What to do when in remission? - Advanced Prostate...

Advanced Prostate Cancer

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What to do when in remission?

lewicki profile image
57 Replies

PSA now at >0.1 and T > 10 after seven months after four trips to University of Heidelberg and no ADT besides Dutasteride and Finasteride what can be done to keep the demon from awakening? Provenge, Bicalutemide, and supplements. Supplements are hard to choose since there are so many and costly.

Is there such a thing as top of the list for supplements.

For T to stay low is a disappointment and a blessing. I think.

Urologist and ONC suggests going off Dutasteride and Finasteride.

Will discuss doing so next visits.

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lewicki profile image
lewicki
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57 Replies
depotdoug profile image
depotdoug

So “PSA now at >0.1 and T > 10 ”.I am confused. PSA rising after Lut—177 at Heidelberg University.

lewicki profile image
lewicki in reply todepotdoug

PSA not rising. Trying to decide on what I can do to possible to keep the demon in chains.

I would drink wine, smoke pot and dance to 60's music.

lewicki profile image
lewicki in reply to

50's R&Blues and a cigar and a dry Martini. Will this work?

in reply tolewicki

Some Muddy Waters, a Warzone Robusto and an olive in that martini will work just as well.

lewicki profile image
lewicki in reply to

Ah yes good choices. Looking at a Rocky Patel Edge or a Connecticut. Muddy waters sounds good.

in reply tolewicki

Oh yah!

in reply to

Hey , I do that each day!✌️😎

mrscruffy profile image
mrscruffy in reply to

I would listen to Electronic Dance Music surrounded by women in their mid thirties while sipping some Gentleman Jack

lewicki profile image
lewicki in reply tomrscruffy

Yahoo!

Magnus1964 profile image
Magnus1964

Why go off the ADT drugs if they are working?

lewicki profile image
lewicki in reply toMagnus1964

As far as ADT I am seeking a vacation. Perhaps a bad idea. Onco says at age 8o off ADT and enjoy the next 10 years. I really need a new one. Urologist even suggested no dutasteride and no finasteride. I still have the gland and only other treatment to it was transurethral hyperthermia in Germany. Gland is very small and no lumps.

Magnus1964 profile image
Magnus1964 in reply tolewicki

It sounds like you are on top of this.

lewicki profile image
lewicki in reply toMagnus1964

I hope so.

GP24 profile image
GP24

I would just take 150 mg of Bicalutamide plus Tamoxifen and observe the PSA value. My doctors told me to stop ADT as well and it did not take long and I got a recurrence.

in reply toGP24

I agree. Many fear adt . But An agessive APC scares me more .

GP24 profile image
GP24 in reply to

I would consider Bicalutamide as ADT "light". It has far less side effects than Lupron. Main side effect is breast enlargement and this can be avoided with Tamoxifen.

in reply toGP24

Why the fear then ?

lewicki profile image
lewicki in reply toGP24

That does worry me.

GP24 profile image
GP24 in reply tolewicki

If you take Bicalutamide, the time to recurrence will be significantly extended. I would estimate the time will be doubled. A nuclear doctor told me, the patients recur in about a year's time or earlier.

I’ve been in remission five years . Still taking adt plus I did the orch .

ctflatlander profile image
ctflatlander

Jump up and down, shout for joy, but don't hurt yourself. Celebrate, get high on booze or whatever with friends. I would die for undetectable.

EdBar profile image
EdBar

I was in remission if you want to call it that, (I always called it dormancy, some call it senescence) for about 6 years but never strayed from taking my usual regimen of ADT drugs. In year four of remission I stopped taking Xtandi per my MO due to SE’s and PSA became detectable again so back on it I went at a reduced dose and back to undetectable until recently at the 7 year mark. My docs always gave me the choice of going off ADT for a while but at the same time they said if it were them and it’s working they wouldn’t mess with it. So I stayed on ADT. Your docs may be thinking at your age you’d enjoy a break. If I was 80 I might consider it but I’m much younger. If you decide to go off ADT entirely just have a plan on what your gonna do at what PSA level if it starts to rise. You may also just want to just stay on dutasteride, since the SE’s are very minimal. Good luck and congrats.

Ed

lewicki profile image
lewicki in reply toEdBar

Thanks Ed

leo2634 profile image
leo2634

66 years old on ADT 4 years no break,PSA 0.1 since first month treatment. Provenge was added two years ago.

EdBar profile image
EdBar in reply toleo2634

Did you have any issues qualifying for Provenge with a low PSA? I’m considering getting it this summer.

Ed

leo2634 profile image
leo2634 in reply toEdBar

No not at all my Doctor said that's when its best for men in our condition. It was totally covered by Medicare and I had very little side effects. Make sure you go to the bathroom before the lukipricia don't think I spelled that rite which is the first part. Leo

dfridge profile image
dfridge

Not to be a downer, but I've had 2 ADT holidays...with PSA undetectable one lasting 9 months, the other 11 months. Once the T started rising, so did the PSA. I did everything I could to keep it from coming back (COC Protocol, 2 months high dose Vit C IV therapy, a host of supplements, plant based diet, exercise, daily celery juice and broccoli sprouts, acupuncture, etc) both times it's slowly cone back. I am currently just on ADT and PSA has dropped to .07 after the 3rd Lupron shot. I will most likely continue my same pattern which is 1 year on ADT, 1 year off. On the off year, I detox as much as possible as I think getting the hormones out of my system is paramount to me staying castrate sensitive. Hope you stay undetectable!

