Hmm. Slept on my Results to get them FRESH in the AM

[greatjohn]

Age 61,Stage 4, Dx 57, Stage 4 (4/17)

Results from latest PSA came Online last night at 9 pm. Decided it would be best to wait until the morning to read them...so I would have a whole day to process whatever the results are. Still woke up every 2 hours..and slept terribly.

I Had my coffee in bed and headed for the computer at 8 am. They weren't good. In six weeks up to 1.83 from 1.33. This is something no one can understand...but in my situation the PSA to be "good" should be appx .03 and be constant. Rising PSA and a PSA over 1.0 is a bad indicator. I go back again in 6 weeks...Will be working on the next phase of the "miracle project". Life is Beautiful.

[kmack57]

Keep up the good fight, I'm pulling for you!

Kevin

[greatjohn in reply to kmack57]

thanks Kevin... The roller coaster continues ....

[YostConner]

GJ, those kinds of changes used to bother me, too. I’ve gotten used to swings. Keep up the fight!!!

[greatjohn in reply to YostConner]

I've been told mine pca is moderately aggressive stage 4. just hoping to not have to start with more aggressive treatments again (just finished chemo end of January) so that I can make our big 25 day trip to Europe in August on just Lupron which is bad enough....😜

[Mathes72 in reply to greatjohn]

John,I am in the same boat(not to europe) I an on zytiga with pres. went from o.1 to 1.3 in 8 months,on lupron,xgeva,had chemo. AN PROVENGE,last summer a n fall,you will go to europe,

[Hidden in reply to greatjohn]

If you’re going to be in Europa in August.The sooner the better you get this next step done so you can recovery Sorrry for this glitch in the machine. Persevere friend!

[greatjohn in reply to Hidden]

well...they haven't even said I need to start something else..YET. I see him every 6 weeks so I'm 5 weeks away from new PSA...that will probably determine things. I told them about the trip earlier and now I've got a lot of unrefundable parts to it....AND more importantly..I WANT to go! ! ! and that time is the only time that makes sense to get out of south Florida...our July/Aug/Sept are somewhat unbearable (even without the hot flashes). England, Ireland and Scotlands..."sound a wee bit better" for 3 weeks!

[Dan59 in reply to greatjohn]

By all means go on the trip, that is why we even do these treatments. I am going to England to tour Cornwalls small fishing villages in early June and looking forward to it, 6 weeks will make no difference anyway and treatments can always be postponed a bit so we can live our lives.

[Hidden in reply to greatjohn]

Maybe give it more time then .You need a break . Europe is sounding pretty good right now. Good to have a goal to luck forward to.

[Tjc1]

Have a good timer on your trip. 1.33 to 1.83. How long was that?

[greatjohn in reply to Tjc1]

just 6 weeks...and just 12 weeks from Chemo...1.33 was as low as I got. The doctor last visit said I had "moderately AGGRESSIVE stage 4..." ~~whatever moderately means...I wish I could get a LOW PSA for once...hmmm. I never went below around 3 after radiation the first time when they said I was a Gleason 6 and had 99% chance of successful treatment. I was not supposed to be "aggressive". Just goes to show...."you never know..."..but as. friend said to me this morning.."it's not over 'till the fat lady sings". But I really wanted to make it through August/September for our 3+week holiday in Europe ...on JUST Lupron. Still got fingers crossed. ~~John.

ps. hope you're doing well. Oh, and I'm feeling very good with decent energy and strength...so lots to be thankful for!

[gusgold in reply to greatjohn]

Don't take a radio...you don't want to risk hearing a fat lady sing

[Hidden in reply to gusgold]

Where is that Bitch? She didn’t mention my name did she?

[greatjohn in reply to Hidden]

tee hee...that's what we don't want ! ! !

[Schwah in reply to greatjohn]

Adding Zytega to the lupron while on your trip shouldn't be bad so hopefully that's what they suggest. . I'm on both for the past 7 months and I feel great. I know the difference is that I do weight training for an hour 3 days a week. Lots of energy and no sude affexts other than I need Viagra to have sex and maybe can do it once a month. Studies show zytega with lupron increase life expectancy some 40%.

[EricE]

Thanks john. Though I am still a rookie, I am learning fast. I too would have waited for the morning, and then tortured myself all night, so very human. Hang in there. You are right life is beautiful and we want you to stay has healthy as possible so we can all enjoy it. Praying for lower numbers. E

[greatjohn]

thanks Eric! I love bagpipes...our trip includes Scotland in August.

John

[dockam]

Hey man,

Damn cancer! I forget, are you also on Casodex - to prevent T uptake by the PCa? Have you had the T measured? On Metformin? I'm on it 500mg 2x/day and am doubling it for now. Quercetin may boost the Metformin anti cancer activity.

news.utexas.edu/2017/06/06/...

