Three years ago my dear friend was diagnosed with metastisized prostate cancer. Stage 8. Cancer had spread to bone but not to lymph nodes or organs. HealthUnlocked helped me, as primary support person, to navigate options, to formulate useful questions for our medical team, to anticipate treatment side effects. HealthUnlocked provided me with points of view and compelling basic data that led to much more vigorous advocacy than otherwise would have been possible. My friend was granted Compassionate Care status by the FDA, beginning Lu-177 treatments before the protocol had been officially approved in the United States.
The treatments were successful, but my friend never recovered from major side effects of the chemo given before the Lu-177 therapy began. My friend died in early December 2022, No one — including his MO — could pinpoint the cause of his death. It is my own sense of things that my friend rejected his vision of even the best scenario for his future. And I also believe a major component of that rejection was rooted in what seemed to be the irreversible effects of non-surgical ADT. He was accustomed to rising to challenges in his life, but ultimately felt no surge of energies to combat the loss of his vigor and curiosity and hope — the loss of his sense of self. I can’t speak adequately or eloquently on behalf of his decision to die; the trauma of his death takes away my objectivity.
Three months after my friend’s death — mid-February 2023 — my husband was diagnosed with prostate cancer that is classified as being contained within the prostate, but which also is regarded as being very dangerous because each of the two tumors is pressing beyond the capsule. We are finally at the point of having markers inserted in the prostate and also are receiving a hydrogel spacer, both of which will happen this coming week. After that, he will have 5 EBRT treatments. I haven’t been told specifics of the types of EBRT, although I’ve asked and have been told the therapy will include volumetric modulated arc therapy very much like Memorial Sloan Kettering’s MSKPrecise.
Our team of doctors is based at Cleveland Clinic. I mention this to counteract any extent to which what I write impiies a concern regarding competency. I’m not aware of having that bias, but to be honest I’d have to say my experience supporting my friend — at UPMC Hillman, with an excellent, patient, dedicated team — alerted me profoundly to the need for the patient/support person to bring pro-active participation to the table in every single decision that is made. In any event: we trust the doctors we have at Cleveland Clinic, and we also are aware of the necessity to remain vigilant and proactive.
My husband is a 75-year-old who still wears the jeans he owned in highschool. This speaks to how well he takes care of his clothing and how alert he is to avoiding frivolous spending … but it also indicates his rather extraordinary athletic skills, strength, and commitment to physical activity — from home and property maintenance to sports. The man does not sit still. His sense of self is connected to action and the pleasure it gives him.
I am very concerned about what part pharmacological ADT would play in his treatment. We’ve been told by the MO that ADT choices are his, my husband’s, to make. In the case of my friend, of course, there was no question but that he would not only immediately start Lupron and Zytiga and so forth — and that he should anticipate very possibly having to continue with them for life. But Paul, my husband, seems to have complete choice regarding ADT.
I need help in going into making such a choice with basic facts in hand. I realize this post is ridiculously long and I’m kind of mortified about that — but truly don’t know how to ask about this without explaining the background: I believe my friend died because he no longer felt he was who he needed to be in order to value staying alive. And I believe ADT played a huge part in that state of affairs. My friend’s chemo side effects were major, but what laid him the lowest was not that challenge, but the fact that he ultimately wasn’t able to muster energy to continue rising to it. His defiance in the face of the obstacle fizzled.
Paul has been told he can decide not to have Lupron. We’ve been told he can decide not to take any ADT pills. Does that make sense to anyone reading this? I hope to goodness it does because I’m terrified of those pills — but I’m equally concerned about rejecting whatever help they might offer. Can he take ADT for awhile and then go off it? Does testosterone production restart? Do side effects of ADT dissipate once one is no longer taking it?
If I were God, and a loving God at that, I would create a life for mere mortals with no more than a dollop of “learn from your mistakes” in the mix. Especially insofoar as that dictum applies to life-threatening illness. It does very little good to look back after one’s friend is dead upon the questions one didn’t know to ask because of one’s own ignorance.
Anything anyone can share about the broader story on ADT and its effectiveness and its consequence, would be greatly appreciated. In any event, please accept my most heartfelt thanks for creating this group, which offers solace and support to all.
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Been on ADT for 7 years this month, side effects have been tough but not so tough that I can't handle them, been some times I have wanted to quit but the women in my life need me and vocalize this to me on an almost daily basis. Same genetic defect(BRCA2) killed my father so I know it is inevitable. But as my women say "we aren't through making memories yet) and I soldier on.
Amen brother! It will be 9 years on ADT in October for me . I also have Brca2 gene and have been on olaparib for the last 2 years but similar to you my family is also not done making memories! I’m 63.
You seem to be comparing your husband's situation (who has localized PCa) with your friend's situation (who had metastatic PCa). This is apples and oranges. Your husband would have adjuvant hormone therapy= a limited duration of hormone therapy to help radiation therapy work better. Your friend had permanent hormone therapy to improve survival and lessen pain. Two completely different uses for hormone therapy.
