Today I'd a second opinion meeting. The prof. told me (for the first time I hear this from a doctor):
..." We need to try to make your fatal disease into a chronical one"
Since I'm not so convinced about ADT we will have another meeting to see what we can do, in my case, combining immune-therapy with radio. Next discussion the 8th of April; curious to hear what they can propose.
AFTER NOTE: Now I know why he told me the sentence above... look at that (I just received from Nature briefing):
What is your situation? Metastatic? If so, where and how many?
T3bN1M1 , Gleason 9 (4+5) some bones and lymph nodes but... under PSMA (several during the last year) they "oscillate"... sometimes signal, sometimes position... but, as far this concerns me, I do not care because I do not trust a comma in the presented statistics about protocols proposed today. For the moment only "alternative" treatments. Will have a big multidisciplinary meeting with all concerned "professors" next month to evaluate a possible combined treatment immune-therapy with radiation (doses and frequency to be designed accordingly).
ADT with abiraterone or ADT with docetaxel may increase your survival. I don't know what you mean about trusting a comma. Here are the life lengthening options for men in your situation:
pcnrv.blogspot.com/2017/06/...
Immunotherapies have so far been disappointing for PCa, but I think they may be somewhat better combined with radiation and ADT.
Hi Allen,
Thanks a lot, but your proposal seems equal to the one of any standard doctor... unfortunately ANY standard doctor would not bring things ahead (in my experience/opinion). So, will see. By chance, I've the choice about my life. I'm more worried to contribute that just enter in a "machine" where we all know what the end is.
But thanks, I'm feeling very well. Lot of sport, mostly vegan, no salt, oil or sugar and lots of supplements (since a year and the Ca is there... more or less "quiet") and PSMA's and MRI's :))
I’m an intuitive thinker....we’re missing something obvious....yes we can’t necessarily kill cancer but we may be able to deplete it to death.....alternating refractory pulse treatments.....our treatments need to be paused and then restarted with a rotating series of well working therapies. Not only will it target the bad guys it will give us a chance to recover our natural defenses.
If you’re in touch with this Doc Gattenby...can you run my theory by him....if not I will.
Dear Jbooml,
I do not know him personally and I do not live in US. I also strongly believe that our defenses must be "enhanced" before (and during) any radical treatment, I do not consider the ones that claim that using some "alternative" medications "interfere" negatively to the treatment. Yes, could induce some side effects but certainly not permanent as the ones produced by "tradicional" therapies.
Can you "destroy" cancer? not sure BUT if you are able to put him in an undetectable state better! Now, what really means undetectable? Just few years ago, my metastasis will not be detected (only shown with 68Ga PSMA and NOT via MRI and I'm talking about machines of the latest generation)... can be that in few years from now all micro-metastasis will be detected and then, all human beings will have metastatic cancer in some way... but your defenses, as you mention, can take care of those.
Adt can work ...no man wants this ..Good luck moving forward..
What I want to know is , Is that you on the sailboat ? Great picture ..
Dear LuLu700, thank you for your reply! About your question, I feel like the guy inside but it's not me :).
Very funny . “The guy inside” I know the feeling well.. This voyage is topsey turvey at best.. A lot to fathom ...you will do what’s best for you. Personally , my choice was life or death . I choose life and treatments. Or I would not be here today . Also I did an all out holistic change per my Naturapathic MD . From my experience I could not recommend any thing but and all out aggressive approach to push the pc down .. up to us to live healthy and pull ourselves through .. The more info you get here the better off you’ll be in making your own way . Peace
Very interesting and encouraging article. Thanks.
I'm an engineer and a finance guy so this stuff is way above my pay grade and I don't have anything to add, but just wanted to say that's a bad ass photo you posted above. Wow!
That is a fascinating read. I much prefer to see this as a chronic disease to live with and manage, just like diabetes etc... I also hate how black and white medical staging of cancer is... my dad was literally stage 1 then hang on no we skipped right to stage 4 ‘advanced’ because of a spot on a spine. Perhaps I am still in denial and coming to terms with this diagnosis but it just can’t be so black and white can it ?
