Hello All

[RayF]

Hi folks,

New to the site. and to the club no one wants to belong to.

I was diagnosed with Pc in Nov 2018, the day before Thanksgiving. I had been having trouble with a swollen prostate (require a catheter), so my urologist wanted to see things with a scope, in advance of any possible surgery. He noticed some nodules in my bladder, and scheduled a biopsy. The biopsy came back positive for Pc.

He was very surprised. My PSA in Jan of 2018 was 1.77, low in general and low for my age (64). I was shocked of course, and my family was shocked. I had scans, and I had mets in my pelvis, spine, and right femur. Gleason 9. The highest my PSA got was 2.5. My urologist said he had never seen anything like it.

I was sent to an oncologist, who gave me the choice of Lupron + Zytiga + prednisone, or start with chemo. I opted for the Zytiga, for QOL purposes. Going into this my knowledge of cancer was about 0. My last PSA was .09.

I am very restricted with the treatments my plan will pay for, but have been reading about Lu-177, immunotherapy, etc. Since my options are restricted, I am thinking my oncologist may have a lack of in depth knowledge of Pc, and the newest treatment options.

I've been in touch with Cornell Wiell, they have a ton of trials going on, and I believe they were early with the Lu-177 treatment. They said I could get an appt with one of the oncologists. I am planning to do that. (I do not qualify for any trials, until I am castrate resistant)

I have been a health nut my whole life, and this was a real blow. Currently, I have no pain, I still go to the gym several times a week. I'm thinking being on Lupron and Zytiga, any muscle I lose with be impossible to get back. My strength is actually pretty good, and I try hard to keep it.

I apologize for the novella, I actually just wanted to say hello, and keep up the good fight.

Ray

[tom67inMA]

Hi RayF, you are not alone. My PSA was around 2 in September 2017. 13 months later it was 216 and I had advanced prostate cancer and localized bladder cancer. My urologist said he'd never seen PSA go up that fast. Other than that I'm generally healthy and get a lot of exercise.

My PSA has since plummeted, but I'm still nervous as apparently my cancer was developing with a low PSA. Since you also have bone mets, you probably want to keep an eye on your alkaline phosphatase levels which give a clue as to what the cancer in the bones is doing.

Welcome to the club and good luck with your treatment!

[RayF in reply to tom67inMA]

Thanks for the info Tom.

I have had blood taken for liver values, one was higher than normal, I was told it was consistent with bone cancer.

Everything happened so fast, I'm still getting up to speed.

[NPfisherman]

Welcome Ray...

Indeed, this is the club we all wish we never joined...sounds like you have a plan...you are on zytiga and Lupron and prednisone....the zytiga was a wise choice based on recent trials--I am on it also--helps delay skeletal related events--keep going to the gym....it helps fight the fatigue and keeps the muscle mass... get the second opinion....

There are many knowledgeable posters here.... Nalakrats and pjosea13 cover a number of topics- clinical trials, medications, supplements, etc...I follow them...pjoshea13 has posted several times today--the man is prolific...

You are not alone and no question is foolish....ask, learn, be proactive... good luck

All the best,

Fish

[savingdaddy in reply to NPfisherman]

Hi NPfisherman, this is all new to me and Dad. Didn't find this page until my Dad was told the bad news and recommended by Onc to take Xtandi... I keep seeing this med Zytiga. Do you know if this med would be a back up if the Xtandi doesn't work or if my Dad should switch altogether? Thanks Kimberly

[NPfisherman in reply to savingdaddy]

Call me Fish...I prefer it to what others call me....LOL... I am sure you have seen my other responses to you.... Give the Xtandi some time...Shooter's story is proof it has value....keep Dad walking for exercise... best of luck...

Fish

[savingdaddy in reply to NPfisherman]

Got it! Thanks Fish.

[NPfisherman in reply to savingdaddy]

There are several new drugs coming...the Xtandi is a good choice...I think in 30 days, things will be better.... hang in there, lady...Zytiga can be switched with Xtandi but there is some evidence that cross resistance can occur...resistance to both....breathe...wait..and

Live-Laugh-Love

Fish

[savingdaddy in reply to NPfisherman]

Thank you! I’m going to do just that ! A good reminder

[RayF in reply to NPfisherman]

Thanks for the info Fish. When I first went to the onc, I assumed they would take it from there, I have since learned I have to educate myself and find my own path with others guidance.

[NPfisherman in reply to RayF]

Absolutely 100% correct--you are at war with the beast--it is evil, insidious, and mutates...attacking bone and flesh... The posters I advised above do more than standard of care...I lift weights several times a week, try and exercise almost every day, eat a low carb diet--organic chicken and salmon, take supplements--some here will say that supplements and diet don't matter... I say this is a street fight...