It sounds like your husband is stage T3a, which puts him in the high risk category. You have nothing in the profile, so I cannot speak to any other risk features (PSA, Gleason score, cancer volume). For high-risk PCa, brachy boost therapy with a year of hormone therapy has the highest chance of success. Alternatively, he can opt for external beam radiation with 2 years of hormone therapy.
Your husband cannot stop and restart hormone therapy. That would select for the most resistant strains and make matters worse. Testosterone production restarts after he no longer uses ADT, but if he has low baseline T, it may not. In that case, testosterone replacement therapy may be possible eventually.
Thank you so much for responding and for sharing information with such clarity. I went back to Paul's PETscan results and gathered this data: - Prostate cancer grade: Grade Group 3 (Gleason score 4 + 3) in RIGHT apex, base, and transition zone. PSA 6,87
What has had us rattled, still, is the consult we had with Paul's initial doctor, a urology surgeon who did the biopsies and ordered the MRI -- after biopsy results came in, he called for a virtual meeting, and we talked about things like HIFU. A few weeks later Paul had an MRI and we had a followup consult with the urology surgeon in person. He rigorously laid out a plan to remove the prostate, nerve bundle, seminal vessels, and part of the bladder.It was an operation he wanted to set up quickly. We were stunned by the turbo-charging of the perceived severity. It still shakes me to think how caught off-guard we were. Fortunately, I'm all for second opinions, particularly when the first opinion is terrifying -- that is what led us to our current MO.
Evidently the PETscan, which Paul had this past Monday, showed no cancer cells outside the prostate. My sense is that the proposed radiation protocol is quite precise. If, in fact, ADT assists radiation effectiveness, then of course Paul would want to do that. I won't be able to stop myself from asking questions about that assertion. However, it helps me (and Paul, as I share your thoughts with him) to know from your comments that the ADT would be given an, at least strongly anticipated, end date. You are the first person in all this trauma who has made that clear.
Thank you, again, for your help! This has been a bit of an emotional rollercoaster and your thoughts are very steadying. You can't imagine how grateful I am for that.
Is HDR-BT the same as HDR-BT Boost? I just completed HDR-BT and I’m getting Firmagon for 6 months total and not a year. Is this something you think I should question?
Tall may have better answer, but HDR-BT is high dose radiation brachytherapy. It is a boost when it is added in conjunction with radiation therapy such as EBRT.
Ok, I too had MSK Precise. SABR at Mem Sloan Kett in NYC. My PSA has dropped steadily ever since Jan 2022 (16 mos ago).
Prostate Cancer contained within the gland is 99% curable. Your partner should be good.
It has been reported that up to 30% of Men on ADT2, and ADT3, will die of cardiovascular disease and not PCa. Your friend may have fallen into that category, but any autopsy would reveal that. Some of us make the decision to take matters into our own hands when everything has failed and the thought of being a burden to friends or family is too much to take.
Sorry for your loss, this next chapter should end well. All my best, Mike
Your reply makes me tear up -- thank you for understanding how the two scenarios, though so very different from one another, become entwined to create a single nightmare. Thank you for reminding me of how very different they are. Thank you for your generosity, All the best -- Cary
I find it astounding that your RO did not discuss the duration of ADT with you, and what your hubby might gain (in outcome) by choosing to accept the ADT in combo with radiation> it increases the odds of long-term success.....but RT without ADT does work for a lower % of men....which means a greater chance end up with lifetime ADT.
Frankly, I found that astounding as well. The part of me that's an eensy-weensy paranoid felt as if the issue was being dodged in order to maintain a blame-less neutrality. When I look back on that initial consultation, it was much more about facilitation of our (my husband's and my own) untrained observations and much less about being given expert guidance.
I have been on ADT from the first diagnosis with Gleason 9. I look at it as a shortcut to how I would be if I was 5 years older - and to this day I have trouble differentiating supposed side effects from what I should expect from the natural ageing process (I am 72). But I have an active life, no cancer symptoms, and the ADT has taken me from a PSA of 1000 to todays stable 0.1. So I have no testosterone - so what - I have a great and active life. I have to handle more fatigue than before - but as my family says to me - dad - you have to remember you are 72 and not as strong as you used to be. So dont be afraid of ADT - life can be just as good with it.
I joke about the positive effects of testosterone are overrated. Training effects are different but I can work around them. I seem to be a lot less unpleasant to be around, I'm told...
Whatever you decide, do not fear ADT outright. It can be challenging, but it works well for its intended purpose. Not comparing your husband’s situation to your friend’s is wise. Not only is he at a different stage, but his commitment to being active (which your friend may or may not have had) is very significant.
