Lot of discussion on taking holidays. Started mine one month ago and I’m starting to feel alive again. Stopped Zytiga and lupron after 18 months. Had 39 rounds of radiation. Not able to remove the damn thing.
I’m wondering since I still have a prostate when my psa rises when will it begin to matter. After one month my psa is .04. It’s been around .03/.04/.05 at my home town doctor. At the cancer center they only do .0. Highest mine ever got to was 4.21. Tumor out of the prostate. I never made much psa.
Adjuvant means it was just an added 18-month cycle of ADT to help the radiation do its work. The cycle was never intended to extend beyond the planned timeframe. From your description, you are not metastatic, you are stage T4. You have to wait to see if the radiation+ADT got it all.
When men on this site say they are getting an ADT vacation, the plan is to be on ADT for the rest of their lives, with a few breaks. This is because they have distant metastases (stage M1).
I can live with that either way. I want to understand with my serious PC and a psa of 4.21 at my worst what number do you chose to start back. My concern is it goes metastatic while I’m waiting for a number in my case that is too high. Doc says it will be caught in time. I like a lot more information than I’m getting.
I flew out to LA and talked to a dr Lam with pcri and he suggested at .5 to go back out there and get a baseline psma pet scan. Not sure if MD has one. It’s a long drive from Kansas and I’m not getting on any plane, boat or elevator until this virus is beat down. I can drive to Texas.
Dr Lam is not a radiation oncologist, he's a medical oncologist. This means he does not treat patients undergoing radiation to cure their cancer. But that does explain how you were able to get abiraterone as adjuvant therapy.
Dr Corn is my MO at MD Anderson. Dr Shaw is my RO. Corn started the Zytiga to shrink the tumor 8 months prior to radiation. That ended April 18 2019. Finished 19 months of adt and he decided I’d had enough. Met Dr Lam at a patient conference and made an appointment to discuss psma scan.
Brings me back to my concern that it starts growing while I’m not taking drugs because of my low psa numbers at diagnosis. 4.21. For me 2.0 is a lot.
Well, 2.0 is the level experts set for biochemical recurrence after radiation. You are talking to the wrong kinds of doctor. You should only be talking to an RO.
You have a lot more experience than me obviously, but the way it works at md Anderson is you go through radiation then the RO hands you over to your MO. I would think that treatment would be generalized in the center. I’m going to ask my RO today in an email if he agrees with the MO. My local MO wanted me on the lupron for the full two years but agreed stopping the Zytiga.
I’ll stay off till my psa hits .5 like Dr Lam said, have the psma and go back on lupron. It’s all about how aggressive my particular disease is at the low psa amount. I posted this to find others that had similar low psa and stopped treatment the same as I’m being told too. I know nothing is set in stone.
I think you and I disagree about your current diagnosis. You are thinking about your cancer as if you have distant metastases (in which case the radiation could not possibly be curative). That seems unwarranted based on what you have written. But perhaps you know something that you haven't specified?
I am in a very similar situation with 60% of what I believe to be a healthy prostate after focal cryo-procedure. My “vacation“ began about nine months ago after 21 months of Zytega and Lupron. Unfortunately if you have a prostate producing PSA, You like I , will need additional tools to determine if your disease is progressing. Based upon what my oncologist has told me and what I’ve learned here, the best supplemental tool is a PSMA test. Unfortunately they cost about $2800 although it is anticipated to be approved soon by the FDA and soon there after your insurance company. I did one at the beginning of my vacation for a baseline and another one recently after my PSA reached 2.0. Fortunately it showed no changes from my baseline. Interestingly my next PSA test was down to 1.4 although I am on no treatment other than MetForman and stopped eating all meats and chicken and most dairy. I will probably do another PSMA test within the next six months or sooner if my PSA starts to rise again substantially.
I believe my cancer will be roaring back at even 1. I’ll do the psma scan as early as they will possibly work. However I’m not kidding myself that I don’t know where it is and that it is alive now. The doc just thinks I needed a break. I agreed.
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If you think it will rush back , why then a vacation? Risky isn’t it ? I’m castrated I’ve got 3 t so I do understand wanting t . Just don’t think it’s in the cards por moi.
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Whimsy I really don’t know but the fact that the cancer has invaded the wall of my rectum makes me think it’s a problem coming my way soon. Then again maybe the radiation got it. All we do is wait and see.
