From PSA 1000+, and screaming with pa... - Advanced Prostate...

Advanced Prostate Cancer

12,242 members14,826 posts

From PSA 1000+, and screaming with pain while urinating to Undetectable!

DarkEnergy
DarkEnergy

Unbelievable, diagnosed with PSA 1000+, metastatic prostate cancer disease, 2 years ago with horrible pain when urinating blood, pelvic scan showed cancer everywhere - to undetectable today, current PSA < 0.02.

Been on Lupron and Zytiga/Prednisone for 2 years, a recent visit at Dana Farber, my doc said - to go on ADT vacation!

I know this is a risky situation, because my testosterone level is <3 ng/dL, so the question, I'm at undetectable because of castrate levels of testosterone, due to result of ADT treatment , so why tempt the devil?

89 Replies

Lucky man....Go for Intermittent ADT....To keep your bones, muscles and spirit strong so you can keep fighting the devil for long time in the future. Remember: Those who run away.. survive to fight another day ! IMO. Off periods are to rejuvenate your broken down body....regain the old power and glory...

And ..so they say. ."No Guts No Glory"

Now ,on a serious note: You seem like an ideal candidate for intermittent...what a lovely PSA Nadir !! Enjoy the dance of PSA. No more dark energy.. its all Light now !

You will never get a consensus from drs on rising testosterone and it’s ability to cause reoccurrence. I’m hoping the ones that say it does not cause reoccurrence are right. I’ve waited a year with mine at a high of 99 sliding back to 69 and am starting T supplement this month. Was told to hold it at 150/200. Don’t think there is any proven science behind it. Good luck.

LearnAll
LearnAll in reply to carlo8686

There is a new theory to explain this testosterone conundrum.... Its known as " Saturation Theory" It states that when testosterone reaches to 300 , all the receptors are already saturated by it...and any further increase in testosterone does not cause any more effect.

carlo8686
carlo8686 in reply to LearnAll

Odd that treatment for PC is reduction in T. Yet T doesn’t cause PC

LearnAll
LearnAll in reply to carlo8686

If high testosterone was the cause...we would be seeing billions of very young men loaded with testosterone walking on Earth with prostate cancer. But its the reverse.. most PCa are in men above age of 50 yrs.

carlo8686
carlo8686 in reply to LearnAll

I hear you but not hearing it from any trial. It says that a selected group of patients with localized cancer are being tested with added Testosterone supplement. No data to make you feel all fussy and safe inside. They do not know. Maybe soon.

Lulu700
Lulu700 in reply to carlo8686

Hope is there . For us all .

dhccpa
dhccpa in reply to LearnAll

You think all these docs we see have prostate cancer within? I wonder if they undergo surgery, chemo, radiation, etc.

Lulu700
Lulu700 in reply to carlo8686

My pc is hereditary. Both My dad and favorite uncle Ed. Another factor for me I feel was that I never really learned to deal with stress in a healthy way . I wonder Carlo, how many with APC were type A guys , always go go go for it . Risk takers , like I was .? I felt like I had high t for most of my 53 yrs prior dx . The last two I think my t was way down , but never had it tested. By the time I saw a uro I couldn’t pee. Macho man. I was given an explanation that APC feeds off of T . That was enough for me to chop off the jewels . Glad I did it. They always got in the way anyway. I hope that today is a good day for you and tomorrow even better . Peace .

carlo8686
carlo8686 in reply to Lulu700

I waited too long myself. Thinking it’s just hard to pee I can live with that. Had to keep working you know.

Lulu700
Lulu700 in reply to carlo8686

That’s the typical male way . I had urgency to pee for a few years before dx. The male ego can push through mucho .

carlo8686
carlo8686 in reply to Lulu700

Thank god for flowmax. 1 quit working a year ago and 2 a day is slowing and will soon need help of some kind. Prostate is getting bigger I assume because of stopping the drugs. Better to pee slow than not at all for sure.