Those who are the most active are far less likely to struggle with ADT side effects. I experienced nothing more than typical loss of libido and increased frequency and intensity of exercise (especially weight lifting) to counter the sarcopenia. Radiation followed the start of that.
In all I did 18 months of ADT with little difficulty. I was a similar stage to your husband, and I am enjoying a remission/possible cure 4 years post treatment at this writing.
Thank you for this. It's very helpful information. We need to have clarity about the situation and recognition of what is most helpful. Cleveland Clinic has surprised us with the sluggishness of its scheduling. It's alarming to be told, so far, by 3 of their oncologists that Paul has a quite aggressive cancer, followed by (so far) a 6-month delay before receiving any treatment whatsoever. The information you've offered and other replies received on this network allow us some proactivity regarding actively pursuing ADT. Well ... that, and the proactivity that keeps me at least one step away from bursting into flames and flying around the room backwards. 🙃
An ADT perceived positive is, it doesn't allow the testosterone to feed cancer.
Maybe radiotherapy will be enough to get him to where he wants to be???
Good to have a god and a faith to help.
Sounds like that one you got though, has some answering to do? Them type gods always seem to take the credit for lovely stuff, but somehow only hold a hand, or walk along side when its the awful stuff?
For me it's been a year of messing about with doctors, fears, treatments, loss of liberties and massive changes.
But there has also been a year of support, friendship, love and unexpected loveliness???
Try not let the fear
Or the history of your friend guide you.
I hope you guys get a good outcome
Sounds like your starting of well with space oar gel.
I was told it was going cost £6k and it lasts 30 days, meaning X2 for me.
Thank you so much for your thoughts -- they read like poetry with wit and passion and compassion. (And they make me terribly grateful that our Medicare will cover the costs of the hydrogel!)
After a diagnosis of gleason 9 prostate cancer contained to the prostate I began Lupron treatments right away, in an attempt to shrink the tumor in preparation for beam radiation treatment. I’ve been on Lupron now for ten years with one fairly short vacation quite a few years ago. My current treatment is a combination of Lupron, Zytiga and Prednisone. While I’ve had the expected side effects of no libido and erectile dysfunction I’m getting along fairly well with ADT. Sometimes I experience low energy and diminished memory, but I’m also 72 years old in body (and 25 in my mind).
The upshot of my note is that while I would prefer not to be on ADT, it isn’t a horrible experience.
About 6 years ago my PSA skyrocket and I was advised to get rid of my prostate. In the 6 weeks after the biopsy my cancer had burst out of the prostate. The prostate was removed and they also removed the lymph glands that were around prostate and hoped they had removed all of the infected ones.
They must have missed one of the little buggers because it spread from the lymph system to the blood system to my torso bones. after a dozen hits of radiation, they said I had about 50 little bone cancers with a major one in the shoulder and hip. I was advised to get my afferes in order because I maybe had 6 months.
Anyhow they put me on 6 monthly injections to reduce my tostorine and that worked for 5 years. Then my psa started to rise again so now I am on Zytiga and my psa is dropping again. I have been told there are two or three more treatment options. And I could live for anywhere from 3 to 30 years.
I am 75 and otherwise reasonably fit. Still ride my harley ( had to downgrade from my M8 Lowrider to a 1200 sportster because of the weigh.) and I have gone back relief teaching for 4 days a week. Wednesday is cancer clinic and doctors day.
I have lost a fair bit of strength but I keep going.
I can only offer support from our personal experience. My husband was dx in 2014 (age 67) after routine blood work for a new PCP who called immediately when PSA was found to be 18.... led to robotic surgery. We were told not to worry, no further treatment, surgeon "got everything." Our lack of knowledge about PC then was regrettable. In 2018 PSA was found to be 6 during ER visit for kidney stone...referred to urologist who said wait and watch. We transferred care to different doctors/hospital and he was started on Lupron when scans showed bone metastases...I also had to scurry around to get slides/scans from previous tests/surgery. PSA continued to double. He was started on Xtandi which had multiple SEs of varying degrees including fluid retention that complicated his cardiac history (silent heart attack, blockage, stent, implanted defibrillator), terrible restless leg syndrome, lethargy, loss of muscle mass and anxiety, etc. He, like your husband had been very strong, fit, active and athletic and the fatigue overtook it all. The Xtandi bought us extra time, I have no doubt, but the SEs were debilitating to the point that his dose was cut from 4/day to 3, then 2, then 1. After PSA was undetectable for a few years, last Fall his PSA starting doubling every 3 mos. At the start of this year he began having trouble standing and walking and ultimately decided to stop the Lupron/Xtandi. SEs diminished except fatigue. We see the MO in July. During this time he's suffered minimal pain, but it's starting to present where we know he has lesions. While he's had a rough time with SEs I know others don't and would encourage your husband to at least try what the drs. offer. It's really about how much one is willing to tolerate while seeing results from treatment....as well as age, overall health and individual quality of life requirements. The disease keeps changing, brain fog/memory issues develop, decisions keep being needed...I hope your husband is one of the lucky ones to improve and stabilize!