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If I were you I’d get right back on adt . You’ve got to pc put down and keep it down . Worry about a vacation after years bring clear. Good luck Carlo . It’s one hell of trap that we’re caught in .
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I’m thinking about it.
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Don’t hesitate . Its your life brother. I’m not trying to scare you . I’m sure that youve already seen APC enough . Personally I chose adt over APC ..
Up against the rectum. Involved is how they put it. Yes they have said they could remove everything. I say metastatic but they don’t use the word. Anyway I’m not willing to do that. Yet. That is the reason I want a plan to restart adt. The low amount of psa I had with the amount of disease worries me about being grouped with everyone else.
My PSA was 1.18 and I was found to have Gleason 8. I had a robotic prostatectomy but the surgeon was not careful and have urinary incontinence, cut both nerves and tumor came back in couple of years. If anyone wants to know the doctor or facility, email me. In retrospect, I would recommend doing an open prostatectomy, be first on schedule and hope they still don't ding the nerves and get it all out. Also, I would have after a protatectomy, radiation therapy in the prostate bed INCLUDING the inguinal nodes!
FYI, I am in a somewhat similar situation. I had external beam radiation therapy (Nov. and Dec. 2012) and was on ADT (Lupron and Casodex) for 27 months. The treatments drove my PSA down to undetectable (< 0.1). In October 2014, with my PSA still undetectable, I stopped all meds. Slowly over about two years my PSA rose to 0.2 and leveled off there - it remains at that level today.
Through the time I was on the drugs mine was .03 to .05. I expect it to move as soon as the drugs clear my system. Stopped Zytiga jan27 and lupron was done feb 6.
The last six months have kicked my ass. Doctor sat down with me and said we will catch it if it moves. I can say if I feel much better they will have to beat me to restart it. One month off and I’m feeling a lot more like my old self. No perfect but better. I think stopping the Zytiga made the biggest difference. I’m sure I’ll be back on it soon.
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I’ve had my ass kicked now by adt for five years. But in my opinion and my drs it’s fove years of life that I wouldn’t have had with out adt .
I completely understand your concern. I think those of us with a relatively low PSA and high load of disease do have reason to be concerned. My PSA only maxed out to 3.86 even though I was 4+3. Not crazy high Gleason, but still pretty low PSA.
Do you still have your prostate? I think if they let it go to .5 I’ll try to get a psma scan. I really don’t trust they know what’s going on even with that low of a number. I had a nodule at a psa of 1 they said was nothing after the biopsy. I now know they missed it. Next one too late was 4.21 with 4+4.
I do not, but either way it is certainly concerning. I totally agree with you. I think they lump everyone in a big bag and treat everyone the same. This should not be. Hopefully very soon it will be a standard of care to look at the genetics of each individuals disease to adequately determine what the treatment should be. Right now it feel like we are shooting in the dark. Some men are over treated and some are under treated.
Not all cases are comparable, but I'll throw some numbers at you.
On an ADT vacation (hoping it is permanent) since Oct 2018.
Total ADT time was 16 months.
G9, node positive with PSA > 300 at Dx (staged T3B) in May 2017.
Today - PSA is 0.7 with 'T' in the low/normal range.
Age 68 - overall health is pretty good..
My oncologist and GP both watch and wait with me - uncertain about my progression but there is 'no sign of a major cancer event' - I guess that means that I MIGHT be in remission.
The holiday was/is worth it because I feel much better than when I was on ADT - which drove me nutz!
Hopefully, you're still 'in the game' ....
I use the '2.0' as the number to watch for - after radiation and ADT treatment.
Not true Nal. They couldn’t take mine out either .. no way Jose!
You should have been there buddy!
Surely I jest .
Bouncing from 40s 50s and 60s in the days. Really nice but windy. Lows still 20s and 30s. Should hit 40s for lows soon. Love this time of year. You are in Florida? Have a buddy there south of Daytona that laughs at me all winter. Can’t take the summer heat myself. May try the snowbird thing next winter.
We are receiving needed gentle warm rains now. No more snow of freezing temps . Unless a fluke?..We have some flowers sprouting . It was 85 Saturday in Phoenix below us . 64 here on that day and pleasant. Our first spring here . It’s nice .
Thanks 🙏 Shalom !
Yep 2 is normal. But mine was only 4.21 just before my diagnosis of Gleason 8 tumor out of the prostate. So my thinking is it was cancerous at way less than 2. Have to wait and see.
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