I have to post my experience of having once stopped treatment. I see various posts here with guys asking about stopping their treatments.
I started treatment when I was 52 years old. ADT, Chemo and radiation. After treatment PSA went to undetectable. After 2 years with undetectable PSA I thought I was doing great. I had no idea. At this time I was very upset with the what was happening to my body, especially with the shrinkage of my penis and lack of sexual function. So what I did was stop taking my 3 monthly Zoladex injection. I monitored my PSA every 3 months and it didn't move for the first 6 months, then at 9 months it was 1.0. I panicked and started with the ADT again. PSA responded and came down to .17 for a year then started climbing. I became castrate resistant and PSA is still climbing and I have new metastatic disease spreading.
I know everybody responds to treatment differently and have various side effects. This is what I experienced and at the time I made the decision to stop the ADT, I was not informed. Like I said I had no idea what I was up against. I was more concerned with the side effects than I was with the disease. Be informed before stopping treatment, don't give the cancer a chance to advance. It does not go away, it is working around everything so it can spread like a disease. Which it is and you have a disease so keep treating it.
Written by
Islandboy2021
To view profiles and participate in discussions please or .
Great post Islandboy! Happy Easter …Your post is long overdue in my opinion . Guys are dreaming with their head in the sand or up their culo ,if they think this #4 has a cure . We fight it for life . It fights back .I’m sorry for the uptick . I want you to put it down again . I tell newbies that the first round is the best chance for a remission . Now you must double up and fight again .. Ego must go first . I’ve read here for six years men wanting a vacation asap . We all can understand that desire to return to the old you . Shrinkage hell , But , I personally started more in reverse gear than most men here . I watched and felt the sharp teeth of stage#4 bite into my urology . K failure resulting in bi- lateral nephrostomy tubes ( google that shit} and a frickin foley in my penis for a yr then internal stents for another yr . It was pure hell for me and my precious spouse that married me in that condition . Her loved saved me . I did have an idea of the severity of apc . Doc gave me 50/50 to survive my initial treatment . I was 53 ,now 62 . This urologist said 24 months adt 12 months with chemo,giving me 36 months tops to live .I stopped peeing on Super Bowl .The Seahawks lost . Had my last sex just prior to the game . It was wonderful . .then I tufted out uremic poisoning until Monday when I got to a uro for the first time . A liter and a half of pee was brutal pain . A nice young tech told me “ Welcome to the golden years as she inserted my first foley . “ I knew I was f’d … They strung me out until I went to see the tech in the uros office Friday the 13th .. I told the tech I don’t feel like I’m going to make it , she said this isn’t urological , this isn’t our doing , go see your GP on Monday , but just in case , go to lab Corp and kidney check . So we did , But an hour after we got home the call came “ Go to the er you are in kidney failure . So I did then in the icu for a week . I went into k failure awaiting the uro to return from spring break with his kids to biopsy me . I didn’t make it . It was malpractice but no one else would take me at the time . . I was T-4 “ the HORSE was out of the barn “ he said .. he also got mad and told us that he couldn’t make any money off of me . The big money for a uro is R.P.’s .. told me to eat whatever I wanted .Basically translated to I’m going to die anyway . I won’t mention his name . He’s human . He chopped my balls two years later and was happy as hell doing so . In the beginning he said if I was 10 yrs older that they wouldn’t even try it , because I wouldn’t survive it … Luckily he hooked me up with Dr. Pariminder Singh . A pc specialist and Sikh warrior . He explained to me how t will feed pc and kill me . He said Sikhs can not fight for themselves . Only for others . So you now have me , a Sikh warrior fighting for you . We love that guy … He ran the tak test test at the u of a tuc az . He made the right decisions for me . Imrt instead of chemo . He’s now in mayo Scottsdale . He saved me . The old school says if adt or treatment is working ,stay the course ! 