I have wanted to respond to express how moved I've been by your experience, you and your husband, in handling his cancer. Each corner turned while traveling that road represents so much rising to the occasion and hoping for the best and seeking a safe haven. This is so blindingly none of my business, but I am wondering if you have looked into Lu-177 infusions as possible treatment. My friend who passed away this past December had received three of the planned six infusions. That he died before continuing the protocol does not imply anything negative regarding the treatments. His PSA before the first infusion was 785. His PSA after the third infusion was 75. His bone mets were healing. Hopes for the future were high. The night on which he died, his Medical Oncologist and I sat together in the hospital room and the MO said he had no idea why Ron, my friend, was dying. My point is only that the death had nothing to do with the Lu-177, which was doing its job very, very well indeed. I wonder if it is a treatment option you all might consider. In any event, please know I am thinking of you across the vast distance of unfamiliarity, but also from within the close community of those who fight for and pray for and live for the people they love.
Thank you so much for your suggestion and kind words. MO hasn't offered that and knows his complicated health problems. My husband thinks she's annoyed that he refuses scans to "restage" his cancer but he finds them intolerable because he can't lie on his back for the duration due to pain and breathing problems from his CHF....he had to stop the last one he tried over a year ago. He's made the decision to give up on further treatment because of all the SEs he's prone to and because of the fatigue that he believes has also weakened his heart further. His prognosis at this point is about a year as we were told earlier this year but hope to learn more after seeing his MO and cardiologist in the next few weeks after blood work. Wishing you and your husband all the best!
Let me start by saying that ADT is not fun, but tolerable. I was diagnosed with Gleason 8 (4+4) with a tiny (4x4x3mm) tumor contained within the capsule. PSA 5.6 and strong PC family history. Decipher score of 0.73 put me in the high-risk catagory. At age 77, I decided on 5 SBRT treatments with adjuvant ADT. MO recommended 1 month of bicalutamide and 6 months of lupron, both of which began after my second SBRT treatment. NCCN recommendation for high-risk PC is 4 months of bicalutamide and 24 months of lupron. I decided to split the difference and do 2 months of bicalutamide and 12 months of lupron. I am currently in my 10th month of lupron, so no outcomes to report yet. My advice is to keep reading peer reviewed papers and seeking feedback from those who have cases similar to your husband’s.
ADT is a robber, a thief in many ways. Extended ADT can really bring a man to his knees if all the wrong forces align. It adds unwanted misery to a disease that has already robbed us of our 'quite enjoyment' of life; many of them final years which should otherwise be spent worry less and free...but that is what it is...now what do we do about this cursed affliction and its treatments?
ADT can weaken tumors and make them more susceptible to radiation treatment, especially salvage radiation (sRT), BUT what length is efficacious and who needs it? This study may interest you. It compares High and Low dose RT alone, then in combination with long and short term ADT. Look at the extended table of results; there is no benefit from ADT use other than Low Dose RT with Long Term ADT! Otherwise its a wash...EBRT is not low does radiation (correct me please). So I dont see where the benefit is derived for ADT pre RT, even 6 months. Here is the reference;
If he is treated with EBRT and the PCa recurs (his PSA comes back), then long term ADT is going to be broached...that is the real hazard in my view here and what really takes the life out of living...as you eloquently described in your friends case. AND I am convinced that only when we 'give up,' does this cancer do its best, or make some other medical complication flare into a deadly threat. I agree that we must guard against despair, and its despair that does us in. When we despair we lose hope and at that point why bother going forward...
So if I were your husband I would think hard before using ADT at all...it also damages his penile tissues (more on this if needed). If he must use ADT then he like me is in good shape. Tell him to work out with weights 4-5 times a day and exhaust himself; its the best antidote against ADT. It really works! Then after EBRT he can decide whether to continue ADT treatment.
But, if your husband had not had Genomic Testing of his tumor and only has a Gleason score then he does not know how risky the cancer really is...he needs something like Decipher to understand that. I have said before, its like knowing you've been served ice cream, but not knowing its flavor...or understanding your on the 'PCa Bus' but not knowing its speed...get Genomic testing to better understand what cell type you are dealing with. Decipher can also tell his Doctor if your husband will even benefit from ADT use! Here are good references; there are others.
That would be my take, what I would do should I be able to 'do it again.' Other than Low Dose (salvage radiation post RP) + LTADT (long term) there appears to be little statistical benefit from ADT. Also, unless I had a high risk PCa cell type I would not risk ADT treatment. That would be my take on what I would do, if I were you...Rick
Lift weights can mean different things. Can you explain? My husband started Orgovyx & Zytiga one month ago. MO stated lifting weights and walking 30 minutes would be extremely beneficial. I’m trying to urge him to begin but I think the ‘where to begin’ is the hardest part. He’s 48, Gleason 9, spread to pelvic lymph. Will undergo 5 weeks beam in August followed by brachytherapy a month later.