Lulu700
Lulu700 in reply to carlo8686

To pee or not to pee .. no one knows the value of this urology ,until it stops working . Good luck brother .

monte1111
monte1111 in reply to Lulu700

I wasn't much of a risk taker I don't think, but I was always go go go. Now I just have to go.

Lulu700
Lulu700 in reply to monte1111

Hi ho ,hi ho , it’s off to pee I go.. as long as I’m peeing im living .. Seven trips a night and countless during daylight hours . Not peeing was a problem .

monte1111
monte1111 in reply to Lulu700

Orange juice jug is recommended by some.

carlo8686
carlo8686 in reply to Lulu700

I haven’t looked into why I’m having trouble but I think it’s slowing continuously. Prostate is getting bigger. I’m growing up all over again.

ronronHU
ronronHU in reply to carlo8686

Just my two cents worth since that's probably all that it's worth! I am of the understanding that T keeps the prostate healthy; however, if a man does develop PCa and has a radical or radiation and the cancer recurs, T cannot differentiate between healthy cells and malignant ones and continues feeding remaining malignant cells.

My grandfather, father and his two brothers all underwent radicals in their early 60s, experienced recurrence, were put on 'continuous' DES and lived well into their 80s.

Lulu700
Lulu700 in reply to ronronHU

There is a true line of heredity for us both .

ronronHU
ronronHU in reply to Lulu700

Absolutely!

I like that "Saturation Theory" theory since as I've mentioned following my injection I hit 1,600ng/dL and after 2 weeks I've been at 500-600. Should have had my injection YESTERDAY but things got in the way so on Monday/Tuesday I have Blood Work that includes "T" and PSA >>> guess I find out and que sera sera

So are you currently doing a form of BAT?

Do you take the T shot at a specific time in relation to your androgen blocking shot ?

BAT is not my approach. The "T" injections allow me to continue my number 2 Quality of Life requirement which is a desire to maintain a high age related bicycling activity for a 70 year old phart. A typical ride of age numbered miles is my standard outing and more often I continue until 100 miles or more is achieved. While the use of "T" is contrary to the typical 5+5 treatment protocol, my entire treatment plan is outside the box. Having the QOL NUMBER 1 requirement being my wife, the addition of "T" has this *castrated first then treatment protocol* guy continue on with daily life as if nothing too much has changed. I am humbled and embarrassed at how few side effects I've had compared to so many men with a lesser diagnosis and only hope that my doctor might have hit on a "outside the box" protocol that could be helpful for others. Mets have not yet been detected but always being a possibility will not deter me from sticking with the plan. My Dr. is continuing with his efforts to "FIND A WAY" >>>

cancerres.aacrjournals.org/...

I've been saturated since the 1960's. They didn't upload my psa result from Friday, so tomorrow I am going to call them and give them a piece of what's left of my mind.

My advice: take the ADT vacation and enjoy every minute of it. My story started similar to yours, with PSA dropping rapidly from 216 and eventually reaching undetectable. And for such a great response I developed treatment emergent NEPCa that nearly killed me at the end of 2020.

Would less aggressive treatment have been a better choice for me? Nobody can say because they haven't done studies of continuous vs intermittent therapy in the subset of patients who reach undetectable PSA. It's a gamble either way.

DarkEnergy
DarkEnergy in reply to tom67inMA

I hear you, learned something at the onset of my PCa diagnosis, we're all an experiment of one.

The cancer cells are like our fingerprint, our fingers looks and acts the same from each other, but have a distinct signature, so I'll measure the PCa characteristics, but act locally...

tom67inMA
tom67inMA in reply to DarkEnergy

Very true, and there's enough of us here to see that every outcome is possible. Some have taken a vacation and had their cancer go out of control. Others have responded to ADT when it was re-introduced. At least one lucky soul has been off all treatment for years, has normal T, and no signs of active cancer.

