Yes, I've found the PSA cut-off for Scans is 2.00ng/mL. Trying to wrap my mind technically medically around Clinical relapse definition. Not doing so well understanding C-Re-Lapse.
1. What is a Layman's def of Clinical Failure or Clinical Relapse?
I could or should do some research myself but my mind is in on overload with Abiraterone and Prednisone 18 days in and still forcing me to exercise 2X daily. Any places I could look for mind overload EEC Doug?
One can get lost in the jargon and words as there are so many words,
How I understand "clinical relapse " is that clinical symptoms such as urinary issues, bone pain etc have returned....that to me is clinical relapse.
"Bio chemical relapse"..on the other hand is ...thesr is increase in the biomarkers such as PSA, ALP etc. but symptoms are still under control or absent.
Clinical relapse means a cancer progression can be detected with imaging, e.g. CT/bone scan. If you get a PSMA PET/CT this will show progression much earlier. Also, a relapse is the case if symptoms occur, these are mainly bone pain from bone mets or urinary problems because the cancer continues to grow in the prostate.
👎. No bueno..
Wow or woah... couldn’t have expressed it better bigger bestest LuLu700.. Thxs Depotdoug
Sorry to rant on you . You can see that you’re not the only one in strife. Take care 😎
Oh EEC is my acronym for EXCESSIVE EXERCISING COMPULSION. That keeps my mind off PCA maybe...
It is a good habit. Keep rolling 😂🌵
My MO strongly suggested I focus on weight training to minimize the Lupron SEs. Great advise. I work out with a trainer 3 times a week for 90 minutes. All weights in all muscle groups. 15-30 reps 3 sets. Not huge weights but you gotta push hard. My guy kills me. I golf and walk a bit so that’s all I do and I feel great and gained muscle mass which I thought to be impossible.
Schwah
I’m doing the same. I’ve had 2 PFT’s 1st one Feb-Mar 2018(Sydney)and Sue month of Dec. They both got me exercising correctly and hard. Reps till fatigue vs sets. But all body parts.
Like this: 1. Monday & Thursday “Leg day” 2. TUE & Friday CORE day 3. Wed&Friday UPPER BODY. Plus cardio workouts before or after each of these days W/O’s. So far so good. Oh but it’s Sunday, I’ll get a fun treadmilling and elliptical or cycling w/o in today.
My EEC is
115 miles bicycled 12/31/2019
110 miles bicycled 01/01-02/2020
50 miles bicycled 01/04/2020
5K+ walk at 5:30AM with wife(longer if knees weren't bone on bone), some breakfast, then 30-50 miles bicycling =
a2c for me, or addicted2cycling ;0)
p.s. -- 01/12/2020, this Saturday, have a local 12 hour cycling event that I will extend slightly to complete 200 miles bicycling. If PCa doesn't kill me HOPEFULLY the cycling will do it.
Where do you do all that bicycling! ? It’s got to be warm. I do inside EEC ing at two fitness places since I’m in Ft Wayne, IN brrrrrrr.
INSIDE EEC is something I just am not wired for. Your " ....Ft Wayne, IN brrrrrrr. " is more like BRRRRRR !!! for this SW FL boy since 1986. Finished the 5K+ a bit ago with the temp. at 50°F and pert-near FROZE!!! ;0)
ROTONDA West has 90+ miles just riding its roads with the rest of the peninsula providing plenty of nice pavement cycling albeit BORING, just the way I like it.
Sun is up and temps are rising now out for a refreshing 30-50 miles.
It’s a whopping 31degrees as I pull into my church parking lot. My wife and I lived north side of Tampa late 1984-Feb 1986. It wasn’t long enough. We had both returned from KSA other wise known as Saudi Arabia. Txs for the update. I can still walk fast or jog from home around my fav hospital in 16m.
Clinical relapse means you have clinical symptoms , for example bone pain , urinary urgency or clinical signs that is found by your doctor ,for example changes in prostate by digital rectal examination or reappearance of tumor that is detectable in imagings . biochemical relapse means psa elevation which is considered as disease relapse since cancer is so virulent and you should be treated with plan B before you feel symptoms .dont be stressed out, let’s keep our fingers crossed that Abiraterone will supress the disease
Yes! 😎
I have lived with Pca since about 2004 when it probably began.