Since he just started ADT, it's important to start lifting and walking. ADT leads to muscle loss, and it's a battle to keep what you have. Are you near a Planet Fitness? They are only $10/month. Maybe try a trainer for a month to get started. It's really important to get started, and once you get into a routine, he will feel better in general.
Here is what I do...the 4 day per week routine is a Whole Body exercise regime. Each day works a different part of the body. In that way you are giving your muscles a full week to recover. There are a couple repeated types of exerises, but in general this is the plan that I follow.
When I started this routine 2 years ago I was coming off surgery, followed by 6 months of ADT, followed by IMRT sRT (salvage radiation). At that point I had done nothing for 18 months...it was a devastating day for me at the gym, one I will never forget...I was so glad that I skulked away to try to do push ups and lift some dumb bells out of site of the other men...at the time I started I could not do 1 (one) push up; could not lift my body off the floor even once. Then I tried doing a dumb bell press; could not lift 10 pounds more than 10 repetitions; could not believe how weak I was! Embarrassing as I had always been fit. But at that point I was about to start on 2 years of ADT and I was warned; start resistance exercises or suffer the full effects of ADT plus risk bone and muscle loss...from what I had already experienced, I did not doubt my Dr or what I read.
So I hit the gym Mon, Tue, then Thu and Fri. How much are my gym fees? Nothing, I use my garage! I am retired so I start at 6:15am and ride 3 miles with my wife...when we return she goes to the garden and I to the 'gym.' I put on ear buds and catch up on audio books, news, even listen to podcasts on PCa...whatever. A great way to focus on what you like and get a work out. I am done at 8:00 am (latest 8:15 am)...the entire day is then open to other activities.
Each daily routine lasts 30 - 45 minutes; not long at all. To start pick a weight and try to do between 8-15 repetitions for 3 -4 sets each. If you can do more than 15 repetitions go up on weights...its important to note, the goal is to fail during the 3 - 4 sets, not to lift 300 pounds! If you can only do these exercises with 5 pounds in each hand, and 5 pounds makes you fail between 8-15 reps, i.e., you cant do any more reps, you have achieved your goal! In fact, better to fail at low weights; easier to manage! Then as you get strength, and you will get stronger, you just go up on weights. Dumb bells are best I think for men over 50 as it works both arms separately, improves motor control and is easy to set up and maintain...buy any type of dumb bell sets; start with low weights, then add heavier ones as you get stronger.
Leg exercises are also important! The lunges, squats and deadlifts really help keep the lower part of the body in shape! I had knee pain climbing stairs, until I did Deadlifts...this strengthened the muscles around the knees, locking them into place, reducing my pain substantially. I can now climb stairs without the hand rail and have no pain...I could go on, but you get it.
I attach my work out routine with LINKS to the Web site that shows technique...super important to follow the technique as that 1) prevents injuries and 2) isolates the muscle/ group of muscles you are trying to improve. If you can afford it, get a trainer. If you prefer, go to a gym. There are many packages that are cheap; its not costly and you dont have to buy the dumb bells...but if all that bothers you dumb bells are in expensive and if you have a garage, or covered area, you can make you own work out area at home...easy. The LINK’s don’t work in the JPG but the web site where all these can be found is; strengthlog.com/exercise-di.... If you would like a PDF with the hyperlinks included I can send one separately…just contact me at rickmontanari@hotmail.com.
Is this work? Yes. Will it be easy to start and maintain? No. Is it going to challenge you? Sure...but we have Prostate Cancer! We have the ultimate challenge in front of us. It appears to me that the stronger you make your body the better able your entire system is to a) use the medication we are given to its best, b) recover from its side effects and 3) maintain vigor and energy despite being treated to all manner of debilitating medication, radiation, hormones and what all...if we do nothing the side effects of all that treatment pile on and we feel worst than ever! I really don't see we have much choice...but, I know not all men can do resistance training...but if its at all possible, if you can even try to start, you will like it and the days you miss a set you will look forward to returning; sounds nuts but true.
So, hope this helps...a bit long, but I wanted to double and triple down on what I am recommending; resistance exercise, plus cardio for sure, is the best medication we can take. I cant count the number of podcasts where Dr's state that, "if we could make exercise a medication we would prescribe it to everyone." Well, its not. Its a choice and one that should be taken, tried and implemented sooner rather than later. Rick
PS there are two links in the work out table attachment; try to watch each. Its amazing how doing nothing destroys bone density and causes muscle loss...just sitting there. We become 'Astronauts' in our 'inner spaces' withering away as we age. Resistance exercise is key to preventing these loses...take a listen if you can via the Links I pasted. Rick
230613 IMG Health Exercise Resistance Training Guide MMeucci
it wasn’t obvious to me because lifting 5 times a week is too much for most people. Especially older people. Yes it can be done if the sessions are short, not too intense etc but it’s inefficient and vastly inferior to getting more done in less time.