Yes, you are right... but we also need to face facts which for me are:
a) everyone behaves and reacts differently on therapies and more tragically, MD, MO in general, do not collect properly data and make, not so cleaver design of experiments
b) no one has any crystal ball and most of the peer reviewed papers are garbage
c) Is really key to be informed but more important is to make conclusions and take decisions based on a critical review and nasty questions
d) If you are physically OK, don't react emotionally to the pressure made by "experts" and MD (see above) take your time because solutions that a MD offer in general is not REVERSIBLE and is on YOUR body
d) have a complete set point to your actual health condition (apart from PCa) ideally before starting any "traditional" treatment
e) try to put yourself in the best shape as possible (via life style changes if necessary) and try to keep it
f) appreciate and enjoy life in the way that you know best and remember that "taste" is related to being "acquainted" with the object in question (food, music or illness)
Love your avatar/icon photo.
Love your attitude, too. IN part because it corresponds to mine. When I was first diagnosed Aug 2018, the oncologists were all about radiation + "hormonal therapy." Respectfully, I told them that I recognized that they were all about "survival" because that is the oncologists' only metric. Issues of quality of life are outside of their awareness or concern. I found them dismissive of the side effects of drugs like Lupron with vague reference to "lifestyle changes." From what I had read of "hormonal therapy" (which is a nice term for chemical castration) side effects, I was having none of it. Still having none of it. If my PSA starts to climb again, I will have to reconsider options.
I am really impatient with the euphemisms of the medical world and their glossing over (because they do not have to endure it) the effects of their treatments on the lives of their patients. Longer life is not necessarily better life.
Hi dadzone43, you do not have side effects on ADT? Are you taking something else as "complimentary"? For what you wrote, I'm fully aligned with you.
Maybe also we could look at it from the drs angle a little bit. After about the 500th stage # 4 guy to come in it might be a coping skill to be aloof .
No. Strongly disagree though I understand what you say. Compassion in the first thing a healer offers. Aloofness is his/her way of protecting himself/herself from the pain. If the doctor is aloof or non-communicating, should change specialty or profession. I say this as a physician who is strong critical of the lousy job we do in communicating.
It should be first thing.I was playing the devils advocate...I’ve had drs that are compassionate healers and others cold and collect. I’m with you I don’t get it . Wrong profession with out listening to or compassionate speak towards their patients. Thanks for your educated view . I appreciate it.. Take care..
My uro was such a non bedside manner guy , cut and dry , literally a top surgeon but a bit calloused to the misery of urological suffering.
The drs kinda glaze over all side effects ...a trade off for life they are...
No. I was not clear: I decided against RT+ADT and had RP instead. That was 4 months ago. Now monitoring PSA. I talked to a number of men who were on ADT and decided that I could not live the life I need to live with brain fog, depression, weakness, weight gain, muscle loss and memory loss.
Thanks for precising! Makes sense for me! Let us updated and if I can help somehow...
"on ADT and decided that I could not live the life I need to live with brain fog, depression, weakness, weight gain, muscle loss and memory loss."
That's what most of us had said at one time or another. So here we are fighting the good fight. All of us don't like those shitty side effects but it's better than pushing up daisies earlier than we're supposed to.
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 03/27/2019 2:34 PM EDT
this statement is very personal... I prefer quality of life, for example.
As that great pundit Pee Wee Herman once said "To each his own"...
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 03/27/2019 4:10 PM EDT
I know who you are, but what am I? And he had his own Pee Wee to enjoy in a darkened movie theater. And what do we have? Popcorn - with lots of old maids.
Pee wee Herman ,get him and flip together and that would be a party , throw in checky green and Don Rickels and we’ve got a frickin party . Keep laughing at our irony, what a ride...
True, j-o-h-n ,99% of us here on Hu have done conventional treatments. You’ve done many., We are living “ with” APC...... living with lowered abilities .. this doesn’t mean that we are dead, I’m alive with joy every single day . Am I fuc&&& up ? Hell yah, but I’m alive and able to appreciate the world around me.. it’s taken me over 3 yrs to accept my lot fully . Life is more precious now ,once I’ve examined it well . Good day...