But Psa rose to 5 in 2009 and I got diagnosed, and it was gleason 9, inoperable, so then I had a long procession of ADT, EBRT, plus add on drugs like Casodex, Zytiga and my Psa went up an down and nothing was a recurrence, because all this treatment merely slowed or suppressed my Pca, and after I began having PsMa Ga68 scans in 2016 I watched my number of mets grow despite the drugs and my good fitness, and I have never worried about "clinical" failure or relapse because I believed Pca would eventually kill me, because I missed the chance to get rid of it when I probably had a Gleason 5 score in 2004 and when Psa was low, and when probably no spread had occurred, and when an RP probably would have occurred, and thus probably would have had Psa go to < 0.01, and be considered undetectable for next 10 years. This surely is a clinical success. I met men who had same ADT for 2 years, and same 70 Grey of EBRTto PG and 10 years later they still had no "recurrence", which means that their radiated PG did not again develop Pca. My Pca merely continued on and on and on.
Lu177 seems like its worked well but this time next year I could be having palliative care when nothing has been found to stop my Pca growing back up again. My last Psa was 0.32 in late Nov 2019, PsMa scans in August with higher Psa after Lu177 showed bone healing and no soft tissue mets. When my Psa rises again, I have to face up to fact its very highly likely, so I'll get yet another PsMa scan and maybe more Lu177. Or whatever docs think may work.
The docs will be there when I want them but they ain't magicians. But there's much research continuing on treating Pca after initial Lu177 has "failed" even though it "succeeded" to give a man and extension to his lifetime and betterment of QOL for awhile.
Patrick Turner.
Yes, me too Patrick- Turner, me too. My Dx(orig) was July2005 7.6ng/mL and I opted for non-invasive 42 quality IMRT zaps at my prostate specifically mapped and targeted. Maybe, maybe not. What was the accuracy of IMRT 15years ago? I have no idea. But like you said I could of or should of or had the chance to have a RP. Surgery was not on my agenda 15 years ago, I was a vibrant 53yo and living life to its best. Drinking, imbibing and partying hard but wasn't listening to my cardiac BP and hypertension symptoms either.
If I had a Radical Prostectomy or robotic PG removal that also would have been impaired by my Neurogenic bladder that I had no idea I even had until EBRT(IMRT) CT scan mapping and planning. Go in for Radiation planning and the RO finds a non-functional bladder.
Fast forward to present day technology, yes my 1st 68Ga-PSMA-11 scan was only 5 months ago but it was effective, accurate, and proof positive enough for my now Med Onc.
I'm now on, I'll call it a continuing journey of ADHT do it again 09/10-12/10 2019 and repeat March 10-2020 infinitum. I agree Patrick-Turner my last PSA was down to 1.100ng/mL but not out of the ballpark. I mean not bottomed out. I shall repeat PSA, T-Levels, Liver and Lymphocyte blood labs in 3 weeks, which will be with (5) weeks of Abiraterone acetate(Zytiga)… still haven't got used to saying the Z-word absorbed or assimilated in my body parts. Guess I'm trying to say is that I betting on my PSA to bottom out somewhere below 1.000. IF that makes sense. Then continue on with Abiraterone and Lupron and blood monitoring.
Conclusion: (my thinking) my PSA is not high enough to qualify for my next 68Ga-PSMA-11 or CT or NM bone scan yet. Until that yet becomes a fact there is no need to comprehend more diagnostic tests on my body. But if my Liver functions, or Lymphocytes, or Kidneys, or Cardiac enzymes or electrolytes or bladder goes ballistic I will wait patiently for PSA labs,, and love those phlebotomy sticks.
Thanks for relating for me your life's journey Patrick_Turner.
Doug
Just think it we managed to get slightly old in 1020, living in UK.
We would have got all manner of diseases which would have killed us and ppl would have blamed it on evil spirits or the devil or on our past sins, or because we didn't pray. There were so many life situations which were quite deadly, like being rounded up by a local baron and told to fight the invading Vikings, or the army raised by another baron who wants to take over everything . There were no good old days, life was routinely short and brutal and lived with everyone being grossly ignorant, and full of fears.
