I am really hating being on HT now my treatments are over. I am on monthly Degarelix and daily Abiraterone.
Clearly I love my PSA having the less than sign and want it to stay that way but am starting to be miserable with how much the HT is changing me.
it’s not just the no libido which on its own is a QOL disaster but the energy and drive loss. I was at my 63 year old brother in laws stag last night. I am 59. We used to run together and drank about the same last night but he was up for a 5k park run and I couldn’t get out of bed.
I am back with my PT at the gym 3 x a week and on the pelaton but my energy is so low.
work too .. back full time but my drive has gone AWOL.
Is it just early after my numerous treatments or is this life with HT.. a fair bit dimmer than life without HT but better than dead?
I really want to know if there is another option in my future to look forward to or is this it?
I know I should count my health blessings re my PSA, my scans, my lack of symptoms, normal peeing etc but am missing my testosterone today.
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Brysonal
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Can totally understand your situation Brysonal I’m same PSA 0.01 > a year bladder functions normal but H T this summer has left me intense hot flushes sometimes ever 2 hours Zytia 500gm daily dosage gives me lack of energy too told 2 years mark my medication will be reviewed which is Dec 22 !
I forgot to mention the hot flushes! I will follow you now Chris and good luck with December review. My London onco says HT for life ( SOC). Finland say to review July 2023. I am very interested in the J591 that Mateo beach is reporting on. .. feel I need 6 months before even enquiring though!
I don't have hot flashes, but in a last 6 months I noticed that I am slowing down. Maybe it is because of the COVID 19 restrictions. I was inactive for some time. I believe that is why I am slowing down.
I started deadlifting every week only one set with 20 repetition 55kg. That is good for my back. If i don't recover in one week than I wait for one more week to do the deadlifting.
I can't run. I was able to run not so long time ago. Now I have problems with my leg muscles. I hope that I will recover and run again. I was only running maybe 70m. I don't know how others can run 5km.
Are you taking metformin? I stopped taking it as my vitamin B12 levels dropped under the lowest recommended level. It is not so bad but it is a worry so I believe vitamin B12 levels should be checked if you feel tired.
I really don't care until i can still walk. I could live long like this but I shouldn't slow down more. COVID 19 slowed me down consyderebly. I knew that it will happen. I had two falls but it was ok, nothing serious. My legs are weak to hold my weight. I should try to lose weight.
I believe that weight lifting is essential for us, but we should know that we need more time to recover as our testosterone levels are low. So we should not overdo it. For us less is more.
Thanks for that. I am back at gym and doing weights with my PT trying for 3 times a week but commitments/ work are meaning it is sometimes 2 but will try to get the three in as priority. I agree weight training is priority as plenty of evidence for that. I am considering some hyperbaric oxygen chamber sessions. No evidence they do harm!
I believe if you don't use it you lose it. I don't care for it now. Degarelix is used in Sweden on sex offenders. It definitely kills a libido. Libido is one and the function is something else. I have other priorities more important. If you want not to lose the function than you should use it. For me it is too late.
I believe it is possible but I am single so I don't have motivation.
I am on darolutamide and lupron, and hated the muscle and joint pain, i started doing Osterine and Carderine but I haven’t had blood tests yet. You can research them.Osterine aka enebosarm is in phase 3 clinical trials for breast cancer.
These are called SARMs, well Carderine isn’t really a SARM. Please research these on nih.gov and please do your homework on them if you are interested in not feeling any side effects from ADT. You can also search on this forum for SARMS. These are not SOC but they were developed for muscle waistline maladies. I will be posting my results starting in a few weeks after my first tests come in. There are some on this forum doing n=1 experiments because we can and because we want to.
Yes it is risky but so aren’t these SOC drugs.
SOC for our stage is just life extension not quality of life. It is up to each individual how they want to live with or without ADT symptoms.
