To My Fellow Thrivers,
As I enter the third year since my stage IV diagnosis I was thinking about how little practical information I received from my providers on the topic of living, and hopefully thriving with prostate cancer.
I’d like to generate a list of great tips and insights to share with newbies. What vital pieces of info do you wish you had known at the time of your diagnosis?
Thanks for sharing!
Don't join phase I clinical trials just because your professor of oncology wants to put you into one.
Wise. Sounds like you had a poor experience with a trial?
I wouldn't join any clinical trial, but I feel that I am cornered into that.
I wish to use up all standard of care options before even considering a clinical trial.
The clinical trial I'm in requires the patient to be "treatment naive" which means no previous treatments so that is not an option. FWIW, I'm not taking an experimental drug. You're painting with a very broad brush here.
You Wrote:
"But out of all the cancers you can get, PCa is usually one of the “best” "
That is not true for a stage and spread where I was at my diagnosis.
Maybe you are low volume etc.
You can't generalize it to everyone.
I think APC should be divided into APC -> HRPC and HSPC . Former can be "best" while latter no much.
I see your point but when I was diagnosed and started treatment I was hormone sensitive despite PSA 1600, skull to shins bone mets and torso full of enlarged lymph nodes. It took about a year to become hormone resistant.
You must be a lawyer.
I would just say tha post asked for APC and not about PC, you can argue that APC is also only a PC.
There are enough misleading information about prostate cancer so we don't need more.
I totally agree with you about the amount of misinformation about prostate cancer that's out there. It has been one of my biggest frustrations because people don't understand the seriousness of my disease date.
I wanted to knock my radiation oncologist in the teeth several weeks ago. He commented, "well prostate cancer is slow growing and the Lupron kills the cancer too". WT#! 🤦♂️🤷♂️
I wanted to reply there's a reason I'm here getting 33 rouunds of ebrt and lupron because within 8 months I have had a recurrence and my psa went from .1 to .4 in about eight weeks. That's not slow!
Or the biggest watered down statement, you have a better chance of dying with it than from it! Only possibly rue if caught in time and low grade!
i have exactly the same feeling. Even more some of our members here believe that this cancer is not very serious. Do not underestimate this deases. It will kill you.
i was offered by professor Epstein intermittent ADT, but I flatly refused.
the absolute best advise I can give is to do weight training at least 3 days a week for at least an hour to all muscle groups. ADT removes your testosterone which can make you turn to mush which makes you tired and gain fat. Advantages of weight training :
1. Helps you lose weight
2. Keeps your muscle that will go away completely on ADT
3. Helps keep your energy level up
4. Proven to extend survival.
5. It actually improved bone density with the use of those dangerous drugs like zometa etc
I work very hard at it with a trainer and my side affects are minimal from no T.
I will tell you a funny story that I’ve told here before but worth repeating. After my doctor told me that I had to do weight training because every one of his patients who did it, did well on ADT and those that did not, did not. So I found one of those short musclemen who won some Mr. America contest I’m sure in his younger days and went to see him. I took off my shirt and said I’m going to have zero testosterone and I don’t want to look worse than this a year from now. He said “if you look like that after a year in my gym I’m going to close the freaking doors“. Lol. His point was that he trained many women with no testosterone and you can still build muscle without testosterone if you lift weights. I hate every session and swear it will be my last but it has helped tremendously and I’ve actually added a little muscle with zero T
Schwah
Love your story
I wish someone would have told me this in the week following my diagnosis.
When I was diagnosed I started walking every day, regardless of how I felt, but neglected weight training. After joining this forum and seeing post like yours I started lifting and I feel so much healthier and vital now.
PS - Your story reminds me of some of the ripped women who used to work out at the grunt and groaner gyms. I'd lose pretty badly in a flex off with any of them.
You are a perfect example of never too late to start. Congratulations on having the courage to do it. It’s not easy I know but hugely rewarding. By the way, one more benefit. I was actually able up substantially improve my bone density Thru weight training without the use of those dangerous drugs like zometa etc.
Schwah
Do weight training if and only if: (a) you've done it before; otherwise, you'll hurt yourself and (b) under advice of a physical therapist (not personal trainer; all those 20-year-olds know how to do is "make you big" or get you "in shape".