Pca seems to give many of us time to contemplate the many actions of well educated doctors ( who ain't witch doctors or faith healers ) . Equipped with knowledge we can manage to go where best available treatment is located and thus extend what would otherwise be a short life.
I may find my Psa goes to lower nadir, if it has not already done, and then rise, and then maybe docs might have me get DNA tested to maybe treat because I probably am Brca2 positive, because I had sister die of Oa, other had Brca, but survived after double mastectomy +HT. But her womanly self esteem collapsed a bit. I've been castrated since 2010, but remain feisty as ever in my war against bullshit. I don't give a damn about not having any sex appeal. But from here on, treatment of my Pca may become a bit experimental no matter what any scans show, so I just gotta get through it, pay up, and maybe die if treatment don't work.
Life is grand until I un-live.
Patrick Turner.
IMO, just have to Keep ON Keeping ON best we can.
Feeling extremely humbled (& fortunate?) when reading your trip report and others knowing that my GL10 was confined when found in 2015 but realize it was there longer since I delayed biopsy when PCP felt it in 2014. Immediately went for the scalpel castration instead of chemical to lighten the load and make my endurance bicycling much more comfortable. Living by the PSA reports, testing this Friday, but by NO MEANS worry since "IT IS WHAT IT IS" and just Keep ON Keeping ON.
I don't mind a little bit of worry because it spurs everyone into action.
I must soon get ready to cycle 20km to local hospital for follow up meet with a gastro surgeon who fixed me up 5 weeks ago for bowel blockage due to scar issue adhesins to surgery in 2010.
Weather has cooled, smoke from bush fires has lessened, so I can cycle.
Patrick Turner.
RIDE ON !!!! We have riders using mask or clothe over mouth/nose and don't even have smoke.
Dec. 2015 after treatment had Mr. Foley inserted for 10 days. With Mr. Foley's tube still inserted and travel bag strapped to right leg under long sweats, it was just 2 days after procedure I bicycled 5 miles to LBS(Local Bike Shop) to simply say high to the Saturday morning ride group. Got there and before I shook hands with the guys I stopped them walking towards me and said, "Hold OFF!!!" then a "AHHHHH!!!" and then told them "I just peed" as I lifted the pant leg showing them the bag. They laughed like crazy fools and said I was crazy. Made me feel good and they felt much more relaxed being around me
I know that feeling well. Been there done that a my go - to fitness places. The more I treadmilled with Mr Foley the more I drank exercise water juice the more Mr Foley expanded. Like a safety storage extra baggage 🧳 device.
Or mini-fire extinguisher?? ;0)
I am fully continent so I don't need pee or poo bags.
Smoke here from fires was negligible today, there was a tiny bit of rain, so I rode 17km to hospital and averaged 23.2kph, not too bad, over took 2 other yunga blokes. Doc said all was well with guts, pleased to see me on the bike in lycra, then I took long way home with big hill in middle and I felt real good after 47km total. I am back to normal.
Overcast with rain clouds, so cool, good day for cycling.
Patrick Turner.
P-T wrote --- " ... I rode 17km to hospital and averaged 23.2kph, not too bad, over took 2 other yunga blokes... "
Way to GO !!!
I prefer the bicycle to driving a Maserati, or Lamborghini, or riding a BMW twin or nicely restored Ducati.
The Cannondale is my way of Going, but most other folks hate bicycles, and I really don't care what other ppl think, say, or do about it.
I do drive a 1986 Ford Laser, aka Mazda 323, an awful car, but cheap to run, and I only do about 3,000km a year. I cycle much further than I drive each year.
Patrick Turner.
Cycle more than 4 wheeling transport! Your a real killer for EEC’ing Patrick Turner
I believe in a simple life.
I practice having a simple life, I pay for having a simple life. I feel like I have a simple life. This means I have personal unity, where what I believe, practice, pay for and fee about is all one thing, same, not a whole big terrible lot of inconsistencies and hypocrisy. My minor issues of voting habits, eating and drinking habits are also simple. Ideas about right and wrong are so simple that I conclude that other ppl's lofty ideas about theology, and economics are founded on a foundation of horse shit. Or bullshit, take your pick.