What was gl score....and hystoligy of such....has a bearing......mine gl 9 w ductal hystoligy.....no talks of fun in the sun....i.e. adt vac.....bw

GL 8

Lulu700
Lulu700 in reply to DarkEnergy

I was the same . 4+4

Guess I can "RING da BELL" 5+5 coming on 6 years dx

High achiever 👏🏼

Lulu700
Lulu700 in reply to Boywonder56

Hey Boywonder56! My uro told me “I never promised you rainbows and butterflies “! He also said that id be dead by now .. vacations yet to be suggested or favored for me.. six years in this March. no one wants to rock the boat ..

Lulu700 wrote >>> " ...vacations yet to be suggested or favored for me............no one wants to rock the boat ... "

Cruising the Bahamas and Caribbean is a suggested 😎 vacation and on an Oasis Class ship it can still be pretty calm in rough seas.--- OOPS, wrong type of vacation. 😀

Never mind... 🙃

How are you going to handle psychologically? That is the real question and the conundrum you face.Best wishes regardless of the decision you make.

Lulu700
Lulu700 in reply to XPO1

I face it with tumeric Kim chee .

monte1111
monte1111 in reply to Lulu700

XPO1 has a conundrum on and you're eating pickled cabbage. I wonder what j-o-h-n is doing today.

j-o-h-n
j-o-h-n in reply to monte1111

Whacking the bishop.... what else can I do?

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 02/21/2021 9:32 PM EST

monte1111
monte1111 in reply to j-o-h-n

I am sure the bishop is very gratified. Glad I'm a Pescaterian.

j-o-h-n
j-o-h-n in reply to monte1111

I used to be a Pescaterian until I started eating fish......

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 02/21/2021 9:50 PM EST

Lulu700
Lulu700 in reply to monte1111

He gave it to me! 😂✌️

DarkEnergy
DarkEnergy in reply to XPO1

The anxiety from the self-inflected conundrum?

Yes, it's just been the story of my life, always thinking out the box, cavalier attitude towards risks, regardless of outcome.

I'm a software developer, so risks can be undone quickly. But when younger, would ferry private airplanes for a buck, I figured aerodynamics is constant regardless of plane. Oh, but the tail dragger did wised me up!

So, this experience has helped me managed my PCa, PSA 1000+ to PSA <0.02, I stay in the envelope, but ventured out with measured calculations. For example, requesting and getting 6 cycles of Taxotere while PSA < 0.02...

XPO1
XPO1 in reply to DarkEnergy

I was referring to the waiting game between psa test. RIght now you are undetectable but when you stop you probably won't be. So every test you'll be seeing how much of a rise the psa will be. Psychologically that will be tough. IMO. We are very much alike. Im a software developer and cavalier too. My wife always reminds me to tone it down.

I found that once I started lexapro my outlook change dramatically and now I'm more "who gives a shit" than ever. LIFE CAN BE GOOD EVEN WITH PCA.

DarkEnergy
DarkEnergy in reply to XPO1

Well, once DX'ed with PCa, it's the waiting game between tests we live by. So, you're realist, then why wait for progression, not me, I'm in the leading edge on this, after all these years, Oncologist's have no clue! They wait and react, I'm the one that demanded Taxotere, it's my life on the line!

Lulu700
Lulu700 in reply to DarkEnergy

I wish you luck and good health .. you hit it hard .

XPO1
XPO1 in reply to Lulu700

I tried ordering more kimchee today and they are out of stock...I emailed the company and they replied that they are having difficulty sourcing the napa cabbage.....darn

😞 I'm ordering 4 jars of the curry sauerkraut in the meantime. 👍

Lulu700
Lulu700 in reply to XPO1

Dear Brother ,it’s a sign of the times. Supply chains issues. I can say it’s the best that ive ever had . One jar left . Then I’ll be on the curry sauerkraut too if available .. Much Thanks compadre! 😷💪

No one really knows if vacations cause harm or not. The thing to consider is that after 2 years of Lupron+Zytiga, how long will it take for your testosterone to recover? Until it does, you won't feel an improvement in your quality of life. And after it does, I doubt that you'll have much time to enjoy it before your PSA comes roaring back.

dorke
dorke in reply to Tall_Allen

You described very much My story...Been on Lupron and zytiga for two years.