I'm also on Ursolic acid, Curcumin and resveratrol.

I still fast from 9pm at night to 1pm the next day. Low carb, whole grain, no red meat, no dairy, no poultry, lotta fruits and veggies

Fight the good fight and you got this! I took a 10 day trip to London last year to visit son and it was epic.

Randy

[greatjohn in reply to dockam]

no..I started the Lupron right away back in early spring of 17 and then did Chemo starting in Sept of 17....finished end of Jan 18 and just on Lupron every 3 months right now. I'm thinking that the Casodex is in my NEAR future..... Thanks! My testosterone (if that's T?) is like 8 when they check it... I'm evaluating my diet which is NOT yours...and I love it..LOL..but ....I want something that works...so taking steps that direction.

John

[Litlerny]

If your testosterone is only 8 that’s a good thing, in spite of the bump in the PSA. The Casodex should help knock the PSA back down.

Just go and enjoy that European Vacation! I liked your final comment and the positive attitude that it implies. Life really is beautiful. One thing my Stage 4 PCa is to never take anyone or anything for granted, and to have a greater appreciation for all the ways my life has been blessed.

Mark

[greatjohn in reply to Litlerny]

thanks Mark,

my issue that's just "pinged" is that it looks like I am (after just starting Lupron just 10 months ago)...showing signs of "castration resistant cancer" ~~I just read your post...I have NEVER...and I started early with Gleason 6...& had radiation right away ...EARLY...and STILL have NEVER in the past 4 years been under 1.0 for a PSA. They are as of last visit calling mine "aggressive"...which makes me "aggressive"...LOL...and cranky, although...like you my bone mets all disappeared after chemo..and most of the lymph node mets didn't show up or were down to about 1/2 size. After that result on my PetScan...(aximun) I was so thrilled and thought I would be able to "lay back" and enjoy (ha ha) just taking Lupron for a while....especially for the rest of the year and including this holiday coming up. I couldn't tell your age from photo but you're close to me...I'm now 61, so it's like I went for 60 MPH to ZERO in 15 seconds...I was dx first at 57 (4 years ago) and with Stage 4 last March (2017) at age 60. I was crazy busy, active, working out, swimming, walking....and the sessions (43) of radiation...and then follow ups and then more treatment with HIFU and then more biopsies and more tests and ....then "EEEEEK" ...the castration...

also...good luck with your Chemo...I was thrilled with my results from it...and think I might should have asked if I could do 3 or for more...I was given 6 sessions. When I asked about whether more would be good ...they said no...and I didn't argue, because, although I was willing to go more....I was really ready to try to get back to normal...the last couple of them really are the worse. I think now...2 or 3 more might have beat it down lower...because it seems like THAT is what really brought my PSA down...

also, with my rising PSA they have ordered a Testosterone test every 6 weeks along with the PSA...because there might be the chance that it's not staying low enough on the Lupron. If it is staying low on Lupron and PSA is still rising....then it will confirm resistant cancer. (which I am hoping is not the case)

Life is Beautiful....(and my favorite line from the post) ~~"will be working on the next phase of the "miracle project" ..." LOL

Good luck! ! ! wishing you the best on the journey!

[Litlerny in reply to greatjohn]

Man, you have had one big e-tcket ride so far. I’m always positive and hopeful, and when I’m not, my wife kicks my whiny ass back to being positive. I always do have some apprehension when I do my quarterly lab work and MO visit. I always get on my Mayo patient profile, and breathe a sigh of relief each time my PSA stays undetectable, and my testosterone 8. I know that some sunny day that won’t happen, and I’ll have to deal with where we go from there in terms of the treatment plan. I try to not lose too much sleep over it or dwell on it. I like the “miracle project” concept. I think everyone in here is doing their own miracle project. Hang in there!

[j-o-h-n]

Hey GJ, You know what you need? MiracleWHIP....for your project.

Good Luck and Good Health.

j-o-h-n Wednesday 04/25/2018 10:56 PM EDT

[greatjohn]

I'm on it! sounds like a plan!

[Hidden]

Somehow you’ll flip the cocktails around to get the correct formula to push that PSA away for some time. Don’tgive in mentally , you’ll find the right thing. I get my results 4-30, I pray for good , if it goes south I admit that I’ll flip out . Too . APC or as I call her Ms. PAC-Man , is out to eat us alive..some guys can avoid the void for years or decades.The one thing that I feel that we can not do is to just sit back and capitulate to this H@. Hang in there big man!!!

[greatjohn in reply to Hidden]

back to my old self...(the new old self..lol) already. Just bummed me out for a couple of days hearing "moderately aggressive" and seeing my PSA inch up a little when I was hoping it would nose dive after the chemo. It did go down from 17 before to 1.33 and now at 1.83.

so I appear to be on(or should I say above?) "solid ground" ~~for now....with no aria's being rehearsed yet.