You can also look up the really really muscular dude’s in the gym and ask them
Please don't take offense to this. I see this talk often and I can understand it and for heaven sakes you and so many of us need to get it off our chest to vent about the side effects.Once in awhile when I see a post like yours and the replies from others who have somewhat low volume diagnosis I want to put in my two cents because it seems your so close to being without PC that you forget it is out to get you if you give it a chance.
With my history I inadvertently experienced the initial death from prostate cancer symptoms.
Not pleasant at all. Its too much for me to unload all of it in written words. One thing ironic is my mind went to crap very similar to ADT side effects. I was a zombie and I also had anger issues pop up which were unheard of from me. No motivation etc. from early effect of dying.
I noticed that at one time scans showed you had mets at ribs and elsewhere?
As far as treatment I say tough it out man. Time on earth if you can still see, smell, touch, hear, is worth it.
My step father had recurrence in the late 90's soon after surgery. Spread to a rib was found. He had chemo and orchiectomy and just passed away February of this year at age 88.
Thank you for that. Yes I indeed had mets popping up all over last November and PSA increasing rapidly. I am a conundrum apparently with my G3+3 initial diagnosis and no known genetic defects indicated.
I have responded really well apparently to the treatments I have undertaken and do appreciate it’s early days and I need to stay tough and hope for stability.
It sounds like you had a torrid time of it, sorry to read that.
However things are rapidly changing so I am watching the science and hoping for a breakthrough in stage 4 as we all are. Unfortunately with HT v PCa the PCa will always win it’s just how long till it does. For this reason I went further than basic UK SOC which was just ADT plus an advanced hormone.
However for now hanging tough is definitely the plan but a mix of a place to vent and reading of others experiences plus links to clinical trials have really helped me on what started as a downer day.
Thanks yea stay positive. Sometimes I unintentionally put a cloud in a otherwise bright day. I sound like a reformed ex-cigarette smoker always giving the "I can tell you" analogy lol.
It’s important to have a balance so keep on giving that is my view. I’m repeating myself from another thread but absolutely think avoiding an echo chamber is vital to a community like this.
I appreciate you both taking the time and being prepared to share.
How your biopsy sample progressed from 3+3 to up? What is your last Gleason score now? How did they find out that your Gleason score progressed? Did you do a New biopsy? Or was the sample read wronly by the pathology? How did you decide to do the biopsy again?
My biopsy at the start of 2021 showed NED post HIFU but with PSA going up my first PSMA PET scan showed two bone mets.
I was really pushing for a biopsy but was advised against by three oncos but to start my systemic treatment without biopsy.
Finland did plan a prostate biopsy but the hard shell left by the HIFU meant that was abandoned and they planned based on multiple scans/,PSA and a CDNA test.
So no biopsy result / Gleason score to share post APCa diagnosis!
Maybe I should have had a bone met biopsy. I think that I would have had a somatic test on that if so. I have two previous archive biopsy samples but not sure how relevant they are today. My basic genetic test came back zero results.
PeterMac rejected my original prostate biopsy sample for quality reason.
Therefore no genetic testing for me from the 4 years old prostate biopsy samples.
Now we should first find out with the scan where to biopsy me.
As my PSA is still very low i am not sure if any scan would show anything at the present time.
Liquid biopsy would most probably not yield anything with the PSA 0.9 so that would be a waist of money to order the liquid biopsy now.
Even if they will be able in some point of time in the future to get a biopsy sample from one of my bone mets they should use some acid in a process to remove a bone in order to prepare the sample for genetic testing. Therefore it is possible that the sample will be damaged in this process and end up not suitable for genetic testing.
I don't really care too much about a genetic testing until my therapies will work as the cancer will mutate in the future during the deployment of Enzalutamide.
When Enzalutamide fails will be a proper time for a genetic testing.
The problem is that to get back the genetic results after the submission of the good quality genetic material 4 weeks is needed.
That is a lot of time.
What is NED?
What is CDNA test?
They made a note on my biopsy sample that Perineural invasion is present. Do you know what does it mean?
It was present. At the time ( 2016) I was told it wasn’t important but now I believe things have moved on and may a HIFU was never a good idea for me. Heigh ho hindsight and all that!
