Newish member intro

[FSB12]

Hi all. I have been posting a comment here and there but have not yet introduced myself properly.

My husband was diagnosed in 2013 with Gleason 9, PSA 5. He had surgery at Hopkins in January of 2014. Post op stats were reasonably good with the only negative being slight EPE. PSA was < 0.1 but that turned out to mean 0.08. So my husband had adjuvant radiation in the summer of 2014. PSA remained in the 0.02 - 0.05 range till June 2018 when it became 0.1. Now in May it was 0.35. My husband had PSMA pet scan at Hopkins in May which showed nothing. So we are in a wait and see mode. One interesting thing is that the mo is not recommending hormone or any other treatment at this time.

Since diagnosis my husband has been on a fairly strict pesca vegan diet ( he will occasionally eat a piece of Polish sausage at family gatherings). He started this after reading Patrick Walsh’s book where it is recommended for men with prostate cancer to slow progression. My comment to the “cow juice” discussion was about this as was the reference: urology.jhu.edu/newsletter/....

Both my husband and I are statisticians and so fully understand what is “proven” or not with regard to nutrition but one cannot necessarily wait for such proof.

Thank you all very much for this wonderful resource. It is extremely helpful.

All the best.

[GP24]

If a PSMA PET/CT shows no mets, you can just observe without ADT. The NCCN guidelines consider this a valid alternative. "Early ADT is acceptable, but an alternative is close observation until progression of cancer, at which time appropiate therapeutic options may be considered."

When the PSA value reaches 2.0 ng/ml you can make another PSMA PET/CT and you will see what is causing the rise of the PSA value.

[FSB12 in reply to GP24]

Thank you. I did not realize that this was part of the guidelines. ADT was not discussed at any time during my husband’s surgery and radiation. Maybe this is because it was in 2014? Now it seems that most men with Gleason 9 get ADT together with their other treatments.

[Hidden in reply to FSB12]

Adt has been a staple for 40 years .. Lupron the old one is still used at one point by most of us . I used it.. other will answer specifics.... I’m surprised he hasn’t been on it yet . That’s lucky..It can be effective ... but it does diminish us greatly . One price most of us have already been paying .I’ve been on adt over four years . Nobody wants adt ... but it could ,if needed ,extend life ... don’t fear adt ,without it I wouldn’t be here today . For me 8 wks IM RT and adt got me over 4 clears years . That’s a miracle from where I started out with APC . Adt and imrt shrunk the tumors and my prostate down enabling them to remove tubes a foley and stints . That took a year and a half . He wont go there . I’d bet adt is in the cards . If it were I ,I’d use no hesitation in using adt to slow down APC . Follow professional advice . The fact that you are Being proactive and his advocate will give him greater chances of beating pc back to We’re it belongs. In a hole ..

[FSB12 in reply to Hidden]

Thank you. Yes, adt most likely will be in our future. So far I am happy that it was not used yet. The problem with most of the stats is that you cannot really run experiments on each individual to see what works. I saw a recent paper from Hopkins that seemed to show that adt used with surgery or radiation had no effect on overall survival in their samples, but who really knows for their own particular case.

[Hidden in reply to FSB12]

You can info overload pretty easily with all of the different treatments and drugs available ..we don’t want to see ourselves in dismal stats . Why imprint that on our brains ? I look at it as the doctors are practicing medicine and we are the guinea pigs . the stats and any morbidity rates we can do better than that . Adt can be mild for some . I took castration hard . First chemically then surgically . He is lucky not have done it yet . Keep moving forward .. finding reasons to smile each day is important .. take care 🌵

[timotur]

Of concern is the doubling time, here's a good tool to calculate it from MSK...

mskcc.org/nomograms/prostat...

[Tall_Allen]

Your link doesn't work.

[FSB12 in reply to Tall_Allen]

Sorry about that. Hopefully this works: urology.jhu.edu/newsletter/...

[Tall_Allen in reply to FSB12]

That's about racemase - is that what you meant?