Last lupron shot was in April 2020.

T restored in September 2020 PSA still undetectable . January 2021 PSA 0.38 ,PSMA PET/CT confirmed met in RIB. Was T3 when diagnosed.

So I had about four months with a T level

That made me feel like my old me but it was a short ride and presumably came with a toll.Stiil, I would reccomend doing a break. I was able to add some life to my years...

Karmaji
Karmaji in reply to Tall_Allen

seeking an opnion from TA...About 2 years diagonised Gl 8 psa 30 two tiny spots on pelvis

On ADT since july 2018 and RT 20 sessions plus radiation of pelvis spots..'

Psa less than 0.006 since dec 2018.'.

URO and ONCO want ADT for 3 years..'RO says it us upto me

I have no problem with ADT except loss of Libido at 81..

what do u think ...go for 3 years

or go for intermittent..

Thanks for your opinion

Tall_Allen
Tall_Allen in reply to Karmaji

If you have "no problem with ADT," why are you asking the question?

Karmaji
Karmaji in reply to Tall_Allen

Long term effects on bones, muscles ....may be getting libidoSo you will go for 3 years at least....Thanks for kind attention

Tall_Allen
Tall_Allen in reply to Karmaji

A vacation won't stop effects on bone and muscle. You can try a bone strengthening agent, or discuss using an estrogen patch.

Viva! Dark energy . You’ve done amazingly well so far . After a horrendous Psa. Congrats . I was tied up urologically myself . My Psa was a high of 20 . I don’t know what those high Psa s feel like . I went into a undetectable mode over five years ago . With imrt and double adt . I ve never dreamt of an adt vacation . No one recommends that for me . Plus I chopped the boys off to drop the lupron shots .So Id need to inject.. Living with no t on adt is a bitch . We all know that . But having APC actively chomping us down is worse than no t in my opinion . Live happy brother .

I'm glad for you, I started off with 1386 PSA and for the last 27 months I've endured bone pain. The Chemo and ADT showed good results and my PSA went down to 0.028 for 11 months and I remember even asking about a vacation, my Oncologist said when my PSA starts climbing he is worried it will just runaway and keep climbing, that it just about what's happened, the Zytiga failed after only a few months as with the Radium223 before that.

My PSA was up to 360 last week, when the Radium223 failed it went to 300 and the Zytiga got it back to 88 but we could see within 6 weeks the PSA rising, so I'm back on the Chemo, my Oncologist is optimistic that the Chemo will work, he's not so much about any other treatment options as nothing seems to working for very long. I came off ADT and had orchiectomy, good or bad choice I don't know, my Oncologist thought it a better option and I didn't hesitate. Each PET scan has also shown significant progression, I'm just all out of luck at this moment.

My Chemo was Thursday, within a few hours of was knocked off my feet (unexpected), lot of bone pain but seems like the worst has passed now. I see him 4th March and keeping my fingers crossed for some improvement.

Lulu700
Lulu700 in reply to Zetabow

Hang in there Zetabow.

Cheerr
Cheerr in reply to Zetabow

I really hope chemo works. Goodluck.

taylor123
taylor123 in reply to Zetabow

Is Lu-177 or alike an option ?

Zetabow
Zetabow in reply to taylor123

It's not available where I live and I don't have the funds to pay for this privately. The closest country is Finland.

Lulu700
Lulu700 in reply to Zetabow

Dear Zeta . I spent my ducats in the first round . If any Extracurricular treatments are needed in my future I’ll be at the behest of Medicare. No trips overseas in my cards for any upcoming amazing treatments . Depending on when I have a reoccurrence I probably won’t have much to fight with anyway in round two . Can not we start a go fund me page for you now? I wish I had a way to pay for you .. I for one will give $100 right now and I ll request from our 12000 members support . If you choose?

