well...my PSA Graph Starts just after adding Xtandi to my Lupron....hoping for the opposite of what the trend says.

[greatjohn]

I started in appx June/July on Xtandi (added to Lupron)....and it's been an upward climb. It's like my PSA has helium in it. Nothing can hold it back...LOL. My Axumin Pet Scans have been showing really good results...with everything shrunk or disappeared...but, alas, my PSA has a mind of it's own. I'm now getting these Axumin Pet Scans every 3 months...which seems excessive...but I guess it's the only thing they can do to get a "good" result for me. The lowest my PSA ever went (just after Chemo Early last year was .86) so it's just a real bastard. Seems like I'm still in the "Fast Track"...which is NOT where I wanted to be...

[greatjohn]

I just got my 2 new bottles of Concentrated BIRM.....I did ask about Indomethacin and they said "not yet". After my next scan...I may insist.

Thanks!

John

[ctarleton]

Some Oncologists might take more than a mild PSA trend into account before folding-up shop on Xtandi. Scan results, any symptoms, other blood work results, etc. Mentally, you might consider preparing yourself to be able to remain as calm as possible, in the event your doctor should say something like, ..."I think we should wait until your PSA is above 5, and perhaps approaching 10, before thinking about stopping Xtandi. It still may be working OK for many of the cells in your body, even if some are mutating and becoming resistant."

(It's Never easy being on a PSA roller coaster ride, but, it's probably a relatively good sign that your graph doesn't like like it's trying to do a loop-the-loop yet.)

Charles

[greatjohn in reply to ctarleton]

Thanks Charles!

[EricE]

Hang in there man, The fast track is too Type A. You should take one of those slow track turnouts, take a nap or do push ups. Hang in there GJ. We are all pulling for you. How's the chicken?

[greatjohn in reply to EricE]

Thanks Eric...I'll hope my scans stay good.

John

[NPfisherman]

Agree with Nalakrats....get some indomethacin--Phase 2 trial now for breaking resistance to enzalutamide... Good luck....

Fish

[FCoffey]

I understand the frustration, but remember, PSA is a proxy. It is NOT cancer. If imaging is showing good results while PSA stays the same or climbs a bit, I'd put more weight on the images.

There are many reasons the PSA might rise, including changes in the fraction of PCa cells that express it. One explanation for positive imaging results and PSA rising is that the population of cells expressing PSA has gone up, while the population of cells that don't express PSA is going down. That's just a hypothetical, and I don't claim that is a good thing or a bad one. It's unlikely that imaging results would be positive if the cancer was actually growing.

Every three months for an Axium sounds like a lot. There is a substantial dose of radiation from each scan. At some point that begins to add risk.

The only reason to do any test is if the results will change your treatment. Some pointed questions to your doc about the need for all those scans might be appropriate.

The first rule of radiation safety is to avoid any dose unless medically necessary. With the scans you already have, the doc has a pretty good idea of where the lesions are and which ones are of concern. Perhaps MRI could be used to image those - no radiation at all, very good image quality, and many papers show equivalent or superior ability to detect tumors compared to conventional PET/CT scans.

Good luck to you!

[greatjohn in reply to FCoffey]

Thanks so much. I am going to approach him with this logic if the already ordered scans look good.

J

[j-o-h-n]

You sure you're not holding that graph upside down? (Double check)

Happy Eastern Orthodox Easter.

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 04/28/2019 4:26 PM DST

[Kaliber in reply to j-o-h-n]

well .............. " It's like my PSA has helium in it. Nothing can hold it back...LOL. " ... then I'd probably smell my armpits and see if my voice sounded funny !!! makes sense .... right ???

[j-o-h-n]

Miscued message from Kaliber to me meant for you GT. Forwarding Fee - no charge (this time).

well .............. " It's like my PSA has helium in it. Nothing can hold it back...LOL. " ... then I'd probably smell my armpits and see if my voice sounded funny !!! makes sense .... right ???

Happy Eastern Orthodox Easter.

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 04/28/2019 7:04 PM DST

[Kaliber in reply to j-o-h-n]

yaay ahahaah a y a ........ ok . LUPRON FOOOOOOOOOOOOOOG .......

[j-o-h-n in reply to Kaliber]

And me it's LUPRON acrid smoke....🤢

Happy Eastern Orthodox Easter.