8 wks imrt for me it was . I,did lupron 2 yrs then an orchiectomy , that is how fearful I was of pc s return . Then I continued on tak-700 {now a defunct adt test drug } until just a few months ago .Not one of my 4 oncos over these years even hinted at a vacation for me . Nobody wanted me to go back to wereI was again . I was on tak stopping adrenal t For 8 yrs total . I went undetech after my 1st and only 1 month firmagon shot . I have done a complete alt med , diet and nutrition plan from Dr. Michael Uzick Genesis Med. Tucson Arizona to date .. he’s one of only 100 naturalpathic oncologist in the U.S…I did ayahuasca twice , mushrooms 3 times lsd and some other Amazonian drugs that dropped my fear of pc death , all with great lasting healing effects . Also I’ve done home made Rick Simpson high thc cannabis oil program twice and continue on a twice daily micro dose to date . I ve tried many home made alternative cancer remedies . I ate scoops of organic tumeric and raw garlic and fasted two days out of five of imrt . I lost 65 lbs in two months . I gained back 30 . I’m skinny ,and weak and I can’t spell anymore . But I’ve got love at home . I haven’t seen anyone else doing all of this . Im not saying that I’m any better than any other man . My wife has insisted that I do everything possible to stay around . I just say aye aye boss lady . She runs the ship . I’m a happy passenger . Mom taught me how to pray at 4 Yrs old . And I’ve never stopped . I’m in constant prayer for you now and all of those that are suffering . That said , if a man with metastatic Prostate cancer #4 doesn’t understand or care that pc is bent on killing us , then let him choose his own path . For the first time in 8 Yrs I’m off all pharma . I know that if I live long enough pc will come back on me . It is stated inevitable ! Only God knows . Live for the day . Practicing daily happiness is a must . Try natural things alongside the poisons needed to kill pc . Save yourself . Save the host . You can still do it . May the sun shine on you .. stay strong ! Sorry for my me me me theme here . It is all about you Islandboy and getting you on a level plain again or back to zero . I am a nobody . Keep the faith , stay positive . 🙏🏼🙏🏼🙏🏼❤️. God bless!
Hey Scott you're not a no body by no means around here brother.
Appreciate your presence even if you cant spell lol. I cant either no matter how long I stare at the wall or out the window. I was the guy everyone at work would come to when they couldn't spell something.
THANKS , you are too kind . one of my favorite movies Is deadman with Johnny depp . His native friend is called nobody…Worth a look if you haven’t seen it . ❤️🙏🏼
That is one of my all time favorite movies. Good for sparking a bowl before watching. I like it when J.D. is taking the train across the country and the look of the people and the scenery outside changes more and more as he gets closer to the Pacific Northwest.
Another good one by the director Jim Jarmusch is Mystery Train I highly recommend it as well.
No bs CAMPSOUPS! I was always an A student in English . Now I’m asking Siri’s help ten times per reply on simple words . Crazy man . But my penmanship always sucked …The Cursive that they don’t even teach any more . Just like driving a stick . Most kids never seen it…
I'm used to it now but I was pretty shocked when spell check apps couldn't figure out what word I was trying to spell.
I was a rebel against the cursive lol. I alway did a stylized capitaliztion thing with letters/words. Its become really sloppy over the years as I dont put any time or pride into it anymore.
I love that line “Welcome to the golden years" and the image of an old battled-tested nurse sticking a foley up the urethra of a wide-eyed senior for his first time. It's emblematic of our plight...! I bet that nurse got a lot of mileage out of that one.
It’s nice of you to say that . But maybe it’s the opposite from the admin? A few of my good friends are now banned from this cite completely ….big brother big pharma controlling the narrative . Take care Lettuce 231! Thanks
Thank you Islandboy2021 for your honest and considerate post. I have saved this post and will reread it when my time comes. I am presently undetectable for the 6 months since my final ( 2 years completed ) Lupron injection . I did struggle while on Lupron and if I have to go back on it I will refer to your post should I be tempted to take a break. Best wishes.
Could you go back? My oncologist prescribed firmagon to me. I believe that if they want you to stop your treatment than firmagon is a preferred script as your testosterone would recover quicker. All of this is a mess. I prefer firmagon myself.
Yes the T recovered quickly for me but so did the PSA when I stopped. Now the 3 month Zoladex is more convenient but the size of the needle & pain of it is making me think Firmagon again.