Welcome to my life.. The Good thing is that I was was above average in strength before RT adt and castration. I’m working on about 1/3 of my original abilities.. life goes on luckily for me . Without the blasted treatments I would’nt be alive ....... for me it’s all gravy ,until the reaper returns for its final swing...I’m just trying to hold that cocksucker off from me as long as possible .. good luck to you ..✌️
I had PCa for 11 years with Stage 4 bone cancer. On Christmas Eve 2018 my doctor called and told that there is no more cancer in my body. I am on Active Surveillance now. Since 2017 I have had 72 radiations and 6 1/2 years of Eligard shots every 3 months. There is hope of survival and listening to the doctors helps greatly. Keep helping all of us find a cure and checking things out.
I do not deny this at all. There are cases like yours, fortunately, and I cross the fingers for you. I just want to mention that similar results are also obtained with other strategies too. Point is: at what "price" following those "Doctors"?
It was Nixon claiming that cancer will be defeated in 20 years right?... Billions were injected and we are still out of any solution.... paradigm change is needed! At the end, near 60 years have passed since then.... and the "doctors" have already proven that they are simply not capable to solve this.
What gets me is that they "solved" the aids crisis in a short period of time but today's cancer is still yesterday's cancer.
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 03/27/2019 2:39 PM EDT
Also Hepatitis C was uncurable with high possibility to cause liver cancer but now it is curable disease (HIV is still not curable, but chronic with no death from it as far as they get treatment)
''chronic with no death from it as far as they get treatment"
We should be so lucky.....
Good Luck, Good Health and Good Humor.
j-o-h-n Saturday 04/06/2019 11:06 AM EDT
Hopefully, we wake up one day and read in the news that APC is curable...
Then we will die from poverty 
because such new drugs will be so expensive.
I wish you j-o-h-n best of luck fighting this disease!
Thank you Ralph, Well it would be better to die of poverty than a blow on the head from your spouse for being around too long.....(Insurance too).... and to you -
Good Luck, Good Health and Good Humor.
j-o-h-n Saturday 04/06/2019 12:41 PM DST
Hahah...ha.
“The meek shall inherit the earth.” I figure I’m golden... weak and broke .. se la ve. I’m still having fun.. “ pluck the day” .
Well we do know for sure that prostate cells (both healthy and cancerous) need an androgen to initiate cell division. We know for sure that there is a spot on the prostate cell called an Androgen Receptor (AR). We know that when a prostate cell subdivides it gives off an enzyme that is picked up by the PSA test. We know that if there are no androgens present the prostate cells get old and can not regenerate. We know that radiation slows down metastasized cells on the bone and can kill them. We know that the cancerous cells on the bone will soak into the bone, and if no androgens present they can not multiply and are stuck there like in a coffin. We know that removing the prostate can remove tumors inside the prostate. There are many kinds of cancers in the prostate, we each have different genetics, different doctors, different ages and we have other diseases. So one cure is not for everyone. But not doing anything can be fatal. I am grateful for all the men who have died figuring this all out. I am also grateful for people like you who keep asking questions.
hmmm... there is some misunderstanding here... I'm talking about principles not some small observations (nota bene "observation") in nearly 60 years!!!!
Who told about doing nothing? or you think that all that is not coming from doctors is "doing nothing" ??? BTW, most of the "discoveries where not made by "doctors".
Anyhow, I think that their approach (pure phenomenological) will not bring far (proven already).
good luck to you. kr
We each have to choose our path on this journey. Every treatment available has side effects, whether the expense, physical or emotional. Immuno-therapy is very expensive, and often who's paying the cost determines whether it's available or not. Some treatments are not available until standard of care such as ADT, radiation or RP have been tried and failed. Quality of life is important but a balance can be made with overall survival too. Good luck with the 2nd opinion and keep asking questions.
Have you ever Been to the Indy 500? The month of May in Indy , very fun. I have deep Hoosier ties.. wondering if you are one?
No, sorry the Indy refers to Independence where I used to live at an airpark with my homebuilt airplane. Sold the airplane and moved to a cheaper abode in another town. I probably should change my alias here.
Na, it’s good . You’re a pilot , keep independent and flying high ...Thanks
Dont be sorry,I like the name..Homebuilt plane and hanger... That must’ve been fun..?
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