Also, if the equally greater need for cardiovascular exercise and some form of stretching is factored in, the total time invested is seen as either unattainable or crazy to the uninitiated, deconditioned etc. I know you mean well but the suggestion of that many days lifting can easily be more intimidating than encouraging.
…will publish a more detailed plan later. But definitely an investment of 4 days a week w resistance training is totally possible. U don’t need to lift 300 pounds. It’s repetition and picking a weight that tires u that counts. If u don’t then bone n muscle atrophy. Will make this more clear.
What should concern us is the thought of doing nothing while on ADT…that scenario is far worst. When I started my training I could not do even a single push up ( not once) and could not press away from my chest even 10 pounds! I was a wreck after 2 years of surgery, radiation n ADT…that is what I want to avoid at all costs. So yes it’s possible and salutary to train 4 times a week. Will show u what I do later today.
I didn’t know you were starting from that level. Good for you.
Of course it’s possible to lift 5 days a week. My point was that it’s not practical or advisable to many. I had been an experienced lifter and competitive athlete for many years before my diagnosis, one of my few good lifelong habits. I have probably tried most training routines and schedules, and I won’t deny lifting 5x a week can work. I do know you can achieve the same results in less time.
Still, whatever feels right and inspires the individual always counts more. And your statement ‘What should concern us is the thought of doing nothing while on ADT’ is front and center of most of my posts and replies on here if you have come across any. So we are certainly in complete agreement that ADT induced sarcopenia is a hideous scourge among Pca patients- but doesn’t have to be.
No ‘you don’t need to lift 300 pounds’, but you don’t have to lift more than 2-3 days a week either. There are even 1x a week lifting routines that reportedly work for some.
What has changed for me as I’ve gotten older is re dedication to cardio. I was an elite distance runner when young and gave it up to play sports (and lift) in my 30’s. Now it’s a balance of weights and low/high intensity cardio since heart and circulatory health becomes more essential with age.
Sets, reps, amount of weight are all individual choices. Mixing them up brings the best results. By all means share what you do if you like.
I would think the new Psma scan would be my first investment. I’m sure insurance would not pay for it but to California I would be going. Not sure it shows if cancer is outside the prostate but I’d give it a chance to live up to what everyone says it will do.
I have been on ADT for 11 years following my diagnosis of metPC in a few bones at age 54. Everyone responds differently to ADT because none of us are the same. For me- ADT has had many unpleasant side effects: loss of sex drive, weight gain, “manboob”, night sweats, …. Having said that- I am happy ADT exists or I no longer would. And, I would be happy to stay on it, if it remained effective, for another 11 years.
In my case having EBRT, and then HDR Brachytherapy and two years of Lupron.I was G9, aggressive, marginally stage IIc at psa 20.6
The side effects of radiation were zero! Lupron had lower energy, hot flushes, and low desire for .. Energy I handled with gym time, hot flushes were no big deal. Last one too some effort.
For the past two years I have been back in Lupron and added NUBEQA. All the same side effects.
I need to say he needs to understand the boost effect of HDR makes the radiation more effective.
Lupeon shrinks the tumors and help the effectiveness of radiation.
Please understand with Cancer the worst Stage is 4 and dangerous isn't used to describe it, aggressive is the correct wording.
Both of you take a series of deep breaths, relax, and celebrate your lives together. I am in my eighth year and doing very well.
Thank you! We are currently in a bit of a scheduling nightmare with Cleveland Clinic, trying to kickstart the process of prep leading to the actual treatment. Which is an alarming state of affairs, but at least we know now to go ahead with the ADT ... not that anyone at CC is explaining how to do so, but I feel certain we can make that, at least, happen. Again, thank you for your support and help.
You are welcome. With CC be a bit direct seeking answers. That said I was told after my diagnosis that even though G9, aggressive, I had time to plan and start treatments. Took a month of Bicludmide before Luprin and another month before external radiation. Both surgeon and Chief RO said the same thing.Be Positive in Attitude!
OK. That helps a good deal! We will focus on starting the ADT as soon as possible. And I appreciate the suggestion regarding being direct. No problem ... I am, frankly, stunned by how readily available I find that skill. I only wish I were the one with the prostate cancer in the family, since being "the wife" and also being willing to be persistent is effective but not totally welcomed all 'round.