I imagined that more pain is a sign that it also acts as immunotherapy. High temperature plus high leukocytes.
If they inject you properly and slowly deep into the fat tissue you should not have much pain. They also should change injection site and avoid hitting the scare tissue form previous injection. They could give you just under the skin and that is very bad. They should inject it deep. You should find a nurse who wants to do it properly and not just get rid of you as a customer so you don't come again. They are instructions on the internet from the company who is producing firmagon plus you could find it even on YouTube. I don't mind if the nurse don't want me as a customer I just show up at the next appointment. I wish you luck. You could even inject yourself but be careful not to hit the previous scar tissue as it is not possible to push the syringe. They should palpate with their finger in order to avoid the hitting the previous injection sites. If they do they should change the needle and incect it somewhere else. They should not wait to long to inject it as it can become very difficult to push if they wait with the injection after reconstruction.
The best is find an experienced oncology nurse who is doing Degarelix (firmagon) injections on the regural basis.
What happens to us in the physical sense is a nightmare, I dread the thought of having to be naked, my manhood was bigger when I was four years old. I guess that I can still use it for what I did back then. Tha rest of me looks not at all as I might have expected for my age either.
I was also in my 50's when I was diagnosed, nothing really prepares any of us mentally for what battle lies ahead.
The risk involved with taking a " vacation " is incredible, I'll never understand why anyone would, we all feel like a sack of sh1t tied up with string, but if you've got the beast trapped for the time being, why let it out again, it will kill us. Its not worth trading the pain we've already experienced for a few short months in which our bodies don't really recover, just to have to experience it all over again.
After two years on Zoladex injections and undetectable PSA I decided to stop treatment and get my life back. This was in Sept.2011. I was living overseas and it was also a money issue.
Two years later the PSA had increased to 8,0 and I started Zoladex again. The PSA never got down to undetectable again, it was 0.3 at one reading in Jan.2015 before starting a slow rise again. Eventually Xtandi made it drop.
I still wonder if it had made any difference if I had not taken the vacation from treatment.
I too took a vacation after nearly 2 years on Firmagon, PSA went up to 4 or 5 so started Firmagon again & now Zoladex but the PSA will not go much below 1 now. From what I read here the message is do not have time off ADT.
Islandboy2021wrote -- " I have to post my experience of having once stopped treatment. I see various posts here with guys asking about stopping their treatments ... "
8 years ago this month my Urologist advised me that the FIRST decision I had to make to begin PCa treatment was a choice between a number of ADT drugs.
My response was to say NO TO DRUGS and just do a bilateral Orchiectomy so NO Vacation unless I went on Testosterone, as I have done but ON and OFF
----------------
Lettuce231 wrote -- " ........... my manhood was bigger when I was four years old ... "
IMO -- One's *MANHOOD* is located in One's head between the shoulders NOT the thighs
Relocated to SW FL from NJ in 1986 and thankfully the FROSTY MORNING occurrence has been very rare. I still have the clothes when I used to ride in the snow so I'm always prepared.
I’m 9 months undetectable following 7 months of treatment last year when I had multiple bone mets.
Had the OVM-200 vaccine in Dec and got final clinical trial sign off visit this week with full scans and bloods.
If I get to 12 months undetectable I am due to discuss coming off ADT but keeping on my ARSI (Apalutamide) and monthly PSA tests - straight back on if it moves at all.
I am following the results of the EMBARK trial which should ( at an earlier stage ) an ARSI mono therapy was as good as combo on ADT and ARSI. Obvs not comparable but an interesting g hypothesis that if can have your testosterone but then block it.
My totally irrational (stupid) hypothesis from 8 years ago with GL10 - remove testicles + take care of adrenals + treat PCa + experimental IMMUNO injection to add a boost to system and leave 1/2 of prostate as a sacrificial ZINC for PCa to settle in instead of finding new home in body then shoot up with Man made Testosterone having no DNA value for recognition of PCa cells roaming to dine on then stop Testosterone to go back to castrate then on again to keep anything cornfused and continue to rinse and repeat until mets show up.