I might delete my reply. It doesn't really fit with the flow of info in this thread.
Also the risks that are mentioned in the replies might for those with basically remission while on ADT not seem so high although when smurtaw says 35mg SARM his PSA stable but 100mg SARM PSA rises that's enough to scare me away but again I am not in the shoes of low volume undetectable PSA guys.
Ya smurtaw likes doing things to extreme lol. He is a bio tinkerer. The dose of SARMS was WAY above what anyone has ever done. Bodybuilders do up to 20mg/day. I do 5mg/day and now smutaw said he is now doing 1.5mg/day.
My onco in Finland has indicated he’d be prepared to discuss a vacation if I stay stable until next July so that will be 18 months of HT and 12 months from getting a ‘less than sign’.
I’ve only seen that for 1 month so appreciate its too early for action but would be great to have something to look forward to.
My London MO will definitely not discuss a vacation and he is SOC so monitors by bloods / weight each month, organises the Degarelix shot and my Apalutamide pack. We have a chat, they offer some treatments in the London Oncology centre such as reflexology and massage ( he’s approved. Me for massage by their cancer specialist team) so I can do that if I want and it’s see you next month. He knows I am watching clinical trials etc but has said ADT for life is SOC. That’s a bit depressing so I am keeping the faith in the Finland open mind view and researching options to discuss even for 2023 will help me I believe so very interested in all vacation type info.
After beginning treatment my QOL took a serious hit, but after some re-calibration, life on HT is still pretty damn good.
I’ve been on Lupron/Elligard and Abiraterone since October 14, 2020. The first dose of Lupron kicked my ass. There were times I just could not push through the fatigue, and the sweating and hot flashes made sleep challenging. I would also get periodic chem (hormone?) dumps that would crash my mood.
However, I found that even on the worst days if I walked or worked out I would feel better. I still experience these side effects, but they have lessened over time, and weight lifting seems to help the most. I also lost almost 60 pounds.
About 3 months into the treatment I lost my ability to get and sustain an erection. My T was at non-detect levels, (where it has remained). I thought my penis’ sex life was over, but I had read that it is important to maintain the erectile tissue, so I tried a pump. Not much success, but it did increase the blood flow to my penis. I use the pump most days, not for sex, but to maintain circulation. After a while I thought the pump was a bust, but I was determined to not give up hope for a miracle. And then,… last November my wife and I were cuddling (naked), and wee willy raised his head. We had a blast! And it was very affirming to be able to achieve penetration, even if my erection is smaller now.
My wife and I determined to do everything we could to enjoy our rekindled sex life. In order to maintain my ability to achieve an erection I tried Viagra, but suffered from headaches. I finally got a prescription for Trimix 2 months ago, and I use it 3 times a week. Nal also recommended Avena Sativa and Stinging Nettle. I take those daily.
I have not regained my normal libido, but our sex is the highlight of our days, and we are busier in the sack than two 17 year-olds.
I can't speak for others, but 20 months into treatment - life is pretty damn good. Would not have bet $5 on that the first 6 months of HT, but glad I pushed through.
We all know that the disease will progress, but until it kicks my ass, I plan to keep hitting hers
Thank you Carlosbach. I am ordering a pump today and definitely up for a naked cuddle! Really good to have your reply. I love my wife beyond anything and the lack of intimacy is a real downer.
We've been married 43 years, I have no libido or testosterone, but love for my wife and a desire to please her (and her desire to please me) resurrected my johnson. I hope you have the same experience.
I'm right there with ya. I spend about 20 months on Apalutamide ( Erleada ), when I started my PSA was 165, after 6 months it was down to .2. However, after that it continued to climb back up to around 40 before they switched me to Xofigo for three months ( didn't help ) and then Zytiga ( Abiraterone ). Fatigue, sweats, nausea, not motivation, and enormous muscle loss that to that with Lupron. I tell myself everyday, I'll never wake up feeling good and energetic ever again.
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