I had prostate surgery in November of 2018 at MSK. In 2020, I shifted from the MSK undetectable category (<.02) to .04 and then now in 2022, I am at .09. I am 63 years old. Has anyone who has had surgery like me been able to slow down their doubling rate through diet, exercise, and lifestyle?
any success stories slowing down PSA ... - Prostate Cancer N...
any success stories slowing down PSA & biochemical recurrence?
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brilliant17
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I did not have the surgery but I have been around for 30 years since diagnosis. I became a vegetarian soon after diagnosis and have taken many supplements while on ADT drugs, radiation, Xofigo, Provenge, etc.
Did you take Provenge while hormone sensitive Magnus?
Schwah
I went on the Provenge treatment between zytiga and xtandi as I recall. So yes I was hormone sensitive.
I also used Provenge while hormone sensitive because the study showed the lower the PSA at use, the better it worked. Bit I had to pay out of pocket because it wasn’t approved for hormone sensitive patients. Did your insurance pay for it?
Schwah
The Patient Access Network paid for most of my Provenge treatment. I can't say enough about PAN. There were terrific. I am sorry I didn't get the chance to tell you about them.
That’s pretty cool. I didn’t know these organizations paid for non approved uses. I paid a small fortune for mine but no regrets. What year did you do Provenge? Do you think it’s a big reason for your incredible longevity with advanced PC?
Schwah
I think I had Provenge in 2014. I was an approved treatment by then.
Hi Schwah , could you point me to that study?
Here it is.
mdpi.com/2073-4409/9/9/2051...
Very long dry article but here’s the key section:
“Moreover, a subsequent analysis of the IMPACT trial which stratified enrolled patients by PSA levels, suggested that sipuleucel-T could be more effective in patients with low tumor burden [77]. In fact, the difference in OS was only 2.8 months between sipuleucel-T arm and placebo arm in patients in the highest quartile of PSA; conversely, according to this analysis, a survival benefit of 13 months was detected in the lowest quartile of PSA”
I must warn you the expense of doing Provenge out of pocket is tremendous. Definitely not for the feint of heart. But as they say, “Hearst’s don’t have luggage racks”
Schwah
Thank you Schwah! Yeah, I’ve been aware of an all but 6-figure price tag. Hoping to convince the VA to do it for, otw it’s impractical.
Here’s some more ammo
cancerhealth.com/article/pr...
Takeaways: “...those who ever used Provenge had a median overall survival of 35.2 months, compared with 20.7 months for those who never used the vaccine.”
And:
“The three-year survival rate was higher among men who used Provenge as a first therapy (49%) or at any time during treatment (48%), compared with those who used oral medications first (29%) or who received oral therapy at any time but did not use Provenge”
You have gone above and beyond, Schwah. Thank you very kindly, sir!
That’s what this dire is all about. I’ve been helped numerous times by other participants. I’m just paying it forward. Let me know what you are able to do. If you read that other article it shows a lot more evidence of the efficacy for the Provenge than their original study did. Especially for early users. The side affects were minimal both short and long term. I’d fight to get it if you can. Remember castrate resistant is a somewhat subjective term so maybe that’s an angle. At the least I’d use it at the first sign of castrate resistance.
Schwah.
Totally agree on all points. I’m going to argue that, as oncology already tells us, we likely already have a population of CR cells…and combine that with the arguments for efficacy in earlier stages. It has recently become my intention to at least investigate use of Provenge as soon as we suspect I’m CR, so I like your angle here.
May I ask, what side effect did you experience and how does that compare to what you know about general population?
I’m sure my MO will present at least one (frankly reasonable) counter-argument: that using an immunotherapy now may disqualify me for future trials with other immunotherapies, if not other things. I need to look more closely at eligibility criteria for things like BiTE, CAR-T, etc.
I’ll keep you posted on any traction I can get here. Realistically, it’s a long shot. If the VA approves it for me, they know that will open the $$ floodgates for many others.
Only side affects I had was about 36 hours of temperature and flu like system after the third infusion only which was a typical reaction. If and when you are able to take the Provenge, check back with me. There are some other studies that show things you can do along with the Provenge that have strong synergy with Provenge.