I just saw the new version of the “ The Magnificent 7’ it’s ten years old now …a joke told . .. A guy fell off a 7 story building . As he fell and passed each floor he was heard saying , “ So far , so good “! I’m not applying that to you . Just chuckling it up in support . As far as I’m concerned your are one guy taking shots at this . I did it my way .. Bravo and live on brother .
I often wonder why am i taking Orgovyx AND darolutamide especially since daro has the strongest binding to the androgen receptors than any of the other ari’s.
What or how would normal T help if im blocking the Andro receptor? The only two things i can think of is darolutamide doesn’t cross the blood brain barrier so my brain may benefit i think AND Maybe my estrogen would return to normal thus bone and brain health. Any thoughts on this?
oh additional thought: Would having normal T while on Darolutamide keep my cancer androgen dependent thus not becoming castrate resistant?
I am currently hormone sensitive and on Zolodex (following reaction to Degarelix) and Apalutamide.
This is what I want to discuss with my MO but I don’t think they know what reduction in side effects you would get if you produced testosterone but had its impact on prostate cancer cells inhibited by an ARSI. For me any combo of reduced ‘energy drop outs’, reduced hot flushes, increased libido, increased drive would be of interest. Since the switch from Degarelix to Zolodex I have felt sharper mentally. basically I’d like not to be medically castrated but instead have impact on my prostrate cancer inhibited!
The EMBARK trial used enzalutamide as a mono therapy in the hormone naive with high risk of reoccurrence and MOs seem v interested in getting the full results.
I guess those of us with APCa that is currently undetectable on PSA and scans are all high risk of reoccurrence due to micromets. We do know if we are relying on ADT to suppress the progression it will fail at some point, so alternative approaches have to be expedited.
I started a new post on this subject. It is a very important and interesting subject and I thought it would get more attention as a new post., and is not the exact topic as this great post.
This is a decision each of us must make, based on clinical data, input from our medical team, forums such as this as our personal preferences as we balance quantity and quality of life. This is more of a heterogenous than monogenous disease though similar characteristics run in all.
Here's my clinical history. I made the decision to stop treatment after the triplet therapy I started in Jan 17 when surgery and SRT failed, my GS, time to BCR and PSADT and PSAV were all clinical indicators of an aggressive PCa.
I was able to enjoy 4-1/2 years off treatment, T returned, 600, higher than when I started! We actively monitored, labs and consult every 2-4 months, would image with Plarify when PSA rose(we required three or more consecutive increases) to .5-1, make a treatment decision based on the clinical data
It is back, a single lymph node, likely micrometastatic elsewhere. I wrap up my meetings with my medical team this week to finalize treatment decision but here's what I expect WE will decide, stereotactic radiation therapy to the site identified in the Plarify scan (simulation set for wednesday), six months of ORGOVYX, approved, arriving today ($68 copay for one month supply) and potentially adding another ADT such as Zytiga, Xtandi....depends on our discussions with medical oncologist on Friday.
Saint Luke’s Plarify 27 March 2023
FINDINGS:
Physiologic distribution of tracer is seen in salivary glands, lacrimal glands, blood pool, liver, spleen, pancreas, ganglia, bone marrow, bowel, kidneys, and urinary tract.
Prostate bed: No focal PyL uptake in the prostate bed to suggest local recurrence.
Lymph nodes: There is focal PyL uptake in a posterior right pelvic lymph node measuring 3 to 4 mm (4-176).
Skeleton: No focal uptake of PyL in the skeleton
IMPRESSION: PyL binding in a pelvic lymph node compatible with metastatic prostate malignancy
As with my and my medical team's prior decision on stopping treatment, stopping after six months will be based on the clinical data. If we do, we will actively monitor, labs and consults frequently, decision criteria when to image based on labs and go from there.
I absolutely knew that my PSA would rise after I had to stop ADT. I was hormone sensitive but unfortunate enough that I could not tolerate the severe side effect of depression so bad I was bedridden, depressed, and even suicidal for 11 months while on the one 3-month shot and then after. My PSA is definitely a marker for the growth of the cancer in my body. I have identified mets in my left side lymph nodes top to bottom.
