After being mostly asleep for the 18 months of adt I’m off the drugs since Jan 26 this year. Here it is august and my testosterone level is a big 39. I’m pretty low on energy still.
Writing to see if anyone has been prescribed patches for testosterone and did it affect the psa? I’m starting them this week hoping to get at least a hundred or so in the near future.
I was offered them not shoved down my throat and jumped at the chance to wake up.
Any thoughts appreciated.
Gleason 8 t4 tumor attached to rectum. PC in the nerve bundle. 39 rounds of whole pelvic radiation and 19 months of lupron and zytiga. Psa steady at .04 most of the time. My tumor was way outside of the prostate with a maximum psa at biopsy time of 4.21. Lots of cancer no psa.
Testosterone is a really bad idea for you. You have to monitor PSA after your T returns naturally, so you can know if your primary radiation worked or not. Supplementing T will screw up your ability to monitor it. Wait at least a few years before supplementing,
it’s been since Jan 26 that I stopped lupron and zytiga. My last shot of lupron was a 6 month shot August of 2019. I know the drugs aren’t out of my system in feb 2020. My testosterone was 39 august 4 th. I think the doc believes it isn’t coming back and he knows I’m tired of being tired. This is his idea and he believes it to be ok. Ok as long as we monitor it monthly.
The dose is unknown yet unless all patches are the same. I get one patch every other day instead of 1 a day. Plan is to see psa no higher than 1. I’m heading your way for a Psma scan at .5. If you have information on how long it takes to recover naturally I’d like to know. If there is an average for everything I’ve had done to a 69 year old. In 2018 I was working 12 hour days in construction as needed and now I can’t put together 15 minutes. It seems dumb to me too to add what the cancer eats to stay alive.
Suggest you try to kickstart your natural T production with hCG shots and clomid pills.
I have no idea what a PSMA PET could possibly tell you at this point. If there is activity in the prostate, it is only because the cancer cells don't die until they try to reeplicate. They will express PSMA even though they are zombie cells.
That .5 was given to me by dr Lam. I have been wondering if the cancer can metastasize while I’m off the drugs waiting for the psa to move when I had so little psa in the first place. I haven’t run it by Dr Corn. Checking into the HCG shot and clomid pills. You need to put all this stuff in a book or come on my next visit to dr corn.
Lam isn't a radiation oncology specialist, and doesn't understand how radiation kills cancer. A PSA of 0.5 makes sense as a good point to get a PSMA PET after prostatectomy, but it doesn't make sense this soon after RT. No one knows what a local positive finding means. Suggest you wait until you have a biochemical recurrence (nadir+2) if you ever do, before looking for it on a PET scan. (By that time it should be FDA-approved and widely available).
I think but don’t know he may be doing close to the same by limiting my use to half as much as usual to just help my own T level. I have ask for quicker boost. He Pretty much blows me off. I’m sure he has a plan. I’m going to see how it goes for at least a month.
It's very individual, and it takes longer depending on how long you were on ADT. In the following trial where recurrent (non-metastatic and hormone-naive) men got Zytiga+Lupron for 8 months, it took a median of 13 months for their T to recover.
So I’m just beginning at 6 months as I was on them for 19 months. He’s just offering it to me not pushing. I think I’ll do one month and see what happens. I’m taking Ritalin every day even if it’s not very much and have no intention of stopping. It has stopped being effective by 50% since I started taking it. I’m checking today on HCG shot.
Even at age of 84 with no strength or stamina and last T at <2.5, urologist refused request for Clomid and is sticking to a 2 year post ADT waiting period. Had hoped to "kickstart" any natural production I might have with Clomid (though have read it doesn't work as well in the elderly) or hCG before getting into endogenous T if needed some 9 months down the road. Hard to understand uros' position in this?
I don't get it. Clomiphene is off-label, so I could see why insurance wouldn't pay for it, but clomiphene does not have many side effects, so I don't see why a doctor would resist. 2 weeks is enough to see if it works. There is a small risk of blood clots and high triglycerides with continued use, but most of us take aspirin and statins. Same with hCG.
Just a FYI r.e. my "T" replacement experience and NOT TO BE TAKEN as anything other than MY EXPERIMENT
70yo now began PCa detour in life in 2015 with PSA 14+ a Gleason 10 tumor right half some 6/7 spots in left half. Unconventional treatment protocol since my desire was to CONTINUE to LIVE LIFE TO MY MAX from the get-go with minimal impact and if it should hasten my demise - so be it. Wife AND grown kids AGREED.