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 04/28/2019 7:47 PM DST

[Kaliber in reply to j-o-h-n]

ya ahaya ahay aya

[Patrick-Turner]

If only my Psa was as low as yours. It seems your Psa doubled from 1 to 2 over 8 months from 1 Sept 2018 to recently, nearly May 20, but as time goes by the doubling time will shorten, so you can't be sure what it will be in 4 years time, let alone 10 years. I had Psa well above what it is for any man who is never going to get Pca, and this is usually not more than 0.7 at 40 and 1.0 at 60, and my cousin of 74 has about 1.2, and no sign of Pca, but last time I saw him he took forever to have a pee, and I suggested a drug to ease that, Tamulosin and he's reluctant to discuss such things with anyone. So he probably has a swollen PG, but no Pca, yet. I did not know it was highly likely I'd get Pca until I saw so many around me go down with it and I had yearly Psa checks after age 50 which were all basically ignored until Psa went up to 5. Normal Psa was said to ne a range of 0.55 to 55.5, total bullshit, because too many men like me got diagnosed too late. At 62, in 2009, I had a biopsy that gave Gleason 9, 9 positive samples, aggressive, young man's type cells and a robotic RP was booked but I had to wait. I then had a kidney ureter become blocked, and needed a series of temporary uretic stents. Doctor changed to open RP to see the ureter problem plus remove PG, but there was too much cancer outside the PG capsule so they could not see what they were doing, so no RP. Spread to many places had probably occurred. But more biopsies showed no spread, so mets would have been microscopic. Psa was 8.8 after the 4 months wait for surgery.

ADT got Psa down to about 2 before 70Gy of EBRT 8 months after the attempted RP, and then I had a Psa nadir at 0.08, after 2 years of ADT. But then I had a pause of ADT, and in 6 months Psa was back to 8, so I restarted it, and Psa went to 0.2, and remained below 5 until it finally failed in 2016 after 6 years suppression, then I had more IMRT to PG, added Cosadex, ( bicalutamide ) and Psa dropped to nadir of 0.4, and I had both knees replaced. But then it rose again in 2017 so I quit the Cosadex and began Zytiga that gave 8 months Psa suppression, then that failed and before I began chemo last year Psa was 12.

It moved to a highest point yet of 50 after 4 chemos, then I began Lu177, and its now 4.5, but also after being Xtandi, ( enzalutamide ) for a month now.

I have a 4th Lu177 shot next Friday, and not sure what comes next, and I cannot predict if the enzalutamide will work to keep what I have suppressed, or whether I may need more Lu177, or whether anything at all might work. But there is probably time to have DNA analysed to examine for brca2, maybe get PARP inhibitors, but soon my treatment will become experimental, and likely to fail. So my Psa does not have helium in it to make it rise like a balloon, but is propelled up by a mighty lifting jack and there is only so much the docs can do to disable the jack operation, or weight it down so it can't lift.

So, meanwhile, and now at nearly 72, life goes on and I managed 42km on bike yesterday and was fast for first 25km. But then I went slow on a couple of hills I know well, 8kph instead of the 12kph I was doing only 12 months back, so there do seem to be lasting side effects of chemo, and maybe enzalutamide

is giving me fatigue, which is not making me drowsy, but which affects physical fitness and strength. Hip was fine after the ride, except for some slight dull pain this am before I got up to face yet another day of living.

But I did need to know if and how I was affected by treatments so far.

I have read stories of men having Psa rising from less than 0.1 to 2,000 as successive treatments are tried, several times, and one had a website about his story, then suddenly the website vanished, and I guess I know what happened. Notice how there are so few men posting here about how they were cured?

So be prepared to have a lot more happen with your Pca, but meanwhile don't forget to keep living and if you have supportive ppl around you then be kind as possible.

I'll not cycle today, but maybe ride on Tuesday, then travel to Sydney on Thursday for Lu177 on Friday, return Saturday, then wait and see, but also book other doctors and tests for the future after Lu177.

Its not over yet for me.

Patrick Turner.

[greatjohn in reply to Patrick-Turner]

Patrick...

as I like to say "it's not over until the fat lady sings"...

that and "I'm going to live 'till I die". Sounds like you're being quite the busy guy.

You did mention almost 6 years of suppression. That's what I keep hoping for.. So far...I've had 2 months of "suppression" before something happens...I'd like a 4 or 5 year break doing "only" Lupron ....or even Lupron and Xtandi...but, alas, it's looking like the Xtandi is reaching its end game in terms of usefulness...after just 8 months. A year ago(in February)..After Chemo and great results from it... my doctor and a second opinion at a big cancer hospital in Tampa (Moffit Center)...BOTH said I should have 5 years with no big issues...to coast. That lasted 2 months. Those 2 months of having a "break" from feeling like the grim reaper guy was standing over my shoulder were GREAT.

