So the beast has returned - In summary, after a 2 year ADT vaca, my PSA started to climb so i was tracking it monthly. I also got to Mayo and they did a PSMA/CAT in october (PSA=0.2)- that they "said" was clean. In March PSA went to 1.5 so we did another scan at the end of April- and I have two mets - one on T9 and the other in my brain - in the back.
So I'm in a whirlwind of Dr appts - immediately started Casodex followed by Eligard several days later - also some steriods to reduce the inflamation around the brain met.
After MRIs - we have decided to do surgery on the brain met, followed by radiation - scheduled for May 26. We will just radiate the T9 met and i go in for the simulation today and will get two treatments prior to surgery (the brain radiation will happen 5 days after surgery).
Just so happy that I got away from my Uro and got established at Mayo - I am impressed with the team.
The T9 met doesn't concern me - I know what to expect there - but the brain thing is scary - esp down the road if there is reoccurrence because i understand that the blood brain barrier can limit the effectiveness of some drugs like chemo.
Since they are removing the met for testing - does it make sense to do genetic testing or ?? to get a start on potential immunotherapies or ??.
as a side note - when we look back at the October scan, there were clear indications that the met was there. A topic for another day
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PabloK
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Sorry to learn of these developments , but at least your team are on to it and have an attack strategy in place and ready to go. Having a medical team that you have confidence in is one less worry. Best Wishes
Sorry to hear but just another indication we are on a similar track. I am just ahead of you a few months. My highest met was C1,C2 which was knocking at the door. Sounds like you team is going after ablative therapy which my RO chose not to do. He said it was all or nothing and one of my LN was too close to my esophagus. So if they get all of yours you may have a nice long remission and maybe another vacation if you choose. Not as likley for me. Once the whirlwind slowed it seemed to hit me all at once and restarting ADT had me in a dark space for a period of time. If that happens to you just know that mine passed.
Best of luck on your moving forward and remember despite where these mets are you have a lot of time and should have it under control again soon in my opinion.
Let us know how you do after the treatments please.
I'm about 2 weeks in on Eligard and it is just starting to hit me - hot flashes/exhaustion. I would like to exercise more to see if that helps but the docs want to make sure i play it safe until my surgery.
I know it will get better - its just going to take some time.
I would listen to the Dr for sure. Have they discussed replacing Casodex with something stronger?Exercise helps me a bunch both physically and mentally and I am hitting it hard again. I certainly had the thought of just because I can exercise should I? My RO said I should do whatever I want . So hopefully once you get past the surgery you can start exercising again.
you are correct - i'm going to go back to the gym. I was a 5 day per week guy and it was part of who i am. I can do some treadmill/elliptical and light weights - The dr just cautioned to do in moderation. With all the changes and dr appt, i got off track - thanks for the encouragement.
I just went off casodex - i was using it for lupron flair control (got the shot two weeks ago). I meet with my MO on June 2 to discuss and will either add zytiga or maybe xtandi.
Yes, cranium metastases are far more common, and can cause SEs when they grow too big. My friend had a met in his eye orbit that was impacting his vision.
i'm having minor side effects - mostly loss of some dexterity in my right hand and some slurred speach - they think that i have a good chance of minimizing it after surgery and rehab.
the tumor is about 2cm so i hope that is sufficient. And although you can't be sure, it did light up with the PSMA - and the symptoms increased with increasing PSA levels - so if it walks like duck.....
I guess the good news is that this is the only thing they found on the MRIs (other than that, Mrs lincoln, how was the show).
actually 2 cm by 1.7 cm - so a big marble - and it was from a contrast MRI. there was also some swelling so they had me on steriods to reduce that.
It actually was there in October - they just didn't catch it - comparing the two scans, its pretty obvious that something was happening so my theory is that this was the cause of my rising PSA for the last year or so - but the lastest PSA spike was from my T9 met that was not there 6 months ago.....and my conspiracy theories really don't matter at this point.
Yep, feels like the more they look the more they find and PET/CT is new so they are still catching up, maybe that has something to do with it. In the end just good they found it now.
I'm 71 now - and i was happy to get a little T back - i was surviving the ADT but the moobs, stomach, stamina, and the atrophy of my nether regions were difficult. And it was during covid so i really wasn't missing much.
Also the emotional thing went away - besides crying at every commercial, my grandson found he could get me laughing uncontrollably and weaponized it.
It took about 9 months for it to come back - and i remember the exact time - we were in a sidewalk cafe in Copenhagen and i noticed an attractive women walk by and thought hmmmm.
For what it's worth, after RALP, EBT & Lupron for 2.5 yrs. I took a Lupron holiday for 1.5 years. With my T in the 200's the PCa came back only on the T-11 and PSA of 0.4. Was diagnosed with Oligometastatic Disease & had Cyberknife on the T-11. Within 4 months & T of 331 all hell broke loose & PSA shot to 7.3 with innumerable skeletal lesions. Went back on Lupron (which should have never gone off of in retrospect) and Erleada. Erleada only lasted 6 months & instead of going to Chemo, MO got me into the Eclipse trial & after 2 infusions of Lu 177, PSA back down to 0.3 (from 2.0).
So, I have learned we cannot be "too aggressive" with this Beast! Best of Luck!
amen to that. as much as i don't like ADT - its better than the alternative. And there is a lot to be said for just buying time until better treatment options develop - i go back to when i was first dx and PSMA/PET were not available and now you can get one on any street corner.
My MO said there is a scan with a copper tracer in it that they are working on and it might even be a form of treatment, also. So, we just have to hang in there!
well, it wasn't really planned as intermittent - on initial dx, they did not find any bone mets so after radiation and 2 years of lupron and zytiga, my PSA had been ND for almost two years - so my URO was claiming cure - so it was hopefully done. Then reality set in and here i am.
But before my last scan, my MO was talking about a year on ADT, then go off and watch - and when my PSA went back up to the ~2.0 region, do another scan and go back on ADT with maybe radiation to any detected mets.
I now wish of course that i had not gone on vacation - but at the time, I was hoping to shut the door on the beast and go about my life. No looking back tho
Glad you are jumping on these findings aggressively and hopefully definitively. Sounds like you are with a great and committed team. Best of luck along with that too. Another “Pablo”
I agree with the sentiments of Mateo Beach . Gives me pause when I think of taking a vacation in Dec. as our cases are very similar with a 2 year lag. Will follow you with interest , fight on Brother my thoughts are with you.
I am also a patient at Mayo. They far exceed an of the major institutions at which I have been a patient. Dr. Kwon is superb.
Sorry to see your report. Agree the brain met is the biggest concern. Wish you all the best.
I am just finishing up on Taxtere. Have another 19 months to go on Leupron and ADT before trying a "holiday". After reading your post, I will be sure to be very aggressive as soon as PSA starts to climb
So Pablo we shall have to change your name to "MORTON" cause when it rains etc. I hope all goes well with all you have to endure. In and out of MRI's and since you fibbed on your taxes a visit from the FBI and IRS and SSI etc. Keep in touch and Keep on Keeping. Typing with my fingers crossed.............
My 83 y.o. mom had a small brain tumor (temple area). Caused a small stroke. (No damage). Docs removed it through a small hole, drain tube for 3 days, some radiation a few weeks later. Fully recovered, back to her normal self. Advances in medical make alot more possible. Stay positive, informed. Best of luck, keep fighting.
thanks - there is one case i found in the literature and that had a positive outcome. And the doctors are optimistic - nonetheless, when its your head they are opening up, its kinda scary.
thanks for your support - not sure how I would have handled this without this forum
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