Okay, i gotta to back to what i was doing...

Ok, i gotta get back to work, its been a pleasure...all the haters on this forum who want to criticize me because it infuriates me when you give motivational speeches and pithy aphorisms, or start ramgling about god, instead of giving simple science based or experential based advice, no hard feelings...i leave you with this:

1) Leuprolide injections + Zytiga at the same time, saved my life...the old school way of doing one first, then waiting for it to fail, before you do the other, is bad science, and simply cooked up by the insurance companies so as to avoid having to pay the $18,000 a month for the Zytiga lol...In sept 2017, i had a PSA doubling every 14 days, and i had bones mets to every visible bone structure..this combination of drugs saved my life....maybe it will save yours as well.

2) Oncologists love to give chemo, because they are in the business of giving chemo...if all you have is a hammer, the whole world looks like a nail...Does the data suggest that a patient with mets to numerous bones and lymphs will be better served by Lupron + Chemo vs Lupron + Zytiga? the data is ambiguous but i went the Lupron + Zytiga path.

3) Pithy quote and inspirational speeches will have no impact on saving your life. Work very closely with your medical team to design the best treatment plan..that may be Chemo, it may be Lupron, or Casodex or Zytiga or combinational therapies...ask alot of questions, and do your own research....

Peace and Love to all !

Brian

[Hidden]

And i will add something to the above:

My treatment plan, put in place literally when i was near death, the one that saved my life? was simplicity itself...i keep things simple...1) i get a 6month Eligard shot every 6 months (Leuprolide et al) 2) and every morning around 4 am when i get up to urinate in the middle of the night, i take 1,000 mg of Zytiga with a glass of water, no food obviously....thats it..dont make easy sh*t complicated....If you are Stage IV, and you are going to die at some point , keep it simple...find the best combinational therapy, and go with it....6 months ago i was near death, now I dont even hardly go to the doctor but once a quarter lol...it is what it is...there are a limited number of treatment paths for Stage IV...keep it simple

[Hidden in reply to Hidden]

And the last thing i will add is that I could argue i should also do some external beam radiation to the prostate and probably even add a few rounds of chemo, but Im not going to, because i dont think it will be a huge difference maker, it terms of survival time in my particular case, but such things may help your case as well

[HopingForTheBest1]

Glad to hear that Lupron + Zytiga are working for you, as I just started on this regimen 5 days ago after recently diagnosed with bone metastasis PC. I got an Elligard shot, not Lupron, but understand it is the same thing. Am also taking prednisone to mitigate side effects. How long have you been on this regimen?

[Hidden in reply to HopingForTheBest1]

I just had my SECOND Eligard shot (so dec 2017 and June 2018 for the shots of Eligard) and Zytiga for a similar period...so lets say I am on month 8, since i had a FIRMAGON shot in October 2017, and a 1 month Eligard in Nov 2017 (sometimes we start with a 1 month rather than a 6 month in case we have a bad reaction) so I graduated to the 6 month shot in Dec 2017, n just had my second shot in June, my next shot will be in December...i take the 1,000 mg of Zytiga of course, daily....my PSA is not detectable, bone scans look a LOT better, cuz 6 months ago i had enough active lesions to kill 5 men lol

[HopingForTheBest1 in reply to Hidden]

Nice, this definitely gives me hope. I had also started with hormone therapy 1 month earlier with a 30 day shot of Firmagon, which has now changed to the 3 month Elligard shot. So far I have had minimal side effects. How have yours been now that you are in your 8th month? Are they getting better, worse or the same?

I am also in a clinical trial where I will have robotic laparoscopic surgery several months from now, in addition to the standard of care hormone therapy.