One of the most difficult lessons I've had to learn is to not act like I'm sick, but to allow my body to tell me when to back off or make a change. Maybe the loss of T has helped...
All muscle groups every workout?
I’ve been wondering about switching to that now that I’m on ADT, but it’s counter to everything I’ve learned and practiced in 25 years of lifting.
Are three lighter sessions per week on the legs as beneficial as one heavy one for ADT patients? I need to research this more.
I was a pretty muscular guy before all my TURP and cancer crap started, but now my strength at the gym is down 30% and my body shows it. Shouldn’t have let ADT malaise keep me out of the gym my first month.
One thing’s for sure, nothing like a great gym pump in the morning to make you feel better all day long…this was true before ADT, and mostly true on ADT.
I’m going to search for discussion threads on this topic.
I would be interested in what you find.
For the first year after diagnosis I walked everyday, then I decided to add in resistance training (thanks to this forum). I now work out with a universal gym and dumbbells 2-3 times a week. I also walk 4-7 miles -- 3-4 times a week. The weight training has really helped my fitness, but I have not been able to add any bulk.
I'm shooting for 5 miles per day, every day. Was doing that before, and managed it 3 out of the last 4 days, but hip pain (presumably from the met in my pelvis) makes it an unpleasant experience sometimes. You'll need adequate protein to add bulk, either with or without testosterone in your system.
At this point, I'm just hoping to keep the muscle mass losses in check.
I eventually settled on 6 days of strenuous activity (a mix of walking and lifting) and a day of rest. Seems like it takes longer for my body to recover and 6 or 7 days of walking every week was taking its toll.
I’ve already noticed longer recovery, much longer, for lifting heavy. A day of rest is probably a good thing.
I noticed someone preparing to go on ADT has just started a thread on this topic.
The day of rest gives a real boost to my energy over the subsequent days.
You are welcome to post, but you should know that they asked you about advanced PC. I belive you could move to a simple PC group. This is advanced PC.
If you don't want to write about advanced PC. I am not a doctor but believe that you have advanced PC. Maybe yourself are not aware of the seriousness of you cancer. I advanced you to move to a cancer center of excellence. I don't know where you live and what can you do but you look very capable. Better find out from Dana Farber if you are curable.
Regards
István Hoffmann
here is the “regular “ Pca group healthunlocked.com/prostate...
You don't have to leae the advanced group if you have advanced PC.
You can just join the other group in order to write about PC in general at an early stage.
I also like to read about other stages but maybe not in this group. At least that is my personal interpretation.
I agree with you that PC and APC is preferable to a lot of other Cancers. No one WANTS cancer but lots of men with APC live for 5 or 10+ years. That often isn't the case for other cancers such as the ones you mention.
Hi Russ. Please do not leave. You are one of our most valued, innovative, helpful and kind contributors in my opinion. Maybe quantify some postings by saying that you are diagnosed Oligometastatic but please do stay with us and by all means join the other group as well.
Graham
Know that there is extremely wide variability in response to, and especially for severe side effects, from various treatments. This includes ADT drugs, AART drugs and chemotherapy.
No one is actually the median patient. If a treatment is disabling or not tolerable then ask for an alternative. And trial tested dosing that become what is FDA approved may be too high for some, and not even necessarily.
Clinical trials typically use “maximum tolerated dose” to try to best demonstrate efficacy. However, this is often not the “minimum effective dose”, abiraterone 250 vs 1000 mg being a case in point.
There are “standards of care” SOC which are established bests for various clinical situations. This is a starting point or foundation. Then individual requirements may require modifications, substitutions or additions.
MB, good points. I remember being overwhelmed and confused by all of the medical terminology and the accronyms (like SOC). I kept a list of new info to research or ask my care team about. Even so, I'm sure I missed vital info.
I bet you could write a book on what you know on the topic.
This is a good post you created Carl. I'll have to give it some thought.
I've always thought in retrospect a lot of advice was not communicated by the original "diagnoser" lol. The Urologist. But then again looking back at his mannerisms and behaviour I think he was as panicked as I was to see a guy like me.
I think from him to my MO at first everything was "we got to save this guy from immediate hospice" rather than discuss treatment side effects and how to best live with them and the diagnosis.
I think very few get entailed information/instructions.
We have the fat, the fatigue, the muscle loss, the skin changes, the crotch rot if not on top of it, cognitive issues, etc.