Realistic
Realistic in reply to Zetabow

God bless and keep fighting, that's what we all have to do. Your all such brave men fighting this horrid cancer, we women are the same with ovarian cancer . But reading these posts givesus all the hope and advice we need. Im sending

my love & hugs to you all keep safe. SheilaFxxx

tom67inMA
tom67inMA in reply to Zetabow

I've learned a new respect for chemo. I'm currently on folfiri which is normally used for colon cancer, but it's doing a nice job of beating back my neuroendocrine cancer and the side effects are tolerable. I've recently heard of maintenance chemo, where chemo is continued indefinitely at a reduced level, and that looks like my future. My genetic testing didn't point me at any immunotherapy or trial drugs, but if I'm reading it correctly my cancer should be very vulnerable to chemo that attacks DNA (amateur geneticist opinion).

If chemo works for you and drives your PSA way down, you might consider asking to stay on it at a reduced dose, or with a longer cycle time. The goal would be to find a balance between quality of life and not allowing the cancer a chance to grow back. My MO and I are quite certain my cancer will come roaring right back if chemo is stopped completely, just like it did last year.

Zetabow
Zetabow in reply to tom67inMA

Thanks for the info, I will bring this up with my Oncologist. Although the thought of continued Chemo isn't appealing at all. When he said we have to go down the Chemo route again I was pretty upset, over Xmas I was really struggling with fatigue and pain, I was very concerned that I wouldn't be able to handle more Chemo in my weakened state. I seem to have found the strength from somewhere, feeling almost back to normal after Thursdays dose of poison, Friday and Sat was very hard though, specially the pain.

tom67inMA
tom67inMA in reply to Zetabow

When I first saw my scan results and realized this chemo was working, I went into a depression for a few days after realizing chemo would continue. It's not a lifestyle I'd recommend, but it should allow me to get to a few things on my bucket list although they'll take a bit longer than originally expected. What were are going through is not easy!

monte1111
monte1111 in reply to Zetabow

Yes, hang in there. Seems like I had heard that 223 doesn't affect psa much. But that may be misinformation that I picked up, ahem, somewhere.

I’ve been on Zytiga and lupron for almost four years now...2.5 years of those at ND since 8/18. Vacation is a personal choice but I started w psa if 498 and cancer all over. My docs and my attitude is that “if it ain’t broke, then don’t fix it”. Mine was super aggressive and since it is so far under control, we aren’t going to voluntarily change anything for now. My sex life is clearly different but I just eat super well and maintain lots of exercise and love life so frickin’ much that I’m happy to stay on this road as long as the view is good. Best wishes for whatever your choice is. ✌️ DougNOLA

Lulu700
Lulu700 in reply to dougnola

You are fantastic ! 👏🏼

Realistic
Realistic in reply to dougnola

Brillint right attitude SheilaF xx

gregg57
gregg57 in reply to dougnola

I'm with you Doug. I've been undetectable for 2 years + now and don't want to "poke the bear". My fear is that the cancer would come back faster than the benefits of higher T. And then maybe it doesn't work when I retry it. I don't see it being worth the risk.

I was told that I had pc in me for many years before I even went to a uro . Twas almost too late for me. I thought that I was my own doctor treating my self for normal male menapause by self injecting HGH . I feel that act and other bad habits might have raged up the APC to a boiling point in my urology. ?? I’m lucky to still be kickin this now rusty can down the road ..🌵

carlo8686
carlo8686 in reply to Lulu700

Keep kickin it. Someday they may figure a way to stop it altogether.

Lulu700
Lulu700 in reply to carlo8686

Thank you Carlo . Good luck as well .

MateoBeach
MateoBeach in reply to Lulu700

Don’t carry any regrets over the past Lulu. The HGH did no harm to you except to your wallet.

Lulu700
Lulu700 in reply to MateoBeach

I was in San Jose del C working out and feeling pretty fine .