[Hidden in reply to HopingForTheBest1]

I sent you a direct message chat on the side effects, but for others reading this: 1) hot flashes 2) SOME genital shrinkage, call it 30%...the combo of lupron and zytiga is potent and the Zytiga impairs CYP17, which is a very important part of sexual development, so ironically it can cause some genital shrinkage even though we are old and already finished development of our sex organs...its complicated..lol 3) some fatigue, of course...since on THIS combo you have literally NO testosterone 4) alot of my muscles turned to fat....5) i broke 2 ribs coughing last winter, likely result not of the CANCER in the ribs but the hormone therapy causes the bones to get a bit brittle...6) small amount of breast growth 7) no sexual interest...none, zero...when you are on this combo, it doesnt even cross your mind, ever...

All in all, not too bad,,,its better than dying...

[Mathes72 in reply to Hidden]

Ask your mo about xgeva for your bones,along with calcium an vit.D, just a thought,exercise,walk,it is a battle

[Hidden in reply to HopingForTheBest1]

I am assuming they are going to remove the prostate? Some new emerging theories suggest that even in diffuse metastatic disease, it has its benefits...tell me about the surgery, if you will?

[HopingForTheBest1 in reply to Hidden]

It will be done at CINJ by Dr Kim. Robotic & laparoscopic. It is a global randomized trial with a limited # of participants overall. Includes standard of care hormone therapy. It is open to additional participants. Expect procedure sometime in Nov.

[Hidden in reply to HopingForTheBest1]

You are making all the right moves so far, the Eligard, the Zytiga, and even the surgery, looks like you are on the right path...good job !

[Hidden in reply to HopingForTheBest1]

I take the prednisone as well, although i might only take 5 mg a day instead of 10 (ssshh, dont tell anyone !! haha)

[Grumpyswife in reply to Hidden]

FYI Several on here mention taking 5 mg of prednisone with Zytiga.

I was thinking about what my husband’s pCa specialist at a center of excellence told us 3 years ago when my husband lung metastases were found, removed and tested as prostate cancer.

We asked if there were other medications or treatments that he could start with ADT.

Doc said he preferred to get as much time out of each treatment as possible. By doubling up you weren’t sure what was working. Also, he didn’t want to use up his limited weapons too quickly. To his credit, he added Casodex when ADT quit dropping the PSA and said the next weapon would be Zytiga/Prednisone and ADT was probably going to be permanent.

In other words, you made an excellent point to bring this to the attention of newly metastatic men as it’s not a given.

I strive to be open minded On these forums to learn from others.

[Hidden in reply to Grumpyswife]

Glad i was able to be informative...I definitely understand where the doctor is coming from, not wanting to fire all his ammo at once, however, the scientific data is clear, (by mid 2017 that is), that using the Zytiga with the ADT was far superior...the results of the study, in fact, were stunning...urologytimes.com/modern-med...

curetoday.com/articles/zyti...

experienced scientists in the business, said it was the most positive thing they had ever seen in their prostate cancer careers...HOWEVER, there might be some instances where it is not appropriate, relating topeople with heart problems and other issues, so obviously, only an experienced physicians can make the final call...but to me? ADT + Zytiga is a total paradigm shift..that is not to say ADT + Chemo is terrific as well, but im on the Leuprolide injections and the Zytiga and im pretty freakin happy about it lol

[Hidden in reply to Grumpyswife]

here is another link

urologytimes.com/modern-med...

[Schwah in reply to Hidden]

Guys my guy had me do all 3. Zytega , lupron and chemo. The theory being that theres now proof that Zytega and lupron is better than either alone. And proof that lupron and chemo is better than either alone. So the logic is if A + B is better than A or B and B + C is better than B or C than wouldn’t A + B + C be best. My MO thinks so. Out of the box thinking but so was Early Lupron plus Zytega until mid 2017. I asked the drs at ucla what they thought and they agreed it made sense and they’d like a trial, but they couldn’t recommend it with out proof. The theory Also is that chemo/Zytegaand lupron all go after the PC cells in a different ways so perhaps you can get them all by going after them 3 different ways. So far so good after 10 months and .02 PSA. I’m aware I may be shooting all my bullets early but I think it’s my best chance for a durable remission. Dr scholz my MO and the other 2 Prostate oncologists in his office are using this 3 pronged approach regularly now with early success. Oh yes I also used radiation on my 3 Mets