I was angry for a while at the lack of information (like that I could maintain my erectile tissue and still get an errection @#$%^&*!!!), and the conflicting info in the outside resources I read. This site taught me more about my cancer than my care providers.
Hi Russ. Sadly no. Spread to over 5 places upon diagnosis in bones and lymph nodes plus a very high PSA. However, hopefully as my current PSA is low it has been knocked back like yours. Please do continue to post in here any studies and updates on your journey if you feel like this group will benefit. Personally I have found all of your posts helpful.
Graham
don’t leave this group because of one person’s insensitive and un constructive response
Hi Russ I am in that group so im watching you! Lol
Malecare is honored to support your care
Thanks Darryl. Can't tell you how much Malecare has meant to me in my APC journey.
Smurtaw, I read your Bio. I urge others to read his Bio (just tap on his picture icon). You are Gl 9. T4a. You are Adv PCa patient. You belong here. Also, you are smart and are a valued asset. Please stay here. We are all looking for extension of life, and quality of life. We can all post what is working. Mike
thank you Spyder! We all need a lil more grace
Russ, I am Oligometastatic also. But still belong here. This month Oligo, what is future?
Mike
Who decides what is advanced? Let alone here on a forum of non-doctors, lol...
We go where we want, hang out with those who we want to. Nobody decides for us! We get our membership card when we get our congratulations for joining the reluctant members club, that includes an all access pass to everywhere PCa!
Advanced... What a hoot! A neat little box with a label, used in order to try and fit a patient into a risk stratification group, that will supposedly and conveniently allow for the provision of explanation as to their possible treatment path(s) and result(s) that Oncologist will use as well in order to try and define morbidity and mortality standards exhibited by other patients that were also placed into those groups!
Thats all a lot of baloney!!! Because every patient is different, and although we might mimic a risk stratification, it doesn't mean we are actually aligned with it, or will react as others have, or that we should be there at all. Maybe if all those who have REGULAR Prostate Cancer treated their diagnosis as ADVANCED they would never become it (advanced) in actuality! Who says they will or won't? Statistics? Funny because I didn't know Cancer can add/count! 
Cancer doesn't pay attention to numbers, and it doesn't care what we call it!
I have a few mets, does that lower my risk(Oligo)? Or does the uncharacteristic and little precedent of it's manifestation in my peritoneum and appendix grant me advanced status? What about presence of Intraductal? What about MSH, BRCA, CHK2, Lynch Syndrome, etc., etc... So technically, I'm in a group, all my own! Should I abandon and refrain from hanging around with all you regularly advanced guys!? Because none of you are in my class! Gleason be damned... Lmao!
That all aside, I gain knowledge, have gained knowledge from those in "all" risk groups and would be remiss to limit myself to just those I might belong to.
Have fun and get on whatever ride you like at this amusement park! Just hold on tight!!!
Best Regards
cooolone Cameron Crowe could not have said it better!! 😂
Carlosbach, the conversation morphed. Back to your original post and question.
Yes, a Center of Excellence is key.
Do your research. Listen well to your Dr’s. But do your research
Cruciferous vegetables are really proven in trials to fight PCa.
Excercise, Weights, Cardio. Do what you love.
Western Medicine does work, and should be part of your multi pronged approach. So does Eastern Medicine. Balance them.
Provenge has proven to extend life, yet has little effect on PSA. Early is better. It seems to have better effect on lower PSA patients according to Oncologist Carlos Alemany.
Do not under estimate the power of the mind (look at the Placebo effect for proof). Create quiet time to meditate and connect with your body, mind, and spirit to work together in healing. We only use 10% of our minds power. Send out blessings/prayer to those you love past & present. It feels good.
Pay attention to ASCO (American Society of Clinical Oncologists) Meetings. FDA approvals often follow these meetings. They communicate well with each other on what is working.
Follow Human Trials. I watch several. Especially Phase 3 Trials. STAMPEDE is one of the largest with 10,000 Men. Multiple Arms (A thru H).
Watch for Cardio side effects. Something like 28% of Men with APc will die of Cardio event, Not APc. Weight, Metabolism, Excercise, Diet all related.
Listen well, there are many words of wisdom on this HU site.
