Hi everyone. I'm hoping to tap back into the wisdom of this crowd. First DX in 2009 with Gleason 3+4/PSA 3.7. Had HDR Brachy and Low-Dose EBRT with Casodex. All good (nadir of 0.11) for 6 years, then BCR. I started Prostap injections \= \\bicalutamide 50 mg in Jan 2020 when PSA was >5. A sudden drop resulted in a PSA 3 months ago of 0.71. This time I was expecting the pattern of 30-40% drop to continue, and was alarmed to see that it had crept up marginally (up to 0.75). Does this indicate that ADT has stopped working (I know, I'd need a further test to see if the trend is upwards)? Or could this be my personal PSA nadir, and it might just bottom-out?
If it's the former, what might be my options? Enzalutamide, instead of Bicalutamide? My last scan (almost a year ago) showed seminal vesicle involvement, but no spread, so is salvage treatment impossible, even at this stage?
I've also had genetic testing to see if I might have mutant BRCA 1/2 genes but still awaiting results due to Covid.
Any suggestions gratefully received.
Written by
CrocodileShoes
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Firstly, PSA 0.75 is not something that should trigger a drastic change in treatment which has been working beautifully for you for so many years. And one or two readings does not make a trend. Repeat PSA 3 times more (every 4 to 6 weeks) to get accurate information.
I will increase dose of bicalutamide from 50 mg a day to 100 mg a day. Closely monitor PSA preferably every 3 to 4 weeks for sometime. If this does not work...I will stop Bicalutamide completely and monitor PSA to see if I am that lucky guy whose PSA goes down for long time after sopping bicalutamide. It is called Bicalutamide withdrawal syndrome. I not, then, of course , we will explore heavy duty stuff such as Abiraterone, Enzalutamide etc.
In world of prostate cancer, nothing changes quickly overnight. So going slow is possible. However, I will check PSA and bone specific Alkaline phosphatase every 1 month for next 3 months to see if it is real upswing or a false alarm.
I did it three years ago, no side effects. They zapped three lymph node mets as well while being at it. Placing the fiducials is difficult, you better get into an excellenct clinic for that.
You should have an Axium PET scan/CT to find the site(s) of recurrence. If they are in the seminal vesicles and/or pelvic lymph nodes, salvage radiotherapy can still be curative potentially. If it has spread to bones or beyond the pelvic lymph nodes, you should be on ADT with a GnRH agonist (like Lupron) or antagonist (like Firmagon) -not bicalutamide. Bicalutamide becomes a food source for the cancer ("bicalutamide withdrawal syndrome") and should be stopped immediately when PSA rises while on it. You will probably find that PSA falls when you stop it.
I was diagnosed with a Gleason 9 in 2009, age 62, Psa 6. and 9 / 9 positive Pca samples of biopsy, so I had what was said to be a horrid diagnosis, with aggressive cell types of "young man's Pca". I'd had regular Psa tests for previous 10 years, and I expected to get Pca because I watched so many others die of cancer, including a father and sister both ages 60.
My other older sister of 76 is in good health but she survived breast cancer.
Cosadex then Zytiga added to Lucrin ADT gave me suppressed Psa for 6 moths and 8 months, then I had chemo which didn't work, and I am now having a second round of Lu177, and so far so good and my Psa graph is not yet up-dated but went to 30, then was 8.7 before 5th Lu177 shot.
All the drugs added on to ADT to get more Psa suppression al lend up not working any more. Its thought that having chemo re-sensitizes Pca to get a "long time" of further Psa suppression but I think I only got from April 2019 to June 2020.
PsMa scans last July showed no soft tissue mets in lymph nodes or organs, and I only seemed to have bone mets, able to regrow, and some were quite zapped in 2019, and lesions had healed up
So not a bad outcome.
I have no idea if I have hundreds of microscopic mets or not, and not yet able to be seen in PsMa scans. I have had 8 x PsMa Ga68 PET+CT scans so far.
In July this year I also had FDG PET scan which gave completely negative result.
My onco thought id a good time to get blood DNA checked for Brca1+2 genes, so I had my blood DNA analyzed, for these 2 gene defects plus another 10 genes thought to make it more likely that I suffer getting Pca. So at present, there is no genetic evidence indicating why I got Pca. So it may be unlikely I ever be given Olaparib, a PARP inhibitor. If I did get, it, it would be all trial and error, and maybe it works, maybe it don't, and it does work, then like all other things it may not work for ever.