Great results with just Lupron + Zytiga + Predisolene.

Hmm, some how as much as I will like to tell you brother to go for the vacation from the meds, I think it’s better to err on the side of safety. Check all numbers carefully and cross reference it with others who had taken a vacation and how they’re doing after their vacation, then make a wise decision.

Take care and do right by yourself and loved ones ❤️

Haniff

DarkEnergy
DarkEnergy in reply to Haniff

I did get 6 cycles of Taxotere while PSA <0.02. The rationale was to sweep further, because circulating cancer cells can be brewing while not producing PSA - especially the aggressive cells.

I’ve faced that same question for a few years now after being dx with multiple mets throughout my skeleton and going to an undetectable status for several years now after radiation, chemo and ADT including Xtandi. For me, having a Gleason score of 9 has lead me to stay the course. Most of my docs gave me the option of going to IADT but at the same time saying if it were them they wouldn’t change what is working.2 years ago my MO Dr. Sartor, advised me to try stopping Xtandi due to some BP issues that I was having that were likely caused by Xtandi after taking it for about 4 years. I was at first thrilled by this so I discontinued using it. It only took 3 months and my PSA became detectable again so back on Xtandi I went and back to undetectable. Obviously I need the full array of ADT drugs I’m taking to remain undetectable. I’ve chosen to keep my foot on its throat for as long as I can.

Ed

So are you not feeling horrible anymore because of the ADT medicine? I think some people are unclear about how you're feeling now, myself included.

When my PSA went up 6-9 months after my first diagnosis, my doc suggested to me to get off of the medicine. I can't explain why because it was technical reasons. Basically he just said sometimes people's PSA go down when they get off of their medicine. It happens to 1 in 5 though.

I happened to be the 1 in 5 category. It was great and it took about a year for it to slowly start creeping back up again. It was nice feeling normal again even though my thyroid was the one producing testosterone, not my nuts. The worst for me was trying to get through the crazies. I never had any physical problems, just psychological.

My Doc is pretty aggressive with treatment and always wants to see a PSA score of 0. If he said take a break from the medicine for a bit, even though I'm doing perfectly file with it, I'll be jumping all over that offer. :)

I'm feeling fine, no symptoms of pain after ADT. but the treatment is life changing to despair.

Yes, I know, we got advanced prostate cancer, this condition is slow to our demise, our Oncologist is just playing by the book, we have to push!

So, taking a break is pushing, or they will just pump ADT into out bodies until it stops working.

Was in same position than you. Now six years down the line. Went on drug holidays three times. Still only on Casodex 100 mg/day and going again on a drug holiday from 1 March. My advice: go on the drug holiday for a month or two because it is good for your body to function normal from time to time.

DarkEnergy
DarkEnergy in reply to Thinus

The problem, our cancer is unique to ourselves, so your cancer is not like mine. I hear you, ADT does degrade the body, but there is a line, cancer will be worst than ADT, like death, so it's a balance of living...

That's true man. It's not an exact science.

I am sorry, the so-called ADT vacation failed me. PSA started to rise and the velocity accelerated rapidly during the ADT vacation that I soon was back on ADT and then faced chemo. False hope for high-Gleason score patients, IMHO.

If you ask my opinion, take two and hit to right......

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 02/21/2021 9:42 PM EST

Two in the pink, one in the stink?

Two who are Green..... one in Between....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 02/24/2021 6:29 PM EST

XPO1
XPO1 in reply to j-o-h-n

Who are you now, Dr. Seuss?

j-o-h-n
j-o-h-n in reply to XPO1

Dr. Zeus.... Green Feta and Gyro........

Thanks for publishing my pic....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 02/24/2021 7:24 PM EST

Anyone have luck with the many muscle building steroids used by bike and other competitive sport cheats...ie...do other steroids escape T binding carcinogen is is. Wouldn’t that be a laugh...a bunch of us PC grads transformed from withered girly boys to swaggering apemen.

You may also like...