So far SOC (Std of Care) has not created a cure. To supplement this with your own N=1 trial to learn if there are other therapies that work for you (maybe no one else) is worth sharing. Let us decide for ourselves. In the end, no stone unturned. A combination could be out there that would benefit most of us.
I believe we are all in a giant human experiment SOC has changed 3x since my Dx in Oct of 2020. Change can be good. Remember we have APc guys on this site that are 15, 18, 20 yr survivors. We can learn from them.
Finally, my quote: “it all works, yet nothing works well (curative). Maybe with the right combination of therapies, in the right order, we will get meaningful extension of life”
Mike
Provenge has proven to extend life, yet has little effect on PSA. Early is better. It seems to have better effect on lower PSA patients according to Oncologist Carlos Alemany.
Provenge can be used with or right after a mans 2nd run on chemo therapy. And also in combo with Ra-223. Both cases are not "early" but instead are after initial chemo, 2nd generation adt, etc. have ceased to hold back the cancer.
Your a positive guy Mike. Do you have a link to Dr. Carlos Alemany's views on this. Possibly dated or just plain opinionated on his part. However it is true that evidence seems to show early as better with Provenge but I/we shouldnt dismiss it. I need as many treatments as possible to look forward to as I burn thru them over time.
thanks Campsoups. This came from a meeting one on one with him. He put his notes on a board. I took a pic w my phone. It looked like hyroglyphics. My wording “early” was wrong. His wording was…”Provenge works best with lower PSA.” He then gave example of less than PSA of 5-living longest, less than PSA 10, less than PSA 20, less than PSA 40. Adding Provengevabove PSA 40 there does not seem to be any advantage for extension of life. He added that 2 consecutive rises in PSA to qualify for ins reimburse. Mike
Thank you Mike. Appreciate it.
Yea its coming back to me now too and if I wasn't so lazy I would look to some of my saved "stuff" but yes that's it (George Carlin would have something to say about my stuff lol). At lower PSA which often equates to early but yea thankfully "at lower PSA" so can still be valuable after treatment that brings down the cancer volume no matter where in the sequence of treatments and "synergistically" in combo with some treatments.
Mike, Thanks for your well thought out comments. I would expect nothing less from you in light of the the journey you've taken in search for answers.
That’s an easy one. What I wish I’d known most was that since my biopsy clearly showed my tumor butting against the edge of the capsule, very likely escaping microscopically (which it was), surgery was almost certainly not going to be curative. Therefore not a good choice for me.
I’m one of so many who naively chose surgery in that diagnostic space, and those who knew better said nothing to discourage it.
However, things have worked out well so far and I did have a very good result from the surgery.
Of course, my good result is actually probably due to all that was subsequently thrown at it , in a clinical trial, but who’s counting.
Yeah, my urologist was trying to get me to sign up for surgery before the subsequent scans showed lung mets. I was flying blind, and he was pushing his own agenda.
Glad to hear that something worked. I have the feeling that since the disease is so homogeneous, we are all just individual experiments.
We are that! But the techniques are getting better. If there had been sensitive scans when I was diagnosed in 2019 I would have had better info obviously.
At least I paid for the MRI guided biopsy which the idiot insurance company wouldn’t pay for. I only say idiots because of the 2 page idiotic explanation of why they were refusing to pay. I would have respected them more if they were merely cheap😀
Great luck to you!
For sure, having this disease sucks, but if you have to be diagnosed with APC, the silver lining is how quickly the science and treatments are developing
Russ, let me reiterate that the vast majority on this forum greatly value your contributions so please don't be put off by the odd negative comment. It's great that your PCa has moved from APC to just "normal" PC - we all want that result.
Many wouldn't be here including Tall_Allen if you had to still have APC to be eligible!
What did I wish someone had told me when i was diagnosed???
6 numbers and that supplementary # that would artificially inflate my bank account and allow me to live like a Rockefeller Trust Fund baby!!!
Lmao!
👍😂
Beat you to it Cooolone, I'm on social security - basically the same thing. Right?
I do admire you for your desire to be wealthy enough to become a philanthropist. Mackenzie Scott is available, maybe that's another shortcut you could try.
lol... Who said anything about giving it away! I was thinking more Charlie Sheen stuff!!! Hahahaha, go out in a blaze of glory 🤣
And yeah, I got that, did that too last year, cashed in all my chips, SSDI, etc... Told the kids my job is spending their inheritance now and trying to meet the boatman with the accounts all empty!
