Ten Months After All Treatments Ended - Advanced Prostate...

Advanced Prostate Cancer

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Ten Months After All Treatments Ended

TottenhamMan profile image
16 Replies

My Oncologist stopped my Eligard injections in October of 2022. My August 2023 bloodwork shows that my testosterone has risen from 2.0 to 10.0 in that time. My PSA was <0.1 ten months ago and is now 0.1 (Canadian units).

I know that this cancer is a long game, but given my diagnosis in 2020, I am happy with where things are currently at. As TA once wrote, so far so good. I know things could get much worse and I’m taking nothing for granted.

After the side effects of ADT wore off I started to feel better, even though my testosterone is still low. It’s not a vacation. I just reached the end of my 24 months of ADT.

I hope and pray that both the testosterone and the PSA continue to remain at low levels.

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TottenhamMan
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16 Replies
OldVTGuy profile image
OldVTGuy

Sounds good and bet you are happy to be off the ADT. Did you have testosterone tested before and would you not want it to return to the same level? A T level of 10 is pretty darn low!

TottenhamMan profile image
TottenhamMan in reply to OldVTGuy

Thanks, I’m in my 72nd year and my T back is not an urgent matter for me. The radiation and ADT did a real number on my libido and my erections are only in my memories. If the T feeds cancer that it can stay as low as it wants. I’m feeling much better with no ADT in my body and if this is it then I’ll gladly accept it.

Mike1971 profile image
Mike1971

I’m in a similar situation - being off ADT is such a relief.

My testosterone has been around 0,3 nmol/L since april 2021. Last Lupron shot in January 2023. Testosterone still at 0,3 nmol/L in June 2023. Stopped Abiraterone in July, and about 6 weeks later I could feel the testo coming back. Such a difference both mentally and physically.

In two weeks I will get bloodworks done to see if PSA is still undetected, and at what level my testo is.

I hope your PSA continue to be low!

in reply to Mike1971

Just curious, what does it feel like to "feel the testo coming back"? What kind of difference does it make?

Mike1971 profile image
Mike1971 in reply to

The brain fog and fatigue are almost gone - I have a lot more energy, and working out I notice I get stronger pretty quickly and muscles are coming back.

For me, the sexual side effects of ADT were the hardest to accept and they affected me greatly. ADT combined with a few unlucky events threw me into a deep depression of despair where I needed CBT therapy and maximum doses of two different anti depressants to even cope.

Now, my libido is coming back, I get morning wood all the time and I can enjoy normal orgasms again. I have soon tapered of the anti depressants and feel a level of happiness I haven’t had in two years.

I know I most likely will have to go back on ADT at some point and this scares me a lot. I’m not entirely sure I will be able to do it to be honest.

ADT is wonderful in that it is keeping a lot of us alive and even starves the remaining cancer for some, and a lot of people seem to manage the side effects fairly easily. For me, ADT has been a nightmare.

TottenhamMan profile image
TottenhamMan in reply to

I actually didn’t feel the testosterone’s coming back, probably because of my age. I have no libido at this point and doubt that it will return, but that’s okay if that is the price I have to pay to keep the PCa away for a while. Being off the ADT is a big relief though.

TottenhamMan profile image
TottenhamMan in reply to Mike1971

My last Eligard shot was in April 2022. My treatment stopped 6 months later. In April 2023 my T was 2.0 but I didn’t feel anything coming back. Maybe a sense of something stirring in my loins but it was probably gas. In April 2023 my PSA was <0.1 so I was happy. Now it’s 0.1 and my oncologist tells me that is a great start.

I don’t have the aching joints, aching muscles, or hot flashes any more which is a relief. I did have mild heart disease before the PCa arrived, and had a small heart attack in July this year which may have been the result of ADT side effects. I survived that with no damage so things are great.

Best of luck with your test results Mike.

treedown profile image
treedown

Your right that unless your cured the low T will keep the cancer down. Mine came back in 3 months and PSA hit 2 in about 14 months. Back on ADT and Zytiga now. Hopefully your cured though in which case you have all the time in the world to get your T back.

TottenhamMan profile image
TottenhamMan in reply to treedown

I don’t even dare to consider a cure as being on the cards. It’s only 10 months since the end of my treatment and if I’m honest, if my T goes back to normal, I’ll probably do nothing but worry about where my PSA is ultimately headed.

I’m sorry that your time away from ADT only lasted 14 months. It will not be unexpected if I’m eventually on a similar trajectory. The only thing that nobody expects is the Spanish Inquisition 😀.

treedown profile image
treedown in reply to TottenhamMan

No doubt you would dodge that as well :)

PSAed profile image
PSAed

I too have finished my 2 years on LUPRON, last injection June 2022. Also had EBRT 39 fractions over about 5 weeks. My last PSA test ( March '23) was undetectable T @ 8 ( range 10-30) so just below normal. I would gladly take low T if it meant no more devil's brew LUPRON! My next 6 monthly PSA/T test is next week, then about another week wait for results.😱 LOl

Dx 2020 PSA 17 Gl. 4+3 =7, T3bN1Mo

Hopefully you continue with good results and enjoy normality. Best wishes.

TottenhamMan profile image
TottenhamMan in reply to PSAed

I totally agree with the test result anxiety. In Edmonton where I live we get our lab test results the next day so the wait isn’t long. In April 23 I was undetectable too. Now I’m barely detectable. Low T for me is totally acceptable. Just keep the ADT and PCa away from me.

I wish you well with your upcoming tests.

Grandpa4 profile image
Grandpa4

I am a year behind you. My 2 years are up in February . I have read that it can take 5 years for testosterone levels to fully return after 2 years of suppression.

TottenhamMan profile image
TottenhamMan in reply to Grandpa4

Hey Grandpa, I’m not sure that I want my T to return to normal levels. If more T potentially means higher PSA and a return to Eligard then I’ll stay with low T.

VCinTx profile image
VCinTx

Please read "Testosterone for Life: Recharge Your Vitality, Sex Drive, Muscle Mass, and Overall Health". After one year of PSA undetectable, I chose to go on TRT to get my QOL back. Read this book and decide for yourself.

Celiko profile image
Celiko

Hiya, my first post here. Just been reading your posts guys, trying to work out some sort of practices your doctors are using. In my case - I'm 73, last year 2022, had a prostate op, biopsy detected 80% cancerous cells. My oncologist put me on enzalutamide tablets, 4 every day for life! Thats were her words. And Zolladex 10mg, injection every three months. Once in 3 months I have a blood test for PSA check(her main concern?) And a quick telephone chat aftwards.

The side effect are too bad, I can cope with that. Hot flashes, tiredness, brain fog, mentally fragile - falling into depressive moments, crying at a drop of a hat, etc. You all know that. LUckily I keep busy myself, have a teaching job. Daily routine in the park, walking 6 km, workout on outdoors machines in the park, yoga, stretches,.

My libido though is not existent, etection as well. These are the most bothersome side effects.

MRI scan showed M3b, N0, M1b. Metastasis in bones. Gleason 5+4, advanced.

Sometimes I wonder - am I an experimental?

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