Still doing a lot and having a lot of fun! Right now my partner and I are planning a 5 week August/September driving/touring by bus/train/flying/boating adventure up to the north U.S. and across through the National Parks and ending up in Sacramento.

I'm trying everything I can to have more energy. The BIRM really seemed to help..but I find I'm getting more "tired" lately again. The gym today was a push...but I pushed and afterwards did feel much better. (I just had Lupron and Xgeva on Friday and usually I'm pretty low-energy for the first week after)

Let's keep on keeping on!

gJohn

[Patrick-Turner in reply to greatjohn]

I knew a guy who used to post here who had RP after a low Psa , but Pca spread locally, so he has IMRT then that gave months, then ADT worked for maybe 4 months, then 10 chemo shots had Psa reduce from 40 to 2, then it slowly rose, and they tried Enzalutamide, and that slowed the rise, then he waited while DNA tests were done and he was Brca2 positive but PARP inhibitors made Psa shoot up to 400. all this was in 3 years then Lu177 was booked but new mets were found in his liver which could not be seen in PsMa scan so Lu177 would not help him, so they tried more severe chemo and he does not post here or answer his phone, and I'd say he died, at under 60, about 3 months ago leaving beautiful wife and two nice kids. This the kind of horror story that happens to some ppl. His cancer probably mutated rapidly, and whatever escaped being removed by surgery just charged ahead and nothing could treat it. There is a percentage of cases where the Pca quickly becomes resistant to any hormone stopping or blocking, and maybe to radiation, and as it does so it sends off mets all over the body where the killer version of Pca turns up in organs or brain etc.

I thought this could happen to me, but not yet, and Lu177 alone had Psa reduced to 5 then I began enzalutamide, it rose to 5.6, then enzalutamide kicked in and now its about 4.5 2 weeks later, so I never know when the cancer "takes off" and suddenly overwhelms any medical interventions which if applied as fast as possible, just can't work as fast at the cancer grows, and you can see that speed wins. I spent years feeling very well, cycling up to 12,000km a year, and despite chemical castration the guys in a cycle group had trouble keeping up, and even in late 2017 I was very quick for my age, but then side effects of abiraterone kicked in, so I could not stay with the group in high summer temps, but I managed 10,000km a year, with much beginning at 6am. That's about over, so I fix things in my shed, sedentary work. And today the effect of enzalutamide was a bit of nausea and just not feeing so well, but I'll ride tomorrow a bit, see what happens. Sore hip I had has now been OK during day.

That trip in August sounds great, I hope you are well for it, its 4 months away and anything can happen.

I always feel good after a plate of green vegetables.

So it look like I might survive 10 years after diagnosis. This the 10th year. After that, Hoo Noze.

Patrick Turner.

[boseley]

How did you add the graph please. I am at PSA 446 so a low PSA would be most welcome.

[greatjohn in reply to boseley]

the online site where I get test results has a program that if you just go to PSA and click on "graph of past results" ....it give it to you.

if you get your records online...I'm pretty sure you should have it available also.

John

[Grumpyswife]

Hi John, My husband (also John) started Xtandi on 2/3/18 and his PSA has slightly risen on the last two tests. It is very upsetting to me as my John is losing so much weight. We are planning the next move. The doc is willing to try Zytiga/Prednisone but said it usually doesn’t work after failing Xtandi. Easy to try though. He also suggested chemo to get qualified for Lutetium trials.

Since you’ve already tried chemo you could qualify for a Lutetium trial and get the PSMA scan which is better.

This is messing up our summer travel plans for sure.

[greatjohn in reply to Grumpyswife]

Hi John's Wife, (and John)

I must say this "Cancer" thing...messes up ALL my plans ...LOL. Gotta laugh (or cry)...we're hoping to coast through the summer on Xtandi and Lupron and Xgeva...so I'm going ahead with planning and paying for what needs to be paid ahead...and hoping for the best. With the tour we will be doing for part of the trip by motor coach..through Gate1....we will probably buy their insurance. All they require is that the doctor say you're good to go (at the time of purchase of insurance)...that way if something happens...the doctor can say so and you get refunded. It's only about 4,000 of the cost of the trip...and about 1/3 of what we have planned..but that will help. I've decided to be optimistic and hope for good things!

hope you & John have a GREAT summer!

John

p.s. I love that name "John"...we just this morning met someone working at Costco with it. He was in his 20's or 30's...and I told him...it used to be so common...it's now becoming rare. I used to hear "John" called out...and didn't even look....I assumed it was for another person!