Funny thing is I never figured to have as much or more $$$ retired, than when busting my back working for a living!
Had you figured for a big heart, not hookers and blow😇
hahahaha, yeah, true true... that's not me, but before we go shouldn't we try everything, at least once!?!? Climb Mt. Everest for example?
Really, lmao though thinking about it....
Definitely something I'm sure is more glorious in thoughts, than in reality! I have no desire for either, would rather spend both time and $ more judiciously 
of course.
Now, back to reality
Within reason. I'm planning on hiking the Pacific Coast Trail this winter (virtually using the Conqueor Challenge app). Probably won't find me on the slopes of Everest because I get too damn cold on these meds.
Wow! That's awesome and sounds pretty amazing! Definitely keep us posted and updated!
Glad you're staying. Too many people have left already.
Hello Smurtaw, there was a post on here a few days ago from Lulu700, entitled “ SHANAH TOVAH “ I guess you read it, I joined in as it was just great to enjoy the camaraderie, we need to laugh and stay positive.
So stick around and enjoy that along with the rest of us.
Take care.
Carlosbach, likewise...man if I could have a do-over; my short list...I am not a Doctor and if this is my 'brain dump' of what I think I know about this disease...TNX
1. Loyalty; you don’t owe your doctor any. If you sense need to change providers strike out.
2. 2d 3d 4th n 5th Opinions; get as many doctors to review your case as you can. Don’t stop until you are satisfied you have 3 doctors telling you the same thing. Insurance will pay for this.
3. Baselines; get baseline tests for everything. Bone density, PSA levels, CBC blood levels, blood pressure…every time you enter a new phase of treatment make sure you know where you are starting from physically and physiologically. If you don’t have a baseline how do you know you have been ‘impacted’ by your treatment and to what degree?
4. Advocacy; no one but I mean NO BODY is going to be a better advocate for your health than you are. Do not depend on your Doctor to watch our for your health; they are busy treating symptoms…act before you get them.
5. Knowledge; in the age of the Internet there is no excuse for ignorance…stupidity is knowing the wrong thing; ignorance is knowing nothing…know your disease, research you case, watch YouTube medical journals until you are certain you understand your condition. THEN go armed with questions to as many doctors as you can…be satisfied they have considered your questions and addressed your concerns.
6. DRE; its not a guarantee of safety. My prostate was 1/3 full of tumor and neither of my two Urologists felt anything; it was in the front part of my gland (transition zone) where it was not palpable…PSA should guide your search for the truth.
7. PSA 4.0; is not a guarantee of safety. From what I understand its basis is simply 2 times the standard deviation of the average PSA of the original 1980’s cohort that helped establish this marker as a PCa diagnostic tool…not kidding; it means NOTHING…at age 60 your PSA should not be higher than 1.0…if its 2-3 you need to be referred ASAP.
8. Parametric Pelvic MRI; for my Sons they will start out their lifelong monitoring of PCa with a baseline MRI…see what they have at the time they start their journey. Pay for the darn test if its not covered. Then if you have a rising PSA and a negative DRE AND your PSA is above the normal level expected for your age, get an MRI ! Rule out any tumor; don’t wait for the PSA to keep rising (as I did) then demand one when its too late…use the MRI as a ‘uber’ DRE as it should be!
9. Genomic Testing; if you do a Biopsy make sure its guided by your PaMRI (see note 8)…then get the Gleason score for the plugs as it is a useful metric to have; one that will be used with many nomograms to help you manage your disease. But also send the Biopsy specimens for genomic testing; Decipher is what I would suggest and it’s the best…use the combination of the GS + Genomic rating to choose your treatment. GS alone is not enough. A high Genomic score may mean you are a high risk patient regardless of low GS.
10. Surgery n Selecting a Provider; you need to have the knowledge of what is coming if you have surgery for your PCa (cant address RT as primary treatment, but will for early Salvage). At your appointment with your surgeon you should expect to have 1) the doctor, 2) a Erectile Disfunction and 3) a Continence specialist present. If the facility you are going to use does not include these three branches of treatment FROM THE GET GO, seek another facility.