My PSA rise is starting to accelerate now and my MO has started to double my labs to every 6 weeks (from every 3 months). I had new scans for bone and CT tumors which are so far not indicating anything but hey are not as sensitive as the PSMA-PET/CT scan I had before. My MO says that all I can do is watch the PSA rise and start chemo if I decide to do so. Since I am hormone sensitive I am not eligible for any castrate resistant therapies and they have been ruled out due to unknown risk of side effects even if they were allowed by SOC (not).
So, stopping ADT is definitely affecting my PCa and it will continue until more serious symptoms appear (bone mets, tumors, etc). At which time I could get spot radiation for any really large bone mets, significant tumors, and/or pain (for which I can get opiods). So stopping is serious business. So is the dramatic drop in my QOL from the therapy. I can keep the cancer at bay (until castration resistance) but I would be essentially a tortured, non-person. Better to die faster and enjoy what life I have to live.
This is a personal choice of course. That does not make it less real. Good luck to all. I seem to be on the extreme end of depressive side effects. But I strongly suspect that there are more of you experiencing this and don't want to make a big deal of it.
Sorry to hear of your predicament , it really is being " caught between a rock and a hard place". I too suffered depression, anxiety and insomnia , but... thankfully... not to the degree you described- LUPRON 2 years completed 6 months ago. I was prescribed Mirtazapine which worked very well for the insomnia but not so well with depression. However I started physical exercise- weights and cardio , nice and easy to begin with, and slowly increased the workout levels to tiring myself out. This resulted in an overall improvement mentally and physically ,and I now religiously stick to it everyday. I strongly recommend it. Best wishes
Physical exercise is a very, very good therapy for depression, anxiety, and hypomania/mania (if bipolar). It certainly works for me although I don't do it as much as you do. I would benefit more if I did. It works much better than the many different meds I have been prescribed over the decades. I get very little help from any meds I have tried, and I have tried every class of med for depression. I wish you continued good help from your exercise. It was a good thing to remind others, and me, about.
Wand to add to your workout regime comment. My back history is that I am on my third bout with PC after radical prostatectomy in 2011, salvage radiation in 2016, and now PC is back again. I started Lupron and Abiraterone the summer of 2022, chemo Sept to January and now on the ADT's for the near future. I have been blessed with minimal side effects from chemo or ADT's. But I do feel part of that "luck" has been that I do strenuous workouts 4-5 days a week and go for walks or some sport every day. And my wife is a very healthy cook...lots of veggies, salads, chicken, fish, etc. So may just be coincidental but can't stress enough how important it is to take care of our bodies in a non-medicinal way also. Helps our bodies and our minds!
Could you go overseas and organize one or 2 infusions of Lutetium if your cancer is not low volume and if the PSMA scan confirms that you are eligible for the treatment. The best would be Heidelberg University in Germany. They could make the assessment and the recommendations for you. Their are also some clinical trials I believe in Holland.
Thanks for the suggestion Seaside. My MO said that I would not be a candidate for this type of therapy. I would love to spend some time in Heidelberg. I was in the Army in Mannheim and it was a short drive or local train to Heidelberg. I would visit often to party and explore the history and architecture there. It's a very scenic place with a long history.
If I where you I would ask for a second opinion in Germany about lutetium or actinium treatment. They will assess you for suitability with the PSMA PET scan. You could even be maybe eligible for proton radiation therapy. I am not a doctor but I would not rely on one MO opinion. It is really up to you. They are very good according to the feedback on this site. I wish you luck.
Thank you for your persistence in recommending that I get a second opinion about the use of proton therapy. I will not pursue this any further. I have attempted to do my own homework on this, and while I am not a medical or radiation oncologist, I believe there are a few good reasons to not do so. First, I believe the odds are against it having a significant positive effect on my personal, specific evidence of the cancer in my own body. I have metastatic disease in my lymph system in several different areas with multiple nodes in each per a PSMA-PET/CT scan. This would require irradiation of multiple areas, including all sides of my pelvic area, my abdomen in a few places, and up to my shoulder/neck.
