It’s been over a year since I stopped treatment and my testosterone is steady at 69. Made it to 99 one month last December. Had 40 rounds of radiation and hormone therapy including zytiga and Eli guard for 18 months. I think I killed my ability to make it on my own. Doctor agrees it’s not coming back.
I know I’m not alone. How is everyone in my same boat dealing with the fatigue?
This is called "free Eligard for entire life" Fully 7% men never regain normal testosterone ever again. I hope you are not going to be in that 7% category. Mine was 705 pretreatment, After stopping treatment (lupron+Zytiga) about 11 months ago ,now T is back up to 540.
Never looked at it like that. Been nice if they would have killed my T before I started all the drugs. Would have saved me 500 a month.
How long were you taking Lupron plus Zytiga?
Zytiga /lupron started 8 months before radiation and early on it was supposed to be 2 years. At 18 months they decided that was as good as two years and stopped all the drugs. So full 18 months for both.
I'm 14 months into a 18 month program. This is my 13 or 14th year dancing with the beast. Only positive thoughts sent your way.
I was castrated 12 years ago. I don’t ever want testosterone to return to feed my cancer. No fatigue worth mentioning. But still alive and that’s what matters.
Hec yah my danish friend! I did the orch 6 yrs ago myself . We choose life over T. Keep rocking!
Talk to doctor about hCG and clomid to jump start natural production.
Can’t get either of my oncologist to prescribe it. I have one more endocrinologist I can ask. Was holding out for a late recovery.
I’m in the same boat. Went on ADT vacation about 18 mths ago, and T is hovering around 75. I also had 28 sessions of full pelvic radiation and another 14 on the prostate. My MO is adamant about not supplementing T. The T at 75 is not enough for an erection, but it is sufficient to avoid hot flashes and fatigue. On balance, my QOL is good, and I’m grateful.
The fatigue and stamina are my biggest barriers to QOL. Searching for T level of 150.
Did your T return? Mine after all this time has come up to 260. Hopefully will continue up.
Ive had 3 MO s in 7 yrs and none ever would promote me using t..
Morning TA
After more than one year after stopping all drugs my testosterone jumped from 69 to 131 in 1 month. It has gone up then back down but the highest was 99.
I’m wondering how high the testosterone can go without the testicles working.
Is it possible they are waking up or can T go that high without them working. Yesterday was the day I was to start T supplement as my endocrinologist changed his mind on the clomid. So this rise is all me. Only thing I did different before the blood draw was get a COVID-19 Pfizer first shot the day before.
The testicles are waking up - keep at it.
To everyone. For what it’s worth.
My treatment was 39 rounds of whole pelvic radiation. I had 19 months of zytiga and lupron. My last 6 month lupron shot was August 2019. Stopped zytiga February 2020.
Testosterone started up 4 months later and went from 7 to a high of 99. Dropped back to 60 area until yesterday it jumped to 131. That’s a year of not much movement. I was scheduled to start testosterone that day.
I’m sure you are right. Options I know of are testosterone supplement or Ritalin. I keep going on the Ritalin but no stamina.
I've always felt that in intermittent ADT, say, doctors shoud restore testosterone during the off-phase. Dr. Freedland has said that the IADT off-phase is a continuation of ADT for many.
At the least they should get T above 350 ng/dL, which is the common cut-off for hypogonadism, so as to counter the morbidity of low T. Although, I would prefer 650 ng/dL, to escape the possibility of estrogen dominance.
-Patrick
Similar treatment but 2 added mo’s of Eligard. @ 1 year off the juice, I was still full blown ADT. Then 6 months later >300. Another 6 months (currently) 450+/-. I contemplated Testosterone therapy but decided to wait it out and see what the body would do on its own.... glad I did! Don’t know what my T was pre-ADT but also don’t need any more drugs in my system nor the chance of waking the beast!!!Can’t rush things!!!
Jc
What was your T number at 1 year before it took off?
I was @ 18 through out ADT. Tested after 9 months out I was @ 19. @ a year / 3mo’s later <100. But at that point I could see some side effects diminishing.... confirming I was on my way out of hell!!! Didn’t make it all the way out but, what the hell.... I’m alive!!!