Schwah.
I will check back with you, and again I can’t thank you enough.
Just by chance, I stumbled across this in my inbox of newsletters. It is another retrospective study:
urotoday.com/recent-abstrac...
Key takeaway (note, “ARTA” means either ABI or ENZ):
…men who received treatment with both sipuleucel-T and an ARTA (30.4 months), exhibited a longer median survival compared with men who received ARTA without sipuleucel-T (14.3 months). This represents a 28% reduced risk of death with sipuleucel-T based on a multivariate Cox regression modeling analysis. This real-world study of mCRPC treatment indicates that men receiving sipuleucel T and ARTAs can provide improvement in survival, suggesting that leveraging multiple mechanisms of action can be beneficial in treating patients with mCRPC.
Now, I’m not mCRPC yet, but again the argument will be (apparently) better efficacy in earlier stages…
…and by now, with apologies to all and in particular brilliant17 , I believe we’re close to hijacking the thread. I’ll update the forum with a new thread if-when I get some meaningful momentum and/or new information.
I appreciate that though there is always something to learn in this crazy journey.
Thank you Magnus1964. I am certainly eating more vegetables now more than ever. However, I do still eat fish for protein. Do you eat fish? What do you eat for protein?
What were your pathology results?
Here is some information on post surgery results but tell me if there is something I left out:
Notes from my two-month follow-up after my surgery:
RP conducted on 11/13/2018
Past history of Prostatitis
Pre-Surgery PSA 12 ng/ml
Procedure was an RP including Total Pelvic Lymphadenectomy
Pre-RP Gleason 8
Post-RP Gleason 4+3
No extracapsular extension
No seminal vesicle invasion
Any comments will be appreciated in the context of my post on biomedical recurrence management. Thank you in advance.
How much do you exercise and what kind? What are your HDL and LDL numbers, your triglycerides, your resting heart rate? Hemoglobin A1C ?
Over the last 5 months, I have slowed down my exercise routine and in some cases not done much, but now I am back on it. There were family matters, COVID, and a knee injury though I probably could have done a little bit at least. I am going back to my routine prior to 5 months ago. I am a runner (about 3-4 days a week, 15-25 miles, one Half Marathon and about one 5k per year). I'm 63 but noticing I am losing upper body toning and muscle so I am planning on incorporating resistance work into my routine.
My HDL is 65; five months ago was 71
My LDL is *102; five months ago was 103 (*considered outside reference range)
My Triglycerides are 67; five months ago were 90
The approximate resting heart rate was somewhere around 51-52 measured five to seven months ago.
I've never taken a Hemoglobin A1C test but my most recent blood work shows my glucose level at 90 but it was 82 five months ago.
It's been almost 4 years since my RP. I would say that I was not as diligent during my first two years when it came to diet. I did keep up with exercise. I guess getting that undetectable <.02 PSA score gave me a false sense of security. I feel I need to be more disciplined when it comes to my diet and hence my post on this subject. I realize that I might need RT treatments but doing my best at this stage while I can.
Your numbers are good. In my opinion, supplements are less important than diet, and exercise is more important than either. Take anything you believe will help, but be careful and research all the interactions as well as possible.
The most important thing now is for you start the resistance training. You're only 63, but there's no time to waste. You are not on ADT, correct?
Thank you very much. No. I’m not on ADT. I have my follow up next week with my surgeon. I’m curious as to what he will say regarding my uptick pattern.
My surgeon does not like supplements in that in his opinion they could do more harm than good. I know they also make liquid supplements these days. In general, I see a lot of men here taking supplements in pill form.
What kind of benefits have you noticed in your health with resistance training?
Great. Stay off ADT if you can but if it’s necessary do not fear it. Hard work is required to thrive on it though, make no mistake. It robs us of our strength in a way that simple aging cannot match.
Those who are fit and strong can usually handle ADT very well. Those who are not tend to suffer, and if they remain unfit and don’t resistance train on ADT they decline rapidly. The older the patient who doesn’t
lift, the faster and more dramatic the decline- but it’s devastating regardless.
I’ve been resistance training since my mid-twenties, so what it’s done for me has sort of morphed over time.