I am unwilling to get that much radiation and I agree with my MO that I am not a candidate for any type of radiation. Also, it would be extraordinarily expensive and I will not drain my savings which my spouse will need after I am gone for a high risk and low benefit probability procedure. I have not found any case study where this many areas of a patient's body are irradiated, even a clinical trial. If the standard protocol for localized disease is followed it would require up to 8 or more sessions for each location and I do not believe that any radiologist would ever allow a patient to get that much radiation in a long time frame let alone a short one. I could be wrong but I also don't think my insurance would cover the therapy, even if within the US. I might get some of the medical costs reimbursed upon appeal but not the travel and living expenses.
My PSA was over 19 five weeks ago and it is rapidly rising. This would support the finding of multiple locations. I don't yet have a defined tumor (CT scan) or significant bone disease (per bone scan) just done in the same time frame. Given my situation it is unlikely that the disease is only in the lymph nodes found six months ago with the PSMA-PET/CT scan.
I cannot get ADT even though I am hormone sensitive due to the severe side effects I had from one 3-month Lupron injection. I am not eligible per SOC, and from the known science, for the castration-resistant therapies. I could get chemo if I wanted, which I do not, but from what I know it is not recommended to assault the body with both chemo and significant radiation at the same time. Even if not demonstrated, I am not willing to do that myself.
Just because some men with PCa have benefited from a particular treatment does not mean that too men with PCa will benefit. I'm not trying to be difficult in saying this obviously true statement but it happens to be a sore point with me. I do thank you for making the suggestion. It did cause me to do some additional research in to the possibility of benefiting from proton therapy.
I have another consultation with my MO plus PSA analysis in two weeks. I'll bring it up with him again. I am now meeting him every 6 weeks instead of every 3 months now. I have not been hesitant to push back on things he tells me and made him give me additional information, including citations to trials or expert opinions. I respect him and for the moment I trust his opinion about the radiation.
I did irradiate my prostate with SBRT on MRI Linac as it was my only CRPC spot and wanted to avoid local spread to the nearby organs. One of our member had multiple chemotherapies and still had SUV max of 85 of his prostate on the psma pet scan.
Even if that local therapy will not extend my life I will sleep better.
I really don't known what is the best for you, but ask for second opinion. You could also contact Dana Farber Cancer institute radiation oncologists for second opinion.
If you have infected lymph nodes than maybe an MRI guided linear accelerator like Electa Unity could be helpful. I have one here in my local Genesis Care in Darlinghurst in Sydney.
The issue as I understand it is the sheer number of mets that I have in multiple locations. My MO feels, and it makes 100% sense to me, that the cancer has already spread far and wide but just on a microscopic level, and since I can't have any systemic treatment I will have new mets soon, and may be a tumor or two. I could get a second opinion about all this of course. I have been researching the literature about this and it has seconded this view. I tried to find a trial that would be for oligometastatic cancer and they would not add anyone who had more than 5 mets. I am 3x that. And all of them except the one at my shoulder are adjacent to vital organs. I know that I will hear that the new accelerators and proton beam equipment with the best radiology docs and staff should be able to avoid collateral damage, I'm not personally willing to take that risk.
I am pretty risk adverse after my experience with ADT. QOL is my mantra now. Not extension of my life without the QOL I want. Many members of this group are more willing to go farther than I am. It's a personal decision. I am also very tired of the interruptions in my life just to get the treatments. I live 70 miles away from the nearest center and those miles have horrendous daily (including the weekends) traffic with frequent accidents which completely close the interstate. I do all my consultations on Zoom now. I would prefer in person but it is worth it to avoid the trips. They always schedule scans where I get out at 4:30pm right at the start of the worst traffic which means I have 50 miles of hell to get home.
I guess I am whining but this is where I am at. I'm on my second set of MO and RO. I tried to get another and can't find one that is acceptable to me. That's another long story that has angered me a great deal. I'm not going to go out of state to do any of this. I'm going to do other things with my time and money.