1st was Castration (my choice) no ADT (urologist's recommendation). endurance cycling, IRONMAN and other Triathlons, 5K to Marathons with longest 33 miles overnight as a WALKER (bone on bone knees).
2nd was Cryoablation not surgery/seeds/chemo/radiation/laser with daily 1700mg Metformin and Avodart now (Dutasteride)
3rd was a 3 drug immuno injection into prostate -experimental as NOT APPROVED
4th and CONTRARY TO ALL PROTOCOL began bi-weekly Cypionate testosterone injections. Following injection "T" is 1600+ and at next injection 600+. Suffered much muscle/endurance loss from castration time to beginning of "T" replacement but recovery with injections is better although muscle strength continues to decline.
NOTE -- I have imposed a "T" holiday of up to 2 weeks with resulting "T" dropping to <30. Low "T" symptoms return as expected once the 200/300 range is entered.
AXUMIN showed 3 spots of GL6/7 return in 2018 with Focal Cryo taking them out. Earlier this year another Axumin plus a 3TmpMRI after a slight rise in PSA with clear results and latest PSA was down.
Will see how life progresses but so far not too bad. Birthday present to myself on July 10th for making 70 was a 141 mile bicycle ride. Be interesting if since the "T" in my system is not of my DNA, maybe roaming PCa cells will continue to pass by and simply say HI.
Do not have the guts to follow your path but I’m living proof of why you are choosing it. I couldn’t peddle to the grocery store if I was starving. Read what I replied to T A. Good luck
Personally, I think it is a splendid idea. Testosterone [T] recovers slowly after 18 months of ADT. If you do not supplement, you will continue to have castrate or hypodonadal T for months. Do you know what your baseline T was? That can be another reason for wanting T patches. And full recovery is often to less than baseline.
The point of an ADT holiday is to incease QoL.
You would on course monitor PSA monthly & stop using the patches if the PSA went wild.
Note that PSA tends to rise as T recovers. One needs steady nerves to wait out the first few months before it settles down.
Do not know my t level before this crap. Good question. I never had a psa or prostate exam until 65 years old. Long story. Anyway as I replied to T A I’m tired of being tired. I am not on a holiday but waiting for the psa to raise its ugly head after treatment. Testosterone has only moved up to 39 since stopping the drugs. Patches starting this week.
CONGRRATS on making it thru treatment, that in itself is a HUGE accomplishment. My 76 yr old husband has also made it thru treatment (18mos Zytiga, Lupron, 10 rounds chemo, 6 rounds Raduim 223). He's been clear for 1.5yrs n also struggles w/low T, the advice you've been given HERE Is SOLID!! When my husband asked his Oncologist about T replacement, Dr responded "if you want to stare the devil in the face I will give you a shot today, or he could wait it out to see how it comes back naturally". Husband chose to wait, it HAS been very rough but we are seeing slow n slight T increase, still not at a level for him to feel close to his old self but he/we keep pushing thru. From the wife of a 2 time survivor... please consider the advice of your fellow WARRIORS here, they have been/are walking in your shoes. Sending prayers n light for you, your strength, your family ♡
My dr. said something like pouring fuel on the fire. They do understand how we feel. It’s just not their decision what we do. We want it all. We want to be cured and back to normal. Or at least I do. Hope the same for your husband. My biggest fear is if I wake up I’ll not go back on the drugs if it reoccurs. Face that when it happens. I had a very smart guy in my radiation group that was 83 going for 100. He told me in making the decisions coming my way to (Always choose life). I think he meant quality life. He told them to keep their adt.
Hi Carlos. Quality of Life is everything. I have been zero T for 10 years. After making sure your thyroid numbers are good I lean on good coffee, cold coke and an absolute will to march on. The no T. is a struggle I give to the Almighty. Good luck.
As it's been almost 7 mos, it's clear that your T isn't recovering, which happens in ~10% of cases.
I'm sure TallAllen's advice is the safest, but I sympathize with your demand for something, whether it's a kickstart or replacement that will bring this phase of your life to a close, even if your only SE is fatigue.
About 8 mos into ADT, I too could hardly move, but I had all the other common SEs, including a pounding, relentless depression. I really wanted to be dead, and thus the conversation I had with my MO went like this: "I'm quitting this shit, and there are no words in the English language that can change my mind. That's because, when you think about it, there is no POSSIBLE justification/rationale for a treatment that makes the patient desperate for a heart attack or a lethal car accident. If this goes the wrong way, which obviously it might, the worst that happens is that I end it with a few dollars worth of fentanyl, which doesn't scare me in the slightest."