I started in the early 1980’s, when the fitness boom-and especially weight training- was not yet so popular. When I fell in with some guys after college and we discovered how much better we performed in sports by doing it we were hooked. Faster, stronger, quicker. More endurance, more balance and stability, everything.
Later I became a competitive distance runner and didn’t lift much but eventually I picked it (and the sports) back up again.
By my 40’s I began to experience more fully what I’d heard about: that this is when athletic performance starts really declining and that you have to train much harder just to maintain your prowess-somewhat. By middle age decline continues regardless of one’s efforts, but training well definitely slows it.
At Pca diagnosis I was 63. I’ve not maintained many good habits in my life but being strong and fit is one of them, and I couldn’t be more grateful.
I won’t bore you with what or how much I do, I will only say that when it comes to aging and fighting this disease, strength and fitness (along with better treatments) are more powerful than all other interventions combined. There is so much data on this now, with more coming all the time.
Specifically, resistance training, cardiovascular training, balance and flexibility work mean I can do everything athletically that I could as a younger man, just a bit less well. But only a bit, and some of it is compensated for by experience and the inevitable savvy that experience brings.
My sleep is great, my mood is mostly great and balanced. Also my patience, my focus, my energy, my sex drive, my appearance, my inspiration and of course my health in general. I owe much of it to staying strong without question.
Look at the older folks around us who are obese, unfit, diabetic etc etc. Sometimes not old at all-35,40 even. They are beset by a plethora of ailments, their bodies failing far too soon. They are everywhere now. If they look like they’re physically uncomfortable a lot of the time it’s because they are. So unnecessary. We have a choice. Go get ‘em. Great luck to you!
I forgot to mention that although I have never had a Hemoglobin A1C test, I recently took a Micronutrients Assessment from a company named SpectraCell Labs which looks at any cellular deficiencies. One of the results was that my Glucose-Insulin Interaction is borderline meaning my cells are somewhat challenged in their ability to metabolize Glucose. The doctor that walked me through the report explained that increasing my level of Chromium could help with sugar metabolism. I did some research on this and increasing Chromium through food intake does not appear to be harmful but there is controversy as to taking Chromium supplements and its impact on cancer.
Thanks a million. I just made plans to join a gym. I'm a long distance runner but I've slacked off in the last few months. My plan is to maintain my early morning running routine, have breakfast and pursue my resistance training after my runs. I'm not a gym person but my wife goes to the YMCA and using the gym there and going with her will force some accountability. That's my plan for now.
I had surgery in 4/2018, RT to two PLN in 09/2020 and IMRT(VMAT) to prostate bed, LN and LND in 03/2022. I had chemo from 12/2017 to 03/2018 and ADT from 11/2017 to 05/2019, from 09/2020 to 01/2021 and from 03/2022 until today (Lupron only). My starting PSA in 11/2017 was 2.222, last week I was down to undetectable again. I do it all, running, weight lifting and gym daily, switched to WFPBD diet in 02/2018. I also avoid sugar, oil and alcohol. I am on 18:6 time restricting eating and avoid all stress wherever possible. Supplements: curcuma, pomegranate, melatonin, B12 (keep it at the lower range around 200-300), omega 3 and sometimes zink & iron (depends on result lange of blood tests. Vit D is around 60-70, so in the middle range. I trust, that only the combination of school medicine complimented by the other part of the holistic program kept me not only alive but in good condition - not complaining about usual side effects. Maybe there os something in for you.
Thank you for the feedback Nusch. I really appreciate all your sharing.
I see you had RT to two PLN. Interesting. I had a Total Pelvic Lymphadenectomy at the time of surgery. I read that a plant-based diet excludes fish. What are your main sources of protein without fish in your diet? I'm mostly limiting myself to fish/shellfish for protein these days.
It's interesting that you avoid oils. I have not thought much about that though we do most of our cooking with olive oil. I take it you have been gaining some benefits from avoiding oil. I did read that olive oil is acceptable in WFPB diets, correct?