I had 6th Lu177 shot on 2 October, nearly 2 weeks ago am now back cycling a regular 200km a week. I did ease off for week after last PsMa shot, and I'd been taking Veyonda for 10 days which I suspect gave me high blood pressure, a YUK taste in mouth, and general YUK feeling. It also rained everyday for week after 2 October, so no rides for that week. I have good QOL and no pains, and I just came home after cycling 66km, no problems.
Here in Australia, first add on drug to ADT when it fails is Cosadex, and then when that fails Zytiga is next, and when that fails we cannot get Xtandi because trials show a worth while suppression of Psa is unlikely, so Docetaxel chemo is next therapy. When that also fails like everything else, Cabazataxel could be tried then Carboplatin, and by then the side effects of chemo are horrendous. But my onco agreed with me when we saw my Docetaxel fail after 4 shots. Psa just went up, nver down, and more mets were seen, although a few were thought to reduce. That gave me the opportunity to get Lu177, which had had far less side effects and more tolerable side effects, judging by my average cycling speed and brightness of mental condition.
All of have a different story to tell, but you and I were both diagnosed in 2009, so at least I can ask which one of us will die first?
We have survived 11 years after diagnosis, not too bad a result.
But one never sits on a prostate gland. Not even on a bicycle because discomfort would be painful. The pelvis is shaped so that there are two downward pointing rounded protusions aka "sit bones" left and right and slightly behind arse hole. When seated on anything the pelvis sit bones transmit weight of upper body to seat, bath, bench, bicycle saddle, horse saddle, motorcycle seat, car seat, truck seat etc. There is not much thickness of skin or muscle covering the sit bones, and one gets used to sitting on a bicycle saddle if it has been well designed. The only type of bike saddle I have ever liked is a Brooke leather saddle because I have been able to remain pain free even after 100km, which takes me over 4 hours to ride, at age 73, and after every possible Pca treatment has been done to weaken and prematurely age me.
I was once fully able to cycle 300km between 1am am to 4pm at age 42, without getting a sore arse. I do not believe that bicycle riding has any bad effect on any anatomy associated with PG.
Pca is due to mistakes that occur in DNA of PG tissues. In layman's terms, I have been sitting on many types of seats , and I know my PG to be
Puff The Magic Prostate Grenade, and of course ever since my PG was found to deserve this imfamous name, Puff has been slowly exploding. Doctors have limited explosion damage quite well, with latest agent employed being Ms Lutetia who has been sent into body to visit the Pca parties going on. She knocks on the door, and with a smile asks to come in, and Pca can't resister her charms, notably nice big breasts. Well, once inside the party scene she whips out a pair of Beta particle guns concealed in her bra, then starts shooting every darn Pca cell she meets. She's able to clone herself to go to many Pca parties, but eventually after a week or two, she runs out of amo and asks Mr and Mrs Kidney to rescue her, and so they oblige, and tell the man to take a piss, so Ms Lutetia is sent down the toilet, her job is done, until more cloned versions of her are sent in to do more.
I don't race on bicycles. I used to, between age 37 and 43, as a "veteran". Longest races I did were 135km which took me about 4.3 hours and all with no effect on PG that would have been more than any man running an ultra marathon and not sitting at any time.
I have cycled from home to get most of my Psa tests and not found cycling to change results of tests at all.
The health benefits of cycling 200km a week are huge, and life saving and life prolonging, and not damaging to the body unless you fall off the bike or get run over by a bus.
In my city of Canberra in Australia, such risk of death or serious injury are extremely low compared to big crowded cities with roads clogged with motor traffic and no dedicated off road sealed cycle paths we have here.
If you were to interview all the older cyclists who raced a lot more than I have, and ridden far further for far longer than I have, I doubt you would find rates of Pca would be not higher than for the general population who are so lazy and allergic to get up from their chairs and spend hours and hours being very busy with heart rate doubled, breathing rate quadrupled, and working very hard every time they use human power to get up over a hill. We have lots of hills here, so less than 4% of ppl cycle to work, mainly young men, but in Holland or Demark, things are slightly different, and they'd have better stats on cycling and PG health than I can presently refer you to.
Today I did 66km, next cycle ride Friday, but tomorrow I might have first swim in pool for warm season between October and May.
Now what are you going to do tomorrow to maintain some fitness?
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