I searched but only came up with vacations at two years or so. I had a meeting with my MO today. He is conservative but suggested I could stop the meds. I was complaining of brain fog. He said to stop the Abi for about three weeks to see if there is any improvement and if not, stop Lupron.
My story is 5.5 years on both meds. Five mets to bones in the pelvic area. None to tissue. Gleason 9. PSA at DX of 17. After meds, nadir of <.008 for about a year. Now it is .053 last week. Still very low. He says let PSA go to 5-10 before starting meds again. I'm thinking 5.
I would like to try a vacay. Would love to get input from you who are similar to me and have done the vacay.
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gsun
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On-Off control isn't the best you can do IMO. Instead, try if a Minimum Effective Dose of an ARSI (Anti-Androgen) can keep your PSA at your current levels. Brain fog will go away for sure. Check my thread: "An engineer's Bicalutamide maneuvers" for more information.
I'm afraid I don't have the time nor the training to do what you have done. Also, I probably can't switch form Lupron to Bicludamide as the Lupron is working. I am in Canada.
I am 16 months into my second vacation from Abi/Lupron. I’m feeling great and monitoring PSA (1.6 from .02) and doing periodic PSMA scans (last one all clear). Feel free to private message me for more detail.
The vacation will end soon after the testosterone level has recovered. You can extend this with bicalutamide which has less side effects than Lupron. It does not lower testosterone.
Everyone needs to make decisions that are best for them. I've been at this for 5.5 years too. Personally, I won't ever take a vacation from the meds unless there is scientific data to show that it is a good thing. I just don't want to give the cancer a chance to start growing again.
I don't like the side effects, including brain fog, but I've adapted my lifestyle to accommodate them. My partner has been very good at reminding me about things I forget and stepping in when I am clearly frustrated while trying to problem solve.
Hi Mark, In this new world technology is very frustrating for us old guys taking ADT especially. I started taking Magnesium L- Threonate & the fog is starting to clear.
In my 12 years of on & off ADT or intermitant ADT I found it beter to just stay on it & not let the cancer grow & become more agresive. But I might add it can be controlled with Estradiol gel or the T2 patch which does not come with the nasty side effects.
Personally I would hate to recomend intermittent ADT & maybe be resonsible for somebody having a more agresive cancer just because I said it works for me.
The much valued comments of TA add to the opinion that life long ADT is the safer treatment for this disease.
I take a variety of supplements which I can not recomend here but may be responsible for the masking or reduction of my own disease. But the T2 patch or estradoil gel has been proven even though it is still not available in some countries.
Gsun- I’m sixty years old and coming up on my ten year stage IV anniversary. I’ve been on IADT for almost eight years now. Two of my onks , one of whom considered my vacays unusual, have cited a small study from Germany comparing IADT to traditional ADT. They said the life expectancy of both cohorts was within days, but QoL scores were much higher for IADT.
I’ve been on Lupron, Firmagon, and Zytiga. Am now on Zoladex due to resistance to others. Prior to Provenge in 2019, my breaks might have been for three months and ended when PSA rose to 20-50. Last winter, I had a longer (5 month) break , I think due to benefit of Provenge.
I accept more bone met activity for QoL and no drugs. My T comes right back, which is nice. I am very active, and ski quite aggressively, to the disgust of my docs.
I’m starting to wonder if the breaks might have allowed a longer run of ADT. I was G9 SVI positive Lymph on RP in 2012. Doing better that I had expected.
Best of luck to you. You’re facing a big decision about treatment philosophy. I think you’ll do great!
I stopped lupron after about 12 years. I missed one due to the doctors office being closed for covid. After that I just kept thinking about how the lupron failed and I had to go on Xtandi.I lasted 18 months without lupron till my oncologist said I might have trouble getting things paid for if I don't do it. Well what's a person to do when they lay that out to you? I did go back on and it's been 18 months and PSA still marching up at increasing velocity every six months.
I'm thinking I was pretty much right in determining that ADT failed so why should I take it? My testosterone only made it up to 58. But boy did I feel good for that short while.
Xtandi failing now I guess. I'll see what to do about that in the next visit.
fyi Only! This is not a Recommendation! I went on 3 vacations during my first 5 years of treatment of metPC (dx with 4 Mets and PSA in the 40s at age 54) after having my prostate removed. The first vacation was about 20 months, then 12, then 6 and MO waited for PSA to climb to about 5 or so as I recall. I have no idea if the vacations helped or hurt my overall treatment but I have been back on Lupron and Zytiga now for the last 6 years continuously, although I did have to get my largest tumor radiated 18 months ago when PSA began to climb a little fro below .05 to about .13, which led to the radiation. Recently, my PSA has been at .05 and then .06. Good luck with whatever decision you make.
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