Thanks
Many thx for your nice words and questions! I’m not a doctor but I follow Dr. Greger, Dr. Fuhrman, Dr. Barnard and others. I avoid all animal food and get my protein mainly from legumes such as beans, chickpeas, lentils as well as soy and tofu. At the same time I limit my daily intake to less than 0.8g/kg body weight. My problem with fish: I spend a lot of my time in Croatia and I see really huge fish farms. Millions of fish live there in rather small cages a life of stress. They also get antibiotics to prevent and treat illness. I don’t want to eat a fish full of antibiotics and stress hormones.
I avoid oil, on occasion I take some organic olive oil from my own garden. I try to stick to whole food - rather than extracts. So yes, I eat olives.
For me lifestyle, exercise and diet are complementary treatments, not alternatives. When you read my bio you find it all, RP, chemo, RT and ADT. I believe in both and that all together keeps me alive.
Everything you say makes a lot of sense, especially following a holistic approach of lifestyle, exercise, and diet. One of my challenges, though a good one, is that I recently retired from my 9-5 corporate career and my life passion continues to be music (musician). I do a lot of recording which takes place in a room usually sitting in front of a computer these days. No longer are the days of just playing live into a 4-track or 8-track :-). I embrace the technology but it's easy to let time get away and before you know it cut into your sleep, eating, or exercise, but have a structure for balancing it all going forward.
Cutting out fish is a challenge for me. However, I'm only now really tracking my intake of things like protein and monitoring more judiciously anti-cancer foods. Your e-mail is a nice wake-up call to start tracking my protein intake, especially given my re-entry in to resistance training.
Do you get your soy through both foods and supplements or mainly food?
Regarding oil, that is nice, that you have access to natural olive oil without the nasty fertilizers, etc. I just started drinking olive oil. I found a brand that has high polyphenols and is certified. Nothing can beat something straight from a garden :-). So olive oil is a new add-on for me.
What do you do for mental escape? Is your resistance training your stress reducer?
Thanks for the communication. I really appreciate it.
Had surgery....needed ADT when recurrence happened in the first year post op.....went to Undetectable with a week of T getting to less than 20 with antagonist ADT.
Everyone is different! There's no reason not to try something and go for it if you feel it may help your situation! There is no wrong decision when you make it and you're comfortable with your decision! Don't let anyone make you feel otherwise!
All I'll say is I had RP in 18' and so far... that along with RT & ADT, subsequent surgery to remove Peritoneal masses and appendix with confirmed PCa masses, then Chemo & ADT since 20' ... have yet to abate my PSA as it's back recently... I've only had short 10-12 month reprieves! Have now used 4+ lines of therapy in as many years...
So diet? Lifestyle? Yeah, definitely! But don't sell short SOC and/or also outside the box thinking! Give it your all, including the kitchen sink! Lol...
Good Luck and Best Regards
Thank you. Keep up the good work. By SOC, do you mean standard of care as in receiving treatment from physicians in a clinical setting? Just want to make sure I'm on the same page.
Yes, Standard of Care!
Yes, diet really help me to lower my PSA. I had my prostatectomy of Feb. 2018. After 1 & half month my PSA was .03 then the succeeding every 6 months .04 , .06, .07 . I was worried then the progression of my PSA . So I started to mixed various vegetables here we have in the Philippines. I used blender and add ginger and banana to improved the taste in the morning. While in the evening, I add onion and onion. After 6 months doing it 2 times a day. from .07 it dived to .02.
Thank you for sharing. Congrats on your progress. Very encouraging.
brilliant--Make sure to respond to Tall Allen's question as he has been incredibly helpful in many instances.
Absolutely. I actually already did earlier today. Thank you for your attention.
According to the analysis below, salvage radiation may not be needed in cases like yours:
europeanurology.com/article...
Hello. Thank you so much for taking the time. I appreciate it highly. I have to admit, though I'm very fluent in the technical aspects but can you clarify for me what this article is saying in more layman terms, that relates to my case? I understand the parts saying that I'm not at a high risk of death based on my PSA and Gleason score, but would be open to getting your interpretation which seems to relate more to salvage treatment. I'm seeing my prostate surgeon next week, so this is timely. Thank you for your time and any feedback you can provide.
I put it in plain English in the second part of this article (No/Delayed SRT):
prostatecancer.news/2021/10...
Thank you for sharing. Hope you are doing great.
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