11. Salvage Radiation; if you have recurring PSA after surgery consider eSRT (early salvage radiation). Lots of studies now show this is linked to prolonged progression free survival and OS for high risk PCa patients (see 9 above). Get as dry as you can before eSRT and know that whatever leakage you have going in is what you are going to have for the rest of your life. If you wait for more continence do it on ADT, don’t allow the PCa to grow…but if you get radiation before you are dry you are never going to be dry.
12. VED; vacuum erection devices are prescribed but never explained as to what they are really good for…mostly they are prescribed for erections with which to try and have relations with your partner. A larger issue is that they must be used by men like me who cannot tolerate penile injection treatments for the pain they cause. You must stretch and exercise your penile tissue continuously or it will atrophy and shrink…you can and will lose length and girth if you don’t use a VED or injections regularly…am scheduled this year for a penile implant…BUT if you don’t protect your length and girth the implant is not going to give it back…be forewarned.
13. ADT; I was on Lupron for 6 months pre RT then 15 months post RT…21 months total. I did not suffer hardly any symptoms. But I committed to a regime of 3 days a week in the Gym with weights, daily bike rides and power walks on the weekend…basically 7 days a week…I was obsessive about this and for me it worked…they say the more you exercise the fewer symptoms you have. Also, ADT has a significant impact on your erectile tissues; see the note a 11…
14. Act don’t Wait; PCa is a process that is like having a series of ‘check valves’ along the way down a long tube…you can go forward but you can never go back…so this makes men hesitate and do nothing…whatever you do don’t do nothing…PCa waits for no man and it keeps moving forward even if you don’t. Use these and other tips to get smart, ask good questions, weigh the odds, make a decision AND JUST DO IT! Each step of the way you revise and review what has happened, rev up the same process and do it again…the only way PCa wins is if you give up…to quote Winston Churchill; ‘never give up.’ Cheers
Excellent advice that I wish I had received early on. For instance, I had so many clean DRE's that the biopsy (when I finally got one) was no big deal.
I also wasn't told about the atrophy of erectile tissue. I was told that I would lose sexual function due to the Lupron. Not true, and now my wee willie is actually a wee willie.
…glad u told me this. I thought I was crazy…I was told NOTHING from any of my Dr’s about impacts of my treatment to Penile tissue health. The focus was on erectile function, the erection but nothing on health of the tissue. For me I stopped Trimix as it hurt like he#l to which my Dr said; ‘Kh yeah. That happens.’ No explanation at that point as to WHAT would happen to me over the next year as I stopped both injections n VED…I found out the hard way by noting damage. That’s when I started to read and behold all this knowledge base came welling up.
So much is not explained. I don’t know why. I suspect Drs found out if they explained all the pros n cons to men, really told them what could happen that 80% would ‘do nothing,’ as I wanes again. Only explanation
This issue is one of my top 5 with my initial care team. The only sexual health advice I received was a flat pronouncement that I would lose my ability to get an errection - and that I would lose any desire for sex. So when, after a couple months on ADT, my errection started to flag, I resigned myself to that part of my life being over.
Then, it wasn't, I started getting erections (smaller and unreliable, but something!) while loving my wife. Kicked into high gear on the pump, viagra, and eventually Trimix. Whole new lease on a sexual life and we're seizing it. YAY, just wish I had back the tissue that atrophied.
PS - I found that two thinks made a big difference with Trimix injections
1) The needles. Some brands are dull and they hurt like a son of a b.
2) Making sure I keep the shaft straight, and not twisted in the least bit, before and during the injection
PLEASE stay!
👍👍👍👍
Never give in, never give up
My urologist who gave me the news was mostly worthless after he told me that my scans showed that my cancer had spread. Before my dx I casually exercised a few days a week. My urologist told me not to run anymore and gave me little hope. I was 46 at the time, now 50. I started seeing a prostate cancer Dr. at Duke and he told me to keep running and keep exercising. I also changed my diet to healthy options, no fast food, mostly plant based (my choice). I've never been a long distance runner, mostly 2 or 3 miles every other day. I continued to do that and lifted weights. I also started taking day trips to the beach to ride my boogie board like I did as a teenager. Over the last 4 years, I've run about 1,400 miles and rode over 300 waves. The best advice is to keep living as much as you can. I am now castrate resistant so we will see what is next. In the mean time I'm still working, raising my twin teenage boys and visiting my daughter at her college.