I had oligometastatic disease--one lytic bone lesion--started zytiga/Lupron/prednisone within 2 weeks of axumin scan and stereotactic radiation within 2 months to that lesion...if you have 5 lesions or less, there are stereotactic radiation trials for oligometastatic disease...

cancer.gov/about-cancer/tre...

some will tell you that isn't proven science since there are no phase 3 trial results, but we had a poster in the last 2 days--- TWTJr --who has had radiation done twice to bone mets in his 19 year battle... you will have to find his post....

sciencedaily.com/releases/2...

If your PSA drop stalls, some have found using indomethacin with Zytiga may help...

ncbi.nlm.nih.gov/pubmed/277...

You will find your own plan...I say when a window of opportunity opens to bludgeon the beast--Do it...

All the best,

Fish

[HopingForTheBest1 in reply to RayF]

So true. You are your own best advocate. Knowledge is power. Learn as much as you can, and then some.

[Tall_Allen]

So, as I understand what you're saying, cancer was found growing into your bladder and in your prostate, of course, but nowhere else? Is that correct? bone scan/CT was negative?

[Shooter1 in reply to Tall_Allen]

Read again. Pelvis, spine, right femur.

[Tall_Allen in reply to Shooter1]

Thanks.

[savingdaddy]

Hi Ray, I hope all goes well with your treatment plan. Take care and nice to meet you.

[RayF in reply to savingdaddy]

Thank you very much savingdaddy. I am sure your father feels much better with your support! My kids have been there for me too.

[Tall_Allen]

I hope the Zytiga lasts for a long time. There are lots of options when that fails. All you can do is take it as it comes.

[RayF]

Thanks Nalakrats.

[RayF]

I hope so too Tall_Allen!

My biggest question, or lack of understanding, is should I wait for Zytega to run it's course, or should I be considering other supplemental treatments.

[HopingForTheBest1 in reply to RayF]

Always have a plan B, and know what your options for next steps are. Be prepared for whatever may come.

[j-o-h-n]

Ok here goes my stuff.... Greeting RayF... Please tell us where your located and being treated and which doctor(s) - names help. That info helps us help you.

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 02/05/2019 6:25 PM EST

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

Yeah I need humor to keep positive.

I live in the DC area, not far from Johns Hopkins. My MO is a generalist, I need to find a specialist.

Keep us in good humor john

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

I go to Sloan in NYC, Unfortunately my great Oncologist is not taking on new patients... I'll try to ask him which MO he would recommend at Sloan. If I get an answer I'll get back to you ASAP. Hang tough!

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 02/06/2019 9:05 PM EST

[Litlerny]

Welcome, Ray. 😎. Big shocker, huh? It was for most of the rest of us, too. Ya, none of want to be here, but we are all glad that this forum exists...to learn, share our stories, successes, and failures, and commiserate when the latter happens to one of us. We are brothers, comrades in arms against a monster that is out to kill us. We don’t always agree with each other, but we all respect and care for each other. We share the knowledge we have learned. It has been really helpful to me. I hope it will be for you, too.

Your PSA at Dx was super low! Mine was only 4.65, but the cancer had already metastasized to the pubic bone (oligometastatic/one tumor). That was going on 4 years ago. Just got back from the Mayo in Jax an hour ago. PSA had been undetectable for 3 1/2 years...now rising very slightly to 0.15. I had Guardant genomic testing and an Axumin PET scan done today to see if there is any new bone tumor activity. Still waiting on the results.

Don’t be in a rush to use up all of your weapons, Ray. You’re off to a good start with the Zytiga+prednisone. I’m surprised, especially given the bone mets, that your M.O. didn’t also start you on ADT with Lupron and Bicalutamide. It kept my PSA down to undetectable for over 3 1/2 years. I also did 6 cycles of chemo with docetaxel last year when it first became available to oligometastatic hormone sensitive PCa patients. I had a choice between that and Zytiga+prednisone. I opted for the chemo because it was “6 and done,” while Zytiga+prednisone is long term and has its own set of side effects.

Remember that your cancer is an individual thing, unique to you. What works for someone else may not work for you and vice versa. Read, study, compare, and learn. The better armed you are, the better you will be at fighting the cancer. If you have a good PCa specialist oncologist you are going to be fine for a long time. There are no stupid questions where PCa is concerned. Ask questions...lots of them. When appropriate, challenge him/her...make him/her be at the top of their game.

Don’t worry about losing some strength and muscle mass. It’s inevitable. Accept it and embrace it as part of your new reality. I’m going to be 69 in a few days. I still golf 3 times a week. Last week I played 18 holes 3 days in a row. No bone pain. Moderate fatigue. My drives are about 20 yards shorter than they used to be, and my scores are about 10 strokes higher. So what? It doesn’t really matter. I still love the game and being out with my friends spending a day in the Florida sun. Even with Stage 4 PCa you can have a good quality of life. Keep doing what makes you happy, just lower your expectations a little.