Schwah

[Hidden in reply to Schwah]

i like it alot, and i think it is a likely path for many patients in the future, using all 3 etc....woth regard to radiation, thats a tricky one in that many of us (me included) have 50-60 bone mets and radiation is not realistic except as palliative / pain relief in cases of high bone pain from a particular region

[Dan59 in reply to Schwah]

Schwah, That does sound like aggressive treatment for sure, I hope you get a durable response. I have always been interested in what Dr. Scholtz is doing, may I ask do they recommend any supplements?

Thanks

[Schwah in reply to Dan59]

He just is like Tall Allen. I ask every time and he always says there is no proof that any supplements are a benefit as yet. And in fact there’s some indications that some can negatively impact the patient and/or interfere in some way with the meds. He does feel very strongly about early and aggressive treatments as soon as stage four becomes apparent.

Schwah

[Lombardi24 in reply to Schwah]

I wanted all 3 together but MO at Dana Farber wouldnt do it. Said had to do one and if it didnt work than on to next. They did do lupron and zytiga together. Doesn't matter now. Cancer is ADT resistant. 😑

[Schwah in reply to Lombardi24]

How long did it take to get CR?

[Lombardi24 in reply to Schwah]

About a year from diagnosis

[tallguy2 in reply to Lombardi24]

My MO isn't going to wait. Once I complete Taxotere chemotherapy I will immediately start Zytiga. Even if the PSA is undetectable.

[Hidden]

I am still on Cassodex but my PSA is now 1.5. Should I take a Lupron shot?

Thanks.

[cesanon]

"when you give motivational speeches and pithy aphorisms, or start ramgling about god, instead of giving simple science based or experential based advice, "

Agreed. It is some kind of self absorbed cancer derangment syndrome. Their particular form of superstition is relevant only to their own fantasy world.

Spamming this forum with their BS only impairs the ability of others to find the substantive help they need.

They have other non disease specific forums here for that selfish self absorbed crap.

[cesanon]

"when you give motivational speeches and pithy aphorisms, or start ramgling about god, instead of giving simple science based or experential based advice, " Hidden

"Pithy quote and inspirational speeches will have no impact on saving your life. " Hidden

Hidden, may I suggest that you kindly direct such commentators here where such commentary will be on topic, useful and welcome:

healthunlocked.com/anxiety-...

[Lombardi24]

Brian...I'm glad that combo (Lupron and Zytiga) worked for you. It didnt for me...well it did for several months anyway...but then PSA started doubling again.

[Rmanns]

You seem to be a real dick. l am glad you are doing well but you are assuming your success with Zytiga will last. l hope it does I hope you are cured l got 2 very good years before Zytiga failed I hope you get much more. But stop being a click.

[j-o-h-n]

to Hidden,

My first comment is that I wanted to use the user I.D. "Hidden" but I couldn't because it was Hidden. My second comment is that I'm glad that you've found your niche in your fight against those tiny little M.F. bastards. But please don't disparage how many of us fight our battle of survival. To each his own.

Good Luck and Good Health.

j-o-h-n Sunday 07/29/2018 12:53 PM EDT

[Schwah]