Impressive amount of exercise and activity. I'm particularly impressed that you are so active and engaged while receiving treatment. 👏👏👏
Your regime and mine have a lot in common (except for I've walked the 1400 miles 🙂). Good luck with the next phase and in continuing to LIVE your life.
Thank you and same to you! Check out Irun, he ran marathons while doing chemo I believe.
Yeah, you runners and bicyclists amaze me. I gave up basketball and running at 52 due to knee pain that continued for days after a run or a game. Eventually my knees made anything but casual cycling too painful as well. After a year of prednisone and some significant weight loss, my knees were pain free and I tried to resume running. That was a painful mistake. Therefore, the walking.
For winter and the bad weather I'm going to start using the Conquer Challenge that Dockam recommended.
Create a support group network of established support groups, friends who have traveled this path and professional supports (PCF, MaleCare, ASCO, etc.). Never stop asking questions....and demanding answers from your medical care team.
Thank (insert your favorite deity here) for my friends and family. For instance, my son called me every night at 7pm for the first year after diagnosis just to check in with me and offer support. His dedication really buoyed my spirits.
At my first appointment with a MO the Dr. had an attractive female resident training with him. He spent 90 minutes impressing us with his knowledge. However, I think he was shooting for 5 minute appointments. On subsequent visits he would almost audibly groan when I pulled out my list of questions. I'm in an HMO so it took a while to get shed of him, but thankfully I went outside of the HMO for a second opinion and then started to be in a place to make better decisions on my treatment.
Don't think I can afford her, but thankfully, I now have boobs myself. Maybe I should flash them around at the start of each appointment. On second thought, maybe not.
I had one Oncologist tell me that, "In this office I decide how we treat cancer." I was gone from his office very quickly.
I researched MO's in my area and got a second opinion from a very qualified female Dr. She was Outstanding, and not arrogant at all. I was going to switch my care over to her, and then she left for another organization.
hopfully not because of you
I didn’t know that you and I had met. But apparently you know me pretty well 🙂
Most of my doctors, even back to the flight surgeon in the Navy 40+ years ago, were women. They're not all angels, but by a far margin they tend to be more attentive, more respectful, and more compassionate than the male doctors I've had.
My Uro, MO, RO, and PCP are all female and I think they're great.
I was surprised at the number of females specializing in prostate cancer. I think it's great that expertise is not limited to gender. Fortunately, males are not excluded from showing respectful attention, and compassion. My new PCP is a 30 something male, and he has been fantastic. I wish he was an oncologist.
Could be in some cases, but I think its just like the general population, there is a percentage of people of any gender who are arrogant, impatient or just generally crabby. However, I know that testosterone generally made me more aggressive than I am after 2-years on ADT...
1. Assemble the best team of oncologist possible. Don’t be afraid to fire a doc it’s your life.
2. If you have pain most oncologist don’t care as it’s not their speciality. Find a good palliative care Dr. They can recommend drugs or other options such as homeopathic care. Tin my case I work with my Palliative care for not flash’s , neuropathy, chronic. Vomiting . Then pain clinic for my back pain from compression of my spine.
3. Take time to absorb what the disease means to you , that will allow you to share with others in a non threatening way. I think my relationship with some friends has changed. Need to understand what made you friends. I gave up golf after cracking my T11, so I lost track of my golf buddies.
4. Get ready to cry like a baby once you start ADT. Don’t worry it’s the drug .
5. I’ve been living with this disease for 9 years 8 of which have been stage 4,
I lived the first year thinking the worst and I still go 4 wheeling , fishing, hunting ,gardening. I’ll quit when I can’t have fun doing it
I think that first year is so critical. I felt like i'd received a death sentence, and that life was either winding down or ending. I was overwhelmed by my illness/fatigue and weakness, and no one said that those were side effects and that there were ways to minimize their impact.
Now I'm like you, very active and engaged in life. Hopefully we can help resource others through those challenging times.
When did you have your last 68GA PSMA PET/CT scan?
Stay...We've lost waayy too many valued posters for reasons I don't understand, but I miss many who left.
what was the result?
all my bone mets gone.
none visible last week Thursday on 68 GA PSMA PET/CT
Seasid and Smurtaw, your PMSA results are OUTSTANDING!
We will see.