Of course all that meant I was un-marriageable. Well, I never expected to have everything I could have.
The practice of Medicine is where those who want to ease the pain and extend the longevity of humans is based around their idealism and science, and they get to be able to do it. Of course some are greedier than others, but most I meet have their heart in the right place, and a man can only luv 'em.
Its been a nice day here, not too hot, and the nation is contemplating the loss of 1,500 homes in the recent bush fires, so far. There are so many who have a terrible future to face. The Federal Govt has turned to act,
and its a welcome move, and I know I should not talk about politics or anything not to do with Pca, I think we have our preference for staying on topic, often because politics solves nothing, but I see there's good intent and good action being taken by our politicians so what's the problem in anyone reading about that? Why mock good news?
I'm alive because the good ppl in the world invented some good stuff at the right time. There's more good than bad in the world.
So cheer up folks.
Patrick Turner.
Cheer up hard to or accomplish today or maybe tomorrow too. Cheer up? Probably not. Ask me why...
I like to keep busy, and the bicycle teaches me fitness of mind and body, and I often aim to get something done sooner than I complete it. I have always been a bit like this, and that idea worked fine to get from 20yo to now. Others drift, but I paddle, ( or pedal ) maybe put up a sail to get along faster.
Had a good ride this am, only 30km because smoke from bush fires drifted in, but I got a pack of masks, so tomorrow I could ride OK without lung damage. I feel real good right now.
Riding into the smoke and haze masked man. Love your attitude
With a mask. I avoid facial recognition by about 50 cameras I suspect are probably out there, to supply vast amounts of picture data for robots to eat, then poo out info to cops about ppl up to no good.
I have no mobile phone, but I bet The System knows me as I cycle past the residence of the Prime Minister. I sometimes fart going past, and cameras are not that smart.
Patrick Turner.
Stay Safe Patrick-Turner
Why not Zytega now. Usually Minimal
Additional SEs and clinical
Studies showed combined early use with ADT reduced deaths over 40%. It was a game changer so why aren’t you playing?
I am on Zytiga (abiraterone acetate) now started 17Dec per my MO’s direction. Plus standard prednisone.
Yes, still on Lupron 90 days 2nd inj.
19 days in on Zytiga and no SE’s(maybe slight warm flashes). Still exercising. Next blood labs a bunch in 3 weeks... thanks Schwah
I believe I’ll be on Zytiga for a year ..
"It didn't work"?
Is there a reason you’re Med ONC justifies it didn’t?
?
Ok if some treatment, some med, some radiation, some invasive procedure didn't work. i.e. Zytiga(abiraterone) then my Med Onc better know what will, and ask me to start 'what will' ASAP. Or its time to switch MO ships.
Got it ... At the Michigan prostate cancer meeting in November, the keynote speaker offered this: Prostate Cancer is not a cornfield. Prostate Cancer is a meadow.
That metaphor would work well in the Midwest -- and it is _brilliant_. No two prostate cancers are alike. Yours may be a "sunflower" while mine is a "shooting star." No oncologist can know every thing about every individual cancer. S/he can have good ideas about "what will" but cannot know with any certainty. Doctors are doctors of * medicine* and not of divinity. I know there is no comfort in that for you or me or any other patient. But it happens to be true.
Agreed totally dadzone43.
My case is unique to me and only me. Throw in my:
1. Neurogenic bladder
2. Strictures(urethral)
3. Neuropathy-super poly
4. NSVT- non sustained ventricular tachycardia
5. AFIB
6. A MEDTRONIC interstimulator 2nd device implant.
7. ICD/pacemaker 2nd device implant 1 yr ago
8. 2 DVIU repair procedures
9. CRYO-ablation for AFIB control
10. 3 Cardioversions
That’s me in the last 15 years.
Yep we are each unique a complex complicated medical living creature, under control of medical professionals not really.
Thxs dadzone43.
Radiotherapy clinical trial opinions
Time is running out, please help me to help him understand
Visit to MD Anderson, Houston, if you want to consider a second opinion.
My experience with clinical trials