Btw, my T recovered and I feel fine now. Terrified that my PSA is creeping up, but fine in all other respects.
I hear you. My only SE is fatigue that I’m aware of. I’m not smart enough to know if I’m depressed. Im hoping this patch will wake up my system. Looking into every chance for motivation and energy. Now it’s just Ritalin that takes me up and down.
"I’m not smart enough to know if I’m depressed." Ha!!
Trust me, you would know. It's like being transformed into a completely different person. You feel as though the chemical has neutralized your entire capacity to feel joy and pleasure, leaving you to wallow in your physical and emotional misery. The good news is that the recovery of T, and, in my case, antidepressants, made me feel like my old self again.
Question is do the drugs pick up your mood in any case. All of us are probably down somewhat. Can’t be happy we’ve got this shit. If it would help My attitude I’d take them.
My experience is that an antidepressant can indeed normalize mood when there are symptoms of depression ( not just sadness) even if caused by low T or ADT. For me just 10 mg of fluoxetine, a low dose, does the trick.
My experience - Baseline T was 880. T dropped to 10 during first fourteen month ADT therapy (Firmagon/Degarelix). T stayed at 10 and did not recover AT ALL until a full 7 months after ADT was out of my system. Then it finally shot up rapidly over next 3 months - 50; 350; 800; and ended up bouncing between 700 and 980 Until settling back at normal range within the next few months. Same pattern for subsequent ADT therapies between ”vacations.”
Have same impatience with fatigue/muscle loss issues you describe, but really glad now I waited it out for my T to recover naturally. Don’t want to be dependent on supplementation for the rest of my life.
T-A’s observations are good. If treatments aren’t curative, we’re in this for the long haul and I hate to see anyone make decisions out of frustration that may ultimately increase the amount and frequency of drug therapies.
I may not be in such bad shape as I thought. I’ve been raising almost 100% a month locally. Once it started moving it went from 3 to 7 to 16 to 30 to 60 at 30 day tests. I go to my oncologist I see every 3 to 6 months and it’s 39. I assumed he was right. Might not be the case. Had it checked again locally and confirmed 58. My doc at MD Anderson said go with the local tests because of the consistency. Going to hold off on the patches for another month. That would put me around 110 to 120 next month. Not hearing too many good things about patches. I guess a couple more months won’t kill me.
After ADT, many patients had normal testosterone levels (>6 nmol/L) until 6 weeks, and testosterone recovery reached 35% at 12 weeks (mean, 11.4 nmol/L), 85% at 18 weeks, and 89% at 24 weeks.
Dec 20, 2017
Factors associated with testosterone recovery after ... - NCBI
Are you thinking there is a difference between natural and the patch testosterone? I’m going to wait at least 1 more month an see if it is going up on it’s own.
Carlo, I’ll be as candid as I can. Unless you are cured, if you stop Lupron, your PSA will rise. If after a year if your T does not rise, it most likely will not. If you are not cured, and start supplemental testosterone, your cancer will grow. Plain facts of this disease. I turned 73 last February.
With that said, after a six month chemotherapy and Hormone therapy trial for metastatic prostate cancer, I stayed on Lupron for six years. I was consistently <0.1 PSA and <5.0 T. My research medical oncologist told me that he believed that I was cured. He convinced me to stop the Lupron injections. A year later, same numbers. Then he convinced me to add 4 mg on Androgel twice a week. PSA stayed undetectable and T rose to a range of 350 to 750 depending on when I applied the gel and did blood work. I was tested every month. And, I very routine scans! Oh, if I stopped the Androgel, my T fell to about 5. Supplemental testosterone has a very, very short half life and clears your body quickly.
So, I stopped Lupron in a February 2010 and added Androgel in January 2011. I have not needed any of the silver bullets taken today as the norm. I am very thankful for my exceptional results. Some say antidotal. It is not even close to the norm. My PSA last week was <0.1 and my T was 530. BTW, I started with 4 mg patches, however, I developed an allergy to the adhesive. So I use the gel.
My friend, this is something that is not to be played around with. Do your monthly blood work without fail. If you PSA rises, take a 3 mo injection of Lupron and stop the supplemental testosterone. One final caveat. From 2003 until 2010, I had 24 nuclear bone scans and soft tissue CT scans. It is the only way to tell if metastatic lesions are growing and or dying to be replaced with new bone growth. I had a follow up pair of scans in 2016. Thus, my guy was on top of my disease...... and rightly so as I was a mere lab rat or guinea pig rolling the dice and had a tremendous outcome.
You asked, I responded. Given your historical numbers, I would not be eager to dance with the devil. Good luck.
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