Hi Support P. Your fifth paragraph describing your husband is extremely well written (it all is, but that hit me). It captures a bit of what I value in life as well. Purpose and physical capability. I was a little further down the road when we discovered my PCa. I had the robotic surgery as we thought it would be contained. Incontinence was permanent and a real ego hit. Two years later, my PSA, never absolute zero, started rising with a calculated doubling time of about 6 months. We caught it right at the rise and when it hit .2ng/mL we initiated 25 rounds of EBRT, and Cyberknife to hit a small area on the T11 vertibrate that showed gallium uptake on a Ga/PET scan. ADT consisted of Lupron and Zytiga (Abiraterone) with prednisone. I'm coming up on two years on Lupron (will go for a third) and a year and a half on Zytiga (6 mos more on that).
Long story. The muscle and drive loss are real, but preventable if he's anything like me. I live in the Santa Cruz Mts north of Santa Cruz Ca. We typically cut and split wood for heat. It's extremely high intensity. I do it by hand, not a mechanical splitter. Rounds can weigh 200lbs and cracking them requires physical strength for sure`but a lot of cerebral input to manage these big chunks into little ones. I say all that because yesterday, even after two years of ADT, I managed to produce about a cord of oak/madrone over a 4-5 hour period and feel fine today. That's as much as I did the day prior to my surgery when I was really working hard to be in great shape, no ADT at that time.
The moral is, I was afraid of ADT and all the side effects. But I wish we'd started them at the time of surgery to protect against what ultimately occurred. In the beginning, the sides take a second to gain one's bearings. But the decision to remain active is a personal one. If he's active now, there is nothing preventing him from maintaining that activity through ADT. It will feel a little like he's walking up a hill at the beginning, but watching diet and staying active, particularly with some form of High Intensity Interval Training (wood splitting works for me), and taking on mental challenges of all kinds (restoring my '96 LX450 and learning new things) keeps the brain nimble. Listening to oneself through the process, giving space for time to adapt, not getting upset about near term changes that the body will adjust to really helps.
It does help. A lot. You have been so clear in describing your own situation and the role of ADT in wrangling the disease. And your description of wrangling the ADT itself is wonderful. It will help Paul choose physical activity and levels of that activity most able to keep him strong. (He is, BTW, the one person in our neighborhood who chops his own wood )
you are a very bright and relatably (trust me, I have a poetic license) empathetic person. I hate typing and do better with phone calls. I'm 72 and in January 2021 my PSA (monitored via active surveillance since my 2011 diagnosis of PCa) spiked to 11.2 and I started on hormone therapy (Eligard) and then in April-June 2021 had 15 sessions of SBRT (cyberknife) at Swedish Hospital (best in the nation) to "zap" my prostate and the metastasis to my ribs, sternum, and tailbone. I had my last hormone shot November of 2022 and continuing with quarterly PSA's. I'm still experiencing the side effects of hot flashes, zero testosterone, and low energy (been told it could be as much as 12-18 months before I can become a normal dude again), but PSA remains undetectable. In addition, I had cardiac stents inserted last December and May. I am back to playing racquetball every weekday at 6 a.m., and it's great not having to pop a nitroglycerin between games. If you are open to a different opinion, I would have your husband consider treatment by SBRT or proton therapy rather than EBRT. During the decade between my PCa diagnosis and having to decide upon treatment, I thoroughly researched every option. Happy to discuss further. I think your husband will have little problem beating cancer, especially with you in his corner. Happy to talk with you guys off-line. Criminy, I've never typed this much in my life. Godspeed. clg
First of all: Have you played Elwood P. Dowd? Second of all, thank you so much for your concern and clarification of so much that we're now facing. If Cleveland Clinic ever gets its scheduling capabilities in gear, Paul will receive markers and hydrogel in prep for his radiation. I believe the treatment proposed is 5 days, over 2 weeks, of a precise, modulated arc therapy and I have absolutely no idea whatsoever regarding the nature of the beams themselves because our MO equivocated in response to that question. And, yes, I am cranky about that. However ... I am grateful for your generosity and help. And speaking as one who has played Veta, I think you'd make a wonderful Elwood.
I had a very similar diagnosis, G9 localized to the prostate. I had 25 IMRT treatments followed by low-dose brachy and 13 months of ADT in conjunction with the radiation treatments. Regarding your questions, from my personal experience:
Can he take ADT for awhile and then go off it? I did and so far my PSA has remained under .1.
Does testosterone production restart? Mine rebounded within about 3 months, though it seems to be bouncing around somewhat.
Do side effects of ADT dissipate once one is no longer taking it? Mine largely did, though there are some aftereffects still lingering after 16 months off ADT.
BTW, my older brother also has PC and also is being treated by the Cleveland Clinic, though not in Cleveland, and is doing fine so far. 🦊
As the daughter of a man that NEVER STOPS and is going to be 88 on 7/7...and has had prostate cancer for 16 years...AND did ADT for around 12 years...I can only attest to what my father has experienced.
He never lost his drive, stayed very active, worked out at the gym I co-own with my husband, golfed, traveled, and bought a new Corvette 4 years ago. He loves life, and only in the last 2 years, has the cancer spread to his bones.