I was @ 3 after radiation and another year of adt. Started adt 8 months before radiation. 4 months after stopping zytiga and lupron/Eliguard it started up and hit 7. Went up monthly. 7/16/30/57/66/88 /99. That’s where it stopped. Started down to the 60s where it has stayed. Last week 69. Maybe I still have a chance with yours taking 15 months to get to 100.
Thanks for the response
My testosterone level doubled when I took Bicalutamide. Maybe that will help.
In this video Dr. Mulhall reports that most patients have no complete recovery of their testosterone level after ADT: player.vimeo.com/video/3378...
I was given Bicalutamide at the beginning to (in their words) “prevent a spike”!!!! Maybe another justification for my firing Doctors!!!Jc
I was given that also to slow the psa count early on. I wasn’t smart enough to look at my testosterone count at that time. I actually never did look at it until it was 3. Didn’t need a test at that time to know.
I just thought you could tell your MO, since you get no Lupron anymore, you would like to continue with Bicalutamide to fight the cancer. The side effect is that it increases the testosterone level, so it may achieve what you want. But do not combine it with Lupron or patches, these lower testosterone.
I did not know that. I’ll check it out.
Surely the radiation would be nowhere near the testes? More likely the LHRH agonist has caused permanent disruption to the production of testosterone, which is not uncommon
For whatever it's worth: 1 mo on Eligard; 9 mos on Lupron. Devastating for me. T dropped to <0.0 but has taken almost 2 yrs to recover (and pretreatment T was nothing to write home about: 240). Hope you have better luck than I did.
EdinBaltimore
I would love 240. I’d take 140.
My situation re T close to yours at the time. 18 months since finishing Lupron and my T remains undetectable. Was 300 before diagnosis. 84 yrs old and no energy or stamina. Would like to try hCG or clomid to bump up T but was advised to wait another year. How has your progress been?
My T is up to 240 last week, 25 months post 19 months Lupron/casodex. I'm 78 years old, had proton for G4+5.
Bob do you remember what it was at 12 months after treatment. Actually I’m at 13 months.
Hello,I am in a similar situation. T dropped to about 85 ng/dl for about 4 years. Lupron, bicalutimide, and radiation. Then in one month dropped to about 11. Stayed that way for about 4 years and I had a miserable QOL. Didn’t do too badly at 85 but the drop to 11 was huge. Oncologist recommended Androgel to get some QOL. Trade off. Be miserable (I didn’t realize it at the time but Dr. Sartor and his team did) and live maybe four years or add T and let the PSA rise. Which is what it is doing. Frightening putting the stuff on every morning knowing that the PSA is rising. My oncologist figured that the testes never tried but the adrenal gland tried for a while and then gave up.
Very difficult decision for sure, but I sure feel better physically, emotionally, and much better brain function.
Good luck with the problem and update us if you are fortunate enough to have an oncologist that will work with you.
Alan
Glad yours comes back. The reason mine doesn’t is what I’m working on. One dr says take T supplement many more say no way. I see mine go to 99 then drop so I’m thinking it may have a way of coming back.
This leads to the other more important question of how does my natural T and the supplement differ in causing reoccurrence of the cancer. Pain in the butt.
There is a growing body of evidence that suggests that replacement T is not dangerous.
Even if there weren't, I would have had TRT in a heartbeat had my T not recovered naturally. There is no way on Earth that I would have gone through the rest of my life feeling like s*** every second of every day.
My T did not come in 2011 after stopping Lupron a year earlier. My MO put me on 4 mg of Androgel twice a week. T last week was 566. It has ranged from 400 to 750 depending on what day I put the gel on compared to the day that I have a blood draw.
Using Androgel was an attempt to jump start testosterone production after suppressing the previous five years plus one year to let recovery happen. T never came back; hence my continual use. The only person who would authorize would be a medical oncologist according to my Pharmacist..
That’s great news
So you make no attempt at controlling it at a lower level? You are in the group that thinks testosterone does not cause reoccurrence? I have looked at everything printed about it and not found one dr except mine that believes or treats patients with that thinking. Guess I better start listening.
Thanks.
My normal testosterone level is about 427 ng/dl. It got up to 1040 ng/dl while I used Bicalutamide. I used Tamoxifen to avoid breast enlargement.
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I'm now castrate resistant - what now?