MarkBC profile image
MarkBC in reply todfridge

How long have you been dealing with your cancer?

dfridge profile image
dfridge in reply toMarkBC

Diagnosed Jan 2016. I was 46. Stage 4 Gleason 8-9. Restaged to Gleason 7. Not sure why... but wasn't complaining. Prostate removed (divinchy) then did lymph remove surgery 6 months later. Germany for a 1 month of treatment and then came home and did chemo, ADT and radiation.

MarkBC profile image
MarkBC in reply todfridge

I'm glad to hear you are doing well and staying castrate sensitive. I was 55 and diagnosed stage 4, Gleason 9. I am approaching 3 years, still castrate sensitive and doing well.

dfridge profile image
dfridge in reply toMarkBC

That's great. Keep enjoying life!

lewicki profile image
lewicki in reply toMarkBC

22 years

lewicki profile image
lewicki in reply todfridge

Thanks

Hotrod65 profile image
Hotrod65

Vitamin D, calcium supplements are all I use and count your blessings!, I'm in complete Durable Clinical Remission for 7 yrs now on Immunotherapy.

Leader4077 profile image
Leader4077 in reply toHotrod65

What immunotherapy are you using?

Hotrod65 profile image
Hotrod65 in reply toLeader4077

Pembrilizimab

Jaguarxj profile image
Jaguarxj in reply toHotrod65

What are you taking for immunotherapy?

Hotrod65 profile image
Hotrod65 in reply toJaguarxj

Pembrilizimab

lewicki profile image
lewicki in reply toHotrod65

That is great.

Mormon1 profile image
Mormon1 in reply toHotrod65

Please read about D3 and need to take K2 with it.

Fiddler2004 profile image
Fiddler2004

DO you have a link to your post regarding killing dormant PCa cells?

NecessarilySo profile image
NecessarilySo

I think you mean "<" instead of ">". Regardless, drink vegetable juice (low sodium) or tomato juice, or gac juice for lycopenes. Or lycopene pills. Watch your PSA like a hawk.

lewicki profile image
lewicki in reply toNecessarilySo

I always get that backwards. ADT fog.

lewicki profile image
lewicki in reply toNecessarilySo

I check it monthly. Thanks

Mormon1 profile image
Mormon1 in reply toNecessarilySo

What kinds of vegetable juice, please?

NecessarilySo profile image
NecessarilySo in reply toMormon1

-I drink V8 low sodium but there are others. A good one is Gac juice. Gac has 100 times the lycopene in tomatoes. Tomato juice is high sodium...bad for hypertension. One type of Gac juice , available on Amazon, (Pharmanex) is blended with pineapple and other juices but I estimate that it has lycopenes equal to that of V8. Lycopenes enter the bloodstream with oil like vitamins. I like to eat a few potato chips with 1/4 ounce four times per day. It enlists or increases T-cells which kill cancer cells and other harmful things like pesticides. It slows aging. I find it causes my prostate cancer pain to go away temporarily , about four to six hours. after consuming. Same with cooked tomato products like juice, sauce, paste, early girl tomatoes grown in my garden. I use v8 juice for spaghetti sauce, mixed with garlic, onion, jalepenos, and ground veggie meat. I avoid red meat. Beyond Meat and Morningstar Farms Grillers Prime patties are my favs. Shrimp coctail sauce, Taco sauce, tomato based barbecue sauce and catsup are good to have on the shelf, I eat catsup daily, mixed with miracle whip for salad dressing or on french fries or fried potatoes.or on Impossible burgers or beyond meat burgers or Grillers Prime. The more the better, to a limit. Also there are lycopene pills. I am testing them. Not conclusive yet but harmless. I put on fried potatoes, in spaghetti sauce. Just open the 50mg pill and sprinkle it with black pepper, tumeric, paprika, etc.

ctflatlander profile image
ctflatlander

I'm at a psa of 1.0 It went down .1 from 6 weeks ago. I was undetectable for 8 mos last year after radiation to the prostate and radiotherapy to the bone. Psa is creeping up ever so slowly but not in a straight line. I'm about your age, had orch last week so I'm done with lupron. My MO has me scheduled for scans in June and if there are any visible mets, he is recommending provenge.

lewicki profile image
lewicki in reply toctflatlander

Good luck with this demon.

j-o-h-n profile image
j-o-h-n

Brush up on your volleyball and join a nudist colony......

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 04/26/2021 8:00 PM DST

lewicki profile image
lewicki in reply toj-o-h-n

sounds like a plan.

MrCatMan profile image
MrCatMan

Read Ezra Pound's Cantos.

lewicki profile image
lewicki in reply toMrCatMan

Will check it out.

Fiddler2004 profile image
Fiddler2004

Thank you! 1

ctflatlander profile image
ctflatlander

Thank you Nal. Hoping for the best.

Some that have a little to a lot of evidence (PubMed and clinicaltrials.gov):

MetforminVitamin D (d hydroxy blood status should be about 30-50 ng/ml)

Red yeast rice (or a statin)

garlic

sulforaphane

lycopene

dutasteride and/or finasteride

celecoxib

valproic acid

Cholestoff (plant sterols and stanols)

potassium bicarbonate, sodium bicarbonate, magnesium carbonate

ursolic acid

berberine

ashwagandha

modified citrus pectin

ginger

pomegranate arils and juice

cranberry juice

orlistat

vitamin k (with the d)

curcumin (with piperine and some fats)

Reishi mushroom

doxycycline

loratadine

nattokinase

cabergoline

sirolimus

lewicki profile image
lewicki in reply to

Very good thanks

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