I understand, but maybe you could have a hybrid therapy. I have some more ideas like low dose oral chemotherapy which could stop the cancer growing but it is still toxic. My oncologists said that it could make me very unwell but I am now osteoporothic and I would like to stop treatment under the protection of low dose oral chemotherapy but that time would be very limited and I could end up getting onather cancer as a result of that treatment.
If you can afford you could just wait and you are still hormone sensitive therefore anytime you could beat your cancer, but we don't know for how long. You could change your mind. I was in big sciatica pain and it was for me easy to start treatment with Degarelix. You could also use Degarelix and than stop it.
After stopping Degarelix your testosterone will recover very fast.
I was very flexible and I moved 5 minutes walking distance to my hospital in Darlinghurst in Sydney.
If I where you I would also find mental support by a person who is cancelling cancer patients.
You can easily extended your life if you make a correct treatment choices. I can't advise you what exactly you need to do as I am not a doctor. Could you do some genetic testing just to see how aggressive is your cancer?
I wish you luck and hang around doctors and this forum. There is a solution you have to just actively work on finding it.
"easily extend your life"? That is a pretty global statement. I cannot, and will not, do any therapy of any sort which lowers my testosterone. It wouldn't kill me directly but it certainly would indirectly. End of subject.
I actually like Degarelix and my only problem is a resulting osteoporosis. It took 5 years to develop. If I an active and exercise I feel great. That is me.
I can't tell my story in short form as most of us can't. I decided once to take a vacation. Missed one injection. Testosterone went from undetectable to about 17 and PSA was still undetectable. Had a c-11 Choline Pet @ Mayo and it lit up like a Christmas tree. Kwon thought maybe the Cancer shed its PSA, decided I was MCRPC and offered Pluvicto. Got other opinions. Turns out the C-11 Choline was showing Plasmacytoma. Had a PSMA, still negative for prostate cancer. All of that was God awful frightening for me. I decided for me, vacation was never going to happen again, even thought the scan results were unrelated to Prostate cancer.
There's no cure on the horizon, only promising studies to extend life and I'm grateful for that but the ADT thing is over for me. I made it permanent and got the orchiectomy. Still on Erleada, and Onc says NOT CR but stay on the Erleada anyway because it's great stuff and stops the cancer cells from absorbing what little testosterone the adrenal glands produce.
swwags - so Erleada could be considered mono-therapy, allowing natural Testosterone levels as the cancer cells will be unable to absorb any of the T that goes floating by? Would this not get rid of the low T issues from ADT along with the subsequent castration resistant issues?
swaggs - so, with no clinical trials as a monotherapy, Erleada is unavailable to use as such? This would be too bad, as I would love to discontinue my use of Eligard (leuprolide) and all the wretched side effects from the ultra low testosterone. You would think that if Erleada can control PCa cell absorption of testosterone from the adrenals, it could also from the testes and would be clinically tried for such, opening up the natural flow of wonderful testosterone.
My vacation was due to bone deterioration and I’m glad to of had the vacation because I was me again. Got to go to my school reunion and see my classmates. 1/3 of us in that class are dead. Majority from cancers.
So here is my take. I don’t give a flying F. My QOL was spectacular for 8 months and My PSA increased. But before that I truly lived again. I finally could smell the rose. I’m so happy I got to experience that. No regrets including if I die sooner. After this Easter I’m confident I have eternal life and what’s the big deal in my head to feel so horrible of each and every hour if I can’t enjoy the last days of my life. I haven’t given up but I have No anxiety whatsoever if I die. Hey if 1/3 of my class can die of whatever so can I.
For now it’s taking meds and stabilizing my PSA and shoot for one more vacation. If not then I’m off the meds and party at home like it’s 1999. Looking at doctors eyes and their expressions says a lot. And their statements no one escapes alive. Got the exit plan all prepared for the wife as she in no way can take care off a small ranch. She will have it made in the shade. My children will live on and life will continue until the grim reaper comes for them. Today I live for today.
I also suffer from shrinkage and impotence. While I certainly enjoyed sex, I was willing to trade sex for life. This and other cancers are often just as much about facing a new reality and acceptance of that reality to allow us to obtain the right treatment and to enjoy life as much as possible for as long as possible.