Allow me to try and bring some sanity to the discussion. While I vehemently disagree with “Hidden’s” thesis, what if for arguments sake he is right, and this site really does raise hopes more than is scientifically accurate. And what if the discussions on this site about God and faith may not include science and fact based research? I ask, isn’t that the point? Can’t this site provide scientific based information and also provide hope and comfort to those of us dealing with a stage 4 PC diagnosis? Is providing comfort and hope mutually exclusive with providing science based information? Can’t this site serve more than one purpose “Hidden”? I could understand your concern if an overly positive picture of our future was preventing us from taking advantage of all of the latest medical options out there, but I don’t even think you believe that to be the case. So why on earth would it bother you so much if someone on this site happened to see something to make him believe he’d still be alive in 10 years when in actuality you think he’s going to be dead in 3 ? Even if you’re right, Wouldn’t that person be happier during his last 3 years having had hope and not focusing on his near future demise ? Do you think that persons last 3 years would be happier if only he knew your truth that he was going to be dead in 3 years ? Would you be happier knowing that? I surely do not think anyone with a stage 4 diagnosis is using the info on this site to avoid getting their affairs in order or to avoid using the time they have to try and enjoy their lives. And do you really think those of us who find comfort in a God (whom you obviously believe is a joke) would be happier if we only knew what you seen to “know” to be the truth of that God not being real?

I urge you to re read your own posts “Hidden”. You are so kindly taking the time to let everyone know what you’ve learned about early use of Zytega with lupron because you obviously want to help others. Awesome! But your scientific info ironically refutes your own position that we are all being too optimistic. Lupron together with Zytega was shown to increase life expectancy by 40% vs lupron alone. That’s the science. Doesn’t that fact alone change your life expectancy times dramatically. Consider all the other advances already in place plus the many promising new ones on the horizon since the statistics you site were determined. Couldn’t all that make your relatively dated stats way off for those of us here and now.

Why do you wish to give hope with one hand and then try and take it away with the other ? What’s your real purpose? I’m not a shrink but it seems pretty obvious. You’re scared to death like the rest of us. Your latest treatment has basically brought you back to life from the brink of death. How incredible! You even say about yourself that this new treatment protocol “saved my life”. Doesn’t it seem strange though to tell us that your treatment “saved your life” while explaining to the rest of us that we are likely to die sooner than we think ? Why didn’t you describe your own situation as having “hopefully given me a few more years” or “it will come back I’m sure but for now I’m grateful it’s working”? Isn’t the answer obvious? You are just like us. Scared to death that your next PSA read will be bad news and never knowing when or if that bad news will come. So like all of us you just hope for the best that it actually “saved your life”, as opposed to just prolonging it. But what if your hope or any of our hopes, is false hope and we or you get that bad news at our next doctor appointment? Will any of us (or our families) be worse for the wear having had hope for longer than was scientifically appropriate? I think not...

“Hidden”, I urge you to follow your instincts and use your obvious capabilities and desire to help others, to be a useful part of this special community by posting your scientific information. At the same time i urge you to “hope” along with us that you and as many of us as possible will be around for many years. Or at the very least, make the effort to allow the rest of us our own hopes and faiths, as opposed to trying so hard to squash them for reasons unknown.

Schwah

[ctarleton in reply to Schwah]

"Big Hugs" for both Schwah and Hidden!

Charles

[Hidden in reply to Schwah]

Well said and thank you for posting.

[HopingForTheBest1 in reply to Schwah]

Right on!!! I have gotten so much by reading all of these back and forth conversations with Brian/Hidden. It has given me a well balanced view. The bottom line is that no one can tell any of us how much time we may or may not have. Need to think as positive as possible, for ourselves and for our loved ones. Keep fighting, research, ask questions and be your own best advocate.

[msnik in reply to Schwah]

Schwah,

thanks for your post. there needs to be room for hard science, personal experience, faith, etc.

I heard this man speak on the radio recently and looked up his book.....

nytimes.com/2018/06/03/opin...

I am an agnostic but I try to be respectful of other people's beliefs.....

as Red Green (tv show) used to say, "We're all in this together."

(wife, scared to death)

[Dan59 in reply to Schwah]

Thank You for your post and bringing sanity to these threads, and defining that this forum can be both Scientific based medicine, and dealing with the Psychological aspect of dealing with a stage 4 dx. It would appear from all the responses that a majority of us agree with you.

Dan