[FSB12 in reply to Tall_Allen]

Yes. About halfway in the article it talks about cancer progression and dairy. It seems to be at least part of the motivation for Dr. Walsh’s advice to avoid dairy and red meat after cancer diagnosis. Not that it causes the cancer but that it “feeds” it.

[Hidden in reply to FSB12]

It’s ok to cheat once in awhile ,but in general dairy and animal proteins I avoid under advice from my Nat md . 1/2 of our members do so . The other half not .. Take care. 😎

[Tall_Allen in reply to FSB12]

Even Walsh's latest edition was outdated before it was published. Be careful about interpreting institutional press releases as science.

[FSB12 in reply to Tall_Allen]

On the other hand not eating dairy does no harm. So what? We found Walsh’s book helpful at diagnosis and trust our Hopkins doctors to be up to date.

[Tall_Allen in reply to FSB12]

The doctors may be up-to-date, but the published data on their website isn't. Walsh is a good general resource, although I think that the PCF or NCCN patient guidelines are more useful.

[roslynlady in reply to Tall_Allen]

y husband and I have eliminated cow dairy years before his prostate cancer diagnosis but eat goat cheese. The fat molecule from a cow is 10x harder to digest than the goat fat molecule . This can cause inflammation which is the cause of much chronic disease. Any comments?

[Tall_Allen in reply to roslynlady]

I like chevre. My friend has a large lawn that his goat keeps in check, and he milks his goat. It seems like a lot of work to me. The fat in homogenized milk is more digestible because the globule size is smaller. Pasteurization may prevent infection. My doctor tests me for C-reactive protein (an inflammatory marker) annually.

[Db999 in reply to FSB12]

If I’m reading right that article is 14 years old ? With PC I find it changes so quickly anything over 3 years old has usually been changed .. do u have newer studies ?

[FSB12 in reply to Db999]

Yes you are right. I have not found any new research articles specifically on prostate cancer progression and animal fat intake. Anecdotally, some Gleason 6 patients that we have met seemed to be able to control their PSA with low fat mostly vegan diet. Since my husband had high Gleason we did not think that would happen but still think that it may be of some benefit. Also, it controls his weight which should be a plus.

[Tall_Allen in reply to FSB12]

Many men with Gleason 6 on active surveillance can control progression by doing nothing.

The best data we have so far on diet is the MEAL study. It was a large prospective randomized trial that reported that eating more vegetables and reducing meat intake for 2 years had no effect on progression for men on active surveillance. There may be lots of good reasons to eat more vegetables, but prostate cancer does not appear to be one of them. Maybe it takes longer than 2 years to have any effect, or maybe the results might be different for men with advanced PC - but there is no level 1 evidence of that.

prostatecancerinfolink.net/...

[FSB12 in reply to Tall_Allen]

Thank you, I will look at that.

[Magnus1964]

All of the post surgery PSA are low, less than one. The small movements may be due to inflammation. If his PSA trends goes up in continuing pattern then would be the time for ADT and radiation.

[Hidden]

Hi FSB

Did Hopkins say anything about the psa level being so low it might not show anything or were they pretty sure there was just nothing there? Hoping nothing there.

Thanks

[FSB12 in reply to Hidden]

Not totally sure. This was part of a clinical trial and the enrollment was coming up to capacity. When my husband was accepted into the trial his PSA appeared to be 0.44 and rising so we all thought that it would hit 0.5 when the scan was done. But on the day of scan surprisingly PSA was 0.35. So maybe it was too low for the scan to show anything.

[Hidden]

If you get a chance I’d love to hear what their thoughts were on the psa number. If it was me I would have to know that answer. Top ranked place like Hopkins will have an answer for sure.

[FSB12 in reply to Hidden]

We are trying not to get too excited by this last number. Another PSA test is coming up soon and we will see what happens then. I sure hope that it is not some weird variation.

[j-o-h-n]

Greetings FSB12 - regarding diet, fish, milk and etc... I say "Whatever rocks your socks."

me, Chocolate chip ice cream (two scoops), "tickles my pickle"....

Good Luck, Good Health and Good Humor.

J-o-h-n Monday 07/01/2019 11:25 PM DST