As you know there is also a PSMA negative cancer possible.
i am thinking about Feromuxan MRI (nano MRI) to double check my lymph nodes.
what do you plan to do?
what would the Dana Farber oncologist recommend?
do you plan to do something?
are you curable?
would you ask for second opinion someone knowledgeable in order to cement your results?
i also know that it is lurking. Scans only pick up above 4mm lesions.
if you ask about second opinion from a cancer center of excellence it doesn't mean that you should change anything.
as Tango65 said. If you have to make an important desission it is better to inform yourself properly.
well, I don't know...
you could gaine if you consult someone knowledgeable about a cure.
You don't have to do it, but why not?
i belive we should try to make good choices.
my personality type lives in possibilities
Aw Smarty, you can run but you can’t hide, all of us like you too much!
Sounds like you've got a great team. Congrats.
I agree, that as newbies we would all benefit from a consultation with a specialist. I was prepared to pay out of pocket for a consult, and the session with the speacialist and thouroughness of her report would have been worth it. At that time I had just started on medicare, and shocker, they picked up the tab for a second opinion.
QOL is huge. I'm older than you and my kids are grown, and most of my grandkids are as well. My intial goal (when my life expectancy was supposedly 2 years max) was to see my grandson graduate. At that point I would have had to beat the statistics and make it 6 years. Now, I'm working towards seeing my youngest granddaughter graduate - and she's currently in preschool.
I'm kind of afraid to ask my wife what she thinks my "best by" date is
Smurtaw, this is why we are happy you stayed. Can you elaborate on P-Value? How is it often mis-used? Mike
I like reading your posts . You seem to have delved deep into most topics here.
120 Replies. Wow!
Took a few side trips, but several people have put some damn good thought into their comments. I've learned a lot, and so much of what has been suggested aligns with things I wish I had known as well.
I really appreciate how much information I've learned on this forum, and it seems like I learn more every day.
glad to have you whizzes around to decipher statistics. I’ll have to stick with making bad jokes
Yeah, I thought I was the class clown in grade school because I memorized some extremely bad "Dad" jokes from a joke book I bought from scholastic.
I know in some countries they whistle instead of applaud. where I grew up they must have thought that eye rolls were another form of applause and approval. Especially the girls once I got into middle and high school
what was the testosterone formulation which achieve castrate levels?
did you consider professor Sartor from New Orleans?
where do you live?
good. What the RCT use?
i see
i believe that you are a feeler and that you have a J letter your personality type.
people here don't have any problem consulting multiple oncologist in order to make a best decision for themselves.
you should be more flexible in making good decisions.
i am not saying that your way is not the best. I am just saying that in general it doesn't hurt to get information from different perspective.
For example it is a good idea to consult an MO , a urologist, a RO, nuclear medicine doctor, neurologist, Neuro surgeon etc.
You are knowledgeable but they know more then us.
we all should have a team.
I agree with Cesces that it is more difficulty to bs in a team.
that is why I believe that we all should build up a team looking after us.
i really need a neurologist now.
Smurtaw, thanks for taking the time to explain P-values. Guess I wont put much emphasis on it. As I have said, each Man presents differently, and responds to therapy differently. A truly heterogenous disease. P-value different for many sub-types. Mike
please clerify this for me:
you wrote:
"One of them is using one of the testosterone formulations that I use, a long-time frame, and the dose is almost identical to the dose I picked (396 mg vs 400 mg). I talked to one of the MOs running the trial about why they decided on this testosterone formulation, and the answer was very appealing to me - short half-life so actual castration levels are achieved."
what is the testosterone formulations what they (the MO running the new BAT trials) are using and it is the same as what you are using.
do you have a link to the BAT clinical trial which one is using 400 mg oral testosterone undecanoate?
maybe the doctors are not so connect as you believe. opinion
They would not discuss it between themselves that you are asking for second opinion.
wow
is she Tanya Dorff?
if not you may wish to talk to her. Highly recommend.
i wouldn't care hat she thinks. You have a right for second opinion if you wish to have one.
you don't have to rush, just keep in the back of your mind for the future
istvan
Do you also have these symptoms?
Do you that have had Orchiectomy still take ATD Medication? 
What Drugs do you use while on CHEMO
Hey y'all - I'm doing a PCa 5k in Joliet Illinois in June with an HU APC caregiver 