He has never done Chemo.
Recently did the Lu-177 that did not work.
Is now on Zytiga and Prednisone...and STILL travels, drives his vette, and has adventures to look forward to with my mother and our family.
He has lost weight due to nausea, and has been taking THC gummies for 3 years ( a THC/CBN) combo during the day for a pinched nerve in his lower back that the pain travles to his leg) and takes an indica THC gummy at night to alleviate the pain.
He gained belly fat and had sensitive nipples while on ADT...and was always a small man with a fit body.
After the ADT ended, and small tumors were found, he did radiation on his spine, and the LU-177 for a bit...that did not work.
Now, he's gained a bit of weight back (after losing about 16 pounds in the last 2 years) but is STILL active. STILL mentally loving life despite his pain...but rarely complains.
I think he's somewhat in denial about the state of his cancer and RARELY talks about being a cancer patient.
I pray that this post keeps you all in a positive mindset as I TRULY believe that my dad's mind is stronger than his cancer...
I haven't waded through all the lengthy replies to your post. He should definitely have ADT, even if for a limited time like 3 or 6 months. It will help shrink the tumors and sensitize them such that the radiation treatments will be more effective. Good luck to you both.
Until something better comes along ADT is the universal adjunct to RTI. The literature is clear on survival outcomes with and without ADT. Tall-Allen can provide comprehensive advice depending on individual circumstances. It appears that your husband is receiving up-to-date care. The aggressiveness of treatment should be discussed with your doctor. I experienced 12 months ADT and am relieved to be over it. However, the side effects of weight gain and loss of muscle strength are significant. I have regained strength and continue to try to lose the extra weight. I have zero interest in sex. I have a caring loving relationship with my wife. I am glad to still be alive. Good luck and be positive.
Thank you so much for your reply to my interminable post. I wonder if you feel Lupron injections were essential. I'm trying to figure out whether oral ADT alone might, in certain circumstances, be sufficient. Thank you also (and as always) for your humor -- you have lifted my spirits today.
As you know I am not a doctor but as I've said before, I do look handsome in a white coat.
To answer your question regarding "if Lupron injections were essential?" I'm the type of paYtient who really can't respond to that question because I do exactly as the doctor(s) ordered since they're the ones that get paid the big bucks.....
However, I'd like to tell you about the man who comes home from work and asks his wife if she would like to play "doctor and patient".
The wife is thrilled and says "I'd love to dear".
Husband says to his wife, "well I'll be the doctor and you'll be the patient."
The wife is even more thrilled and says "okay dear".
So the doctor left his wife sitting on the sofa for two hours....
Just so you know ... I played the first female President of The United States in a fully produced professional production (say that 5 times, fast) a few years back. I'm pretty sure that gives me the credentials to question anything recommended by anyone whatsoever, including all medical decisions, including haircuts and sock colors of physicians. 🙂
I said "that" 5 times fast (was a walk in the park)..... President Caitlyn Marie Jenner - (Hail to the Chiefete)...Socks? You mean they wear socks? I recommend that we all vote for you as Ms. Support of our group.
OH BTW I once played U.S. Vice President, Spiro T. Agnew on the stage in an off Broadway play named "Pocket Change"....................
I was 76 when diagnosed with psa 9000 and Extensive Mets mainly in large bones and skull and minor in lymph nodes. I had got that far along because I had only minor back pains only recently some sexual problems. I starte on Gosalerin and Casodex and within 4 months psa was down to <0.05 and lymph node Mets were resolved and bone Mets less evident on body scan. After 12 montths Casodex was changed to Enzalutamide. This penetrated the blood brain barrier within 3 months and was changed to Zytiga in April 2018. I have been on that since. 5 + years. I had some exhaustion early but diminished with exercise. I have also had 3 monthly Denosamab. I had a fall whilst power walking in Jan this year and broke 3 ribs. The CT scans reported some hollowing of ribs where they have healed from metastases. My psa has risen slowly to 0.28.I have no worries about side effects of Zytiga and will use it until I die or it becomes ineffective. My qol is excellent. I sleep uninterrupted for 8 hrs a day. I have happily given up my sex life for many healthy years. My wife and I are both 63, been happily married for 62 years and help each other in all activities. Having 4 children 5 grand children and 3 great gamy nearby is certainly a blessing.
I am not a doctor but I would SBRT my prostate with a high precision MRI guided linear accelerator like the Swedish Elekta Unity and would not take ADT.
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… but it also indicates his rather extraordinary athletic skills, strength, and commitment to physical activity — from home and property maintenance to sports. The man does not sit still. His sense of self is connected to action and the pleasure it gives him.
I would appreciate a referral to a doctor at Stanford or USF
Ongoing BCR case. Advices are appreciated.
Decision time – looking for opinions/advice please
Advice and Opinions would be great.