I can understand how disheartening this can be. I did something similar five years ago so that I could get an Axumin scan to see what good the docetaxel and Lupron was doing. My PSA began to rise. I expected this and wanted it to see what else was happening in my body.
I found a lesion on my femur and a tumor near my bladder. This was not due to my stopping ADT, it was already there but undiagnosed. I allowed me to have the lesion treated and then I went onto Abiraterone (Zytiga) which has kept my PSA below .03ng/ml and my testosterone below 3 ng/dl to this day.
In my mind, being as informed as possible through your own research and talking with your oncologist or changing your oncologist if they are unresponsive to your queries. I also recommend having someone attend all of your appointments with you to assist in asking questions and taking notes. This is invaluable for tracking discussions and making decisions about treatment.
Like surgery vs radiation the decision to take a break is very personal. QOL is very important to me. After 4.5+ years, I'm on a 10 month medication vacation as I write. Yes, I expect it to come back and there are many things I can still do as a hormone sensitive patient. In the meantime L'chaim!
Good point; be informed! Stoping treatment for its own sake is not best practice for sure. In my case I had a period in 2022, 4 months after end of radiation, when PSA stayed in the ultra-low PSA range (thousands of ng/dl) and my TET bounced back to 300...then I was concelled to start on 24 months of ADT due to surgical anamolies; EPE with pattern 5 "noted." Pattern 5 was not in my pre-op biopsy or surgical report; straight 4-3 w 60% pattern 4, but my urologist said pattern 5 spreads by blood and that I should go on extended ADT. My RO disagreed at the time, but told me to proceed as I thought best...so I went back on ADT and made a decision to stop ADT in December, 2022 at 15 months as I had already had 6 months of ADT prior to sRT (salvage radiation)...in my mind I have already been on ADT for 24 months 'total.' Now, I did this in consultation with my urologist, who agreed this was a viable plan.
I still have to monitor my PSA every 3 months; so far its ultra-low levels...sadly my TET is not responding as it did when I only went on ADT for 6 months and 3 months after the end of the 15 month treatment period the TET is still at 3 (three)...but, I expected that and it will take time to return (up to 2 years). Also, I now see that, should I return to ADT treatment, it may not be necessary to take TET to zero, that keeping TET around 250-275 does not lead to progression of disease...it sure would make life better though...see my earlier posts on this.
So, that is my decision tree for the choice I made to stop ADT treatment. I plan on returning to ADT if my PSA comes back. Starting at ultra low levels I have some margin before I hit the panic button...also, I would like to think that, should I return to ADT treatment, that BAT treatment is an option as I have posted on this forum and that it appears its not necessary to be at zero TET...but that is a battle on a field that I may not ever need to fight; will only know as time goes by.
In closing, its not a good idea to stop treatment without firm justification and consultation with your doctor. There is risk that the disease is dormant and will come back and there is always risk that with ADT only the androgen dependent PCa cells are 'killed,' leaving the resistant variants alive and multiplying...its not a forgone conclusion that extended ADT will do this for everyone but its a risk for some of us. There are genetic tests that can be done to determine who will benefit from ADT; Decipher has that capacity...I did not do this screening and proceeded as my doctors had recommended. I am now taking a 'time out,' after careful consideration of my case and with consultation with my doctors...please if anyone does likewise know why your are doing it, talk to your doctor before hand and have a plan for what you will do going forward. Rick
IslandBoy2021, there is also a major chance that you would be at the same spot you are now even if you had continued your initial therapy. This disease has a way of developing its own way to progress. We pretend that we know how it works and it doesn't always do it the way we expect. That is why they do trials with as many guinea pigs as they can afford and find. And that is why they present result statistically. It is never black and white. Of course, you could be 100% correct in your observations and conclusions. Good luck with all.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Still ticking after stopping treatment
What should We do now?
Informal Poll Regarding Treatments Used for Stage 4 Diagnosis
Why finish Taxotere /Docetaxel treatment?
When ADT fails, we continue it anyway... why not Zytiga?