And you thought you wrote a long post...😎

[RayF in reply to Litlerny]

Hey Litlerny,

Thanks for the comments and info. I also also on Lupron, if that is what is meant by ADT. I'll have a shot every 4 months, while on Zytega.

I have an MO, but she is a generalist, I am now looking for a specialist. I'm and hour away from Johns Hopkins, and a train ride away from Cornell Weill and Sloan Kettering. My son lives in NY, so I don't mind going there anyway.

I get scans at the end of Feb, hopefully my current therapy will show things have slowed down.

I'm very fortunate I have found this forum, I was walking in the wilderness

R

[Litlerny in reply to RayF]

You are fortunate to be in a great place, geographically, to two top notch prostate cancer centers. The most important thing is to find a good M.O. who spealizes in PCa.

I live just north of Orlando, FL. I had the choice of either the Moffitt Cancer Center in Tampa, 90 miles to the SW, or the Mayo Clinic in Jacksonville, 140 miles to the NE. I got a better “vibe” and more responsiveness from the Mayo. So, although it’s 100 miles farther round trip, it has turned out to be a good decision for me. My wife is a cancer patient there, too.

Keep us all posted on your scan results. My Mayo M.O. called me a couple of hours ago with good news on my Axumin Pet Scan...no sign of uptake in the bones, and only slight uptake in my left seminal vesicle. He said I could have radiation done on it, but recommended against it. I trust in his judgment. He as pretty happy that my original pelvic tumor has “resolved”...no longer a glowing hot spot on the PET image. I was ecstatic! He said since everything is stable he wants me to just continue on with my current ADT and see him again in 3 months.

I am confident that your Lupron + Zytiga therapy will give you a a major improvement in your PSA and your symptoms. Read up on the Sid effects of Lupron and Zytiga sonyou will know what to expect.

You’re on the right track, Ray. Kudos! Keep it up. 😎

Mark

[Hidden]

Hi, I am currently on Lupron (12/7), generic zytiga with prednisone since 12/28, and I am in my 4th week of salvage IMRT. I’m a G9 like you but it looks like the course of our disease is very different, so I really know nothing about that, but I do know that, having heard of a few people, and knowing one in similar situations who increased their activity levels by about 20 - 25% and found it helped a lot I thought I would, too. So far so good but typically the rough stuff doesn’t start till just about where I am now. Still crossing my fingers, might not work at all but I do feel better, get lots done. I feel pretty good and what I don’t credit to decent medical care and luck, definitely goes to exercise. And I do weights specifically to build muscle mass, and help keep my weight up, which is also working ....... so far. Anyway, wish I had something more helpful to offer but i’m Glad to see others do.

[RayF in reply to Hidden]

Thanks for your comments PSA, we're all in this together.

[larry_dammit]

So sorry to hear about the monster , my oncologist is very good and I trust his approach. I was diagnosed with Stage 4and Mets in my spine,ribs and lymph nodes August of 16, doctor gave me two choices then to start on the pills IE. Xtandi, Zytiga ect. Or do chemo. I was a very active 66 year old and went the other way . 6 rounds of chemo Taxotere with shots of lupron and Xgeva for the bones. PSA has been <0.05 since finishing chemo and starting on Xtandi. Been on it now for 30 months and holding my own. Good luck with your battle.

[RayF in reply to larry_dammit]

Hey larry, sounds like you are doing pretty good.

Making that decision was impossible for me, I knew nothing about it, and here I was making a potential life altering decision. It was hard.

[larry_dammit in reply to RayF]

Ray, all I knew was that my world was collapsing in on me. Had all the checkups,seeing the urologist every 6 months, had a test that said I had a 4% chance of a aggressive cancer in May of 16, August of 16 stage 4 with Mets. Can’t say I had it all together but did have a doctor I trusted and went with his recommendation and my wife has supported me. Fight the monster anyway you can , there are some really smart guys on this site,don’t be afraid to ask questions. 🙏🙏🙏🙏🙏

[bobdc6]

Ray,

To educate yourself, start here,

amazon.com/Key-Prostate-Can...

That's Dr. Scholtz's book "The Key to prostate Cancer". Dr. Sholtz is a medical oncologist out of Marina Del Rey, CA, specializing in prostate cancer.

The book is set up so you can plug in your personal diagnosis, and come out with a good general idea of what you should be doing, and when you should be doing it.

(I have no financial interest in this)

Good luck.

Bob, G9, proton, adt 18 months.

[RayF in reply to bobdc6]

Thanks bob, I'll check it out!

[Lombardi24]

It was the same for me to. PSA was very low (I was 54). It was 2.26 when I was diagnosed.

[RayF]

That is low. What treatment did you start with?

[RayF]

Thanks Break