tale of a rabid St. Bernard dog who terrorizes a woman and her son who are trapped in a stalled car".

Now tell me cujoE, do you belong to the AKC? If so, keep on biting those tiny bastards.

Good Luck and Good Health.

j-o-h-n Monday 10/08/2018 7:08 PM EDT

[cujoe in reply to j-o-h-n]

Not a member of AKC, but I once had a cocker spaniel name Mr. Nosey Boots who was blind in one eye and got along as if he had sight in both eyes. He still serves as a personal role model for how to deal with misfortune. In my next life I plan to return as Golden Lab and chase sticks to my heart's content; i.e., No terrorizing of women and/or children.

I got the CujoE nickname (the E was because the shorter version was already taken here) many years ago from a very good friend and coworker. And, Yes, its origins are from the writings of a man named King. And while I can't bite those tiny bastards, I am working on them in any other way I can devise.

[j-o-h-n in reply to cujoe]

Reply to cujoe:

If Nosey Boots was blind in both eyes does that mean you would have been his "seeing eye man"? Golden labs are great dogs I had one once his name was 14K. I wish I could come back as a any breed or a mix named D-o-gie cause they're able to lick their own...... (never mind, you get my drift).

Hopefully you'll kick those tiny bastards to the side of the curb and live a very long and happy life.

Good Luck and Good Health.

j-o-h-n Tuesday 10/09/2018 5:18 PM EDT

[cujoe in reply to j-o-h-n]

It's MISTER Nosey Boots to you! He did better with one eye than I've ever been able to do with two, but a seeing eye man I would have gladly been for sure. As for your 14K, that is a pretty bright name for a Golden.

I'm working to make/keep my life happy no matter how long it turns out to be. Good Luck and Health back at ya'. cujoe the canine terror

[j-o-h-n in reply to cujoe]

To: cujoe the canine terror,

oops... sorry.... "Mister".....

May you live to be 15 years old in LARGE dog years....

Good Luck and Good Health.

j-o-h-n Wednesday 10/10/2018 12:38 PM EDT

[cujoe in reply to j-o-h-n]

j - o - h - n,

Your lighthearted touch is a greatly appreciated - and often needed here.

May you live many blissful years as your reward! (The source of your bliss should be of your own choosing!) So says Cujoe the canine terror.

[j-o-h-n in reply to cujoe]

Cujoe the canine terror:

Thank you... My hobby is humor.... it used to be sex....

I was asked what's better than four roses on my piano? I said, tulips on my organ....

May your days be full of humor....

Good Luck and Good Health.

j-o-h-n Wednesday 10/10/2018 9:25 PM EDT

[JimVanHorn]

Well, I will wait and see what happens next. I am on Medicare (73 yrs old) and I only paid my Co-pay each time I got a Lupron (Eligard generic) shot. I also received funding from the Patient Advocate Foundation Co-pay Relief Program (CPR). I am on Coumadin and Plavix (both blood thinners) for my heart and I have kidney stage 4 failure. My hemoglobin is 10.1 and I am diabetic on 5 shots of insulin daily. I am alive and kicking and look forward to every day. I am confused about your Leukemia. So just keep truckin'.

[JimVanHorn in reply to JimVanHorn]

So I just read about Leukemia and I can see why you are tired of dealing with disease and want the best therapy. PCa does grow slowly. I had 72 radiations in the last 11 years. We all have different kinds of cancers and in different places, so what works for one person my not work for all of us. I trust my oncologist and he has helped my greatly.

[cujoe in reply to JimVanHorn]

Jim - While it sucks to have two cancers, CLL, is often referred to a the "Good Cancer"?? Like there is such a thing. That said, other than the initial scare of a C-word diagnosis and the white count doubling rate during the first couple of years, the physical impacts have so far been virtually undetectable. Nothing compared to the multimodal nature of your current health issues. When we get diagnosed with any serious medical condition it tends to very quickly make us aware of how precious every day really is. As the sayings goes, "Every day you wake up is (hopefully) a good day".

I was wondering what caused you to stop ADT when you did? And also what your T levels have been since stopping.

I'm also guessing you are aware of the foods, supplements and other non-pharmaceutical means to help counteract some of your other medical conditions; i.e., berberine as a natural alternative to metformin; garlic/turmeric/ginger/cinnamon/cayeene pepper as natural blood thinners (definitely NOT to be taken along with Coumadin/Plavix w/out Dr. approval); and changes in diet to help prevent kidney failure (See below):

nutritionfacts.org/video/pr...

nutritionfacts.org/video/tr...

nutritionfacts.org/video/pr...

nhs.uk/news/medication/baki...

sciencedaily.com/releases/2...

Obviously, none of these should be undertaken without the approval of your doctor(s). The interaction between your conditions is no doubt complex. Changes that benefit one might well have unintended negative consequences for another.

I’ve been trying to get a local acquaintance to modify his diet and lifestyle to improve his medical status. He is type 2 diabetic with late stage CKD and has been told by VA Hospital doctors that he will be on dialysis in a year or so. He works tirelessly in the gym, but is still overweight and seems unwilling to alter his diet as the above links suggest he should. Time will tell whether he wins or loses – and ends up on 3 x per week dialysis.

Hope this helps you keep on truckin’. Keep me/us posted &Be/Stay Well - cujoe

[JimVanHorn]

Well every 7 years the cells in your body die off and are replaced by basil cells that take it's place. SO i was without testosterone for 6 and 1/2 years, my prostate cells could not multiply, and when the cancer cell dies a new healthy prostate cell replaces it. That is why I stopped ADT therapy. My diet includes foods that are compatible with diabetes, Coumadin, kidney disease, and heart disease. Thanks for caring.