This is the quick stop to check on my current overall health. No one wants to go through pages of posts to get up to date if they’re new or have been away for awhile.
I’ll update this page as major changes in my situation occur. For the day to day stuff, reading the last few posts should do the trick.
Overall, I’m OK, but I now have a significant limitation. Two tumors on my spine produced a compressed spinal disk and I’m now basically paralyzed from the waist down. On balance, I’m in good spirits with no bone pain.
I am at the point where the Zytiga I’m on has started to fail. It’s a third line treatment after Lupron fails. Quite frankly there aren’t many options after this.
As of January, 2019. The oncologist gives me six months to one year to live. I am fortunate that my cancer hasn’t spread to my lymph nodes or any organs. If the cancer metastasizes to a “bad” location, this estimate is out the window.
Yet Another Prostate Cancer Blog 
Wow…thankyou for writing. Much love x
I just wanted to thank you for reading my blog. I am not very good at replying to comments, etc, but it does mean a lot to me and makes me feel less alone. It makes me feel heard. So thank you. All the best.
I’m curious to know how much of this the doctors took the time to explain to you versus from your own independent research. You’ve clearly thought about this and have found a understandable way to explain it. It’s really pretty remarkable.
The docs gave me maybe 25% of it. In getting the remaining 75% I had three things in my favor. First, I have a Ph.D. in Electrical Engineering. My thesis topic was a branch of applied statistics called artificial intelligence. So the internet research, if-then analysis, and statistical side of this was a piece of cake. Second, I spent most of my career selling software research and development projects to people who didn’t understand anything about what I was selling – they had been told by their management that maybe they needed some and should check it out. I committed myself to making all of my pitches understandable to a sixth grader, unless I was positive they could be more advanced. Even then I found simpler presentations almost always did better. Third, I’m the one with this disease. No one knows how it’s affecting me better than I do. No one has a more vested interest in understanding what the truth really is. Sometimes I question if I should just let it all unfold, but I’m just not that kind of person.
I was a software guy for many years, and I discovered “cellular automata” in 1970, in a Scientfic American article by Martin Gardner on John Horton Conway’s. Years later, while working at Princeton in software, I got to meet Conway and attend some of his talks at the then “John von Neumann Supercomputer Centre”.
I also have read Stephen Wolfram’s book “A New Kind of Science” where he finds broad application of cellular automata (sets of cells, a starter pattern, and the rules needed to generate the next pattern) to all sorts of biological and physical phenomena including cancer.
I find that upper alpha and beta sorts of people are the ones with long survival rates in prostate cancer. Like you and me, they are smart guys who take daily responsibility for their health, living one day at a time.
I think that in a very broad-brush, holistic way, we might say that these cancer sufferers marshal their body resources, all of them stored in the cell and interacting in complex yet deterministic ways with enemy cells which can’t be recognized as friend using friend or foe rules.
The cancer community needs to research a more formal application of these ideas.
I probably don’t take as much care of my health as you think, but I am proactive. I totally agree there’s reason to further research the holistic side of cancer.
Interesting! I was a marine engineer, later a rehabilitation counsellor. I still look at things from an engineering perspective. I like your analogy, “psa is cancer cell excrement”. Cruising is good for the soul if not the bank account. I just need to pick 6 numbers on the right day and I can cruise again! Meanwhile we have memories.
I am a new reader to this article. In this post you state that you are not going down the chemo route. Was there a specific reason or situation where that route is not desirable for you? Your analysis of all of this is amazing and I wish most people would read this to help them find or understand the “internet” numbers, which for most of us, scared the hell out of us at first.
I’ll be watching your posts and keeping my good thoughts going your way. Best wishes
-Randy
My understanding is that for prostate cancer chemo is pretty much the last resort. The chemo treatments provide one, maybe two months of life extension, but one feels terrible during this time. They can be strung together to further increase lifespan, which is a plus. Remission, as I understand it, is not an outcome one can hope for from prostate cancer chemo therapy. One is simply deciding that to live a little longer it’s worth feeling bad during the whole period. I would prefer to live a shorter time, and be more able to enjoy my family and friends in the time I had left.
Thanks for your many kind words about the blog. I hope you find it helpful.
Positive thoughts and prayers coming your way! Is it possible to ask an engineer to concentrate on each day’s new possibilities and not dwell on the number of days left?
That’s a tough one for me, but I keep trying.
Haha, the engineers I know would probably have charts of their progress hung on their walls! No offense at all, just a funny side effect of your work! I retired 22 years ago to have/raise my kids, so all the work side effects are funny to me! Geez, I wonder what the side effects of being a stay at home mom are?
Good for you for keeping in touch with other bloggers and having the chance to receive positive feedback about your appointments and what the doctor’s tell you. Someone may write with a different view he got from his doctor. Keep communicating! And good luck to you.
Thanks for the kind words!
Your updates sort of take my breath away. Not sure how I would function if I were calculating out the odds as you describe and the various options, etc. I think you are pretty darn brave. I think it is really great of you to be sharing your experience. You always give me lots to think about. God bless you. (for someone who suffers from post dogmatic stress syndrome, “God bless you” is not a phrase I toss around lightly, believe you me.)
Thanks for continuing to follow and comment. I appreciate it.
I got to your blog while researching, 1-month versus 3-month Lupron shots… so I have seen the movie, as a friend used to say…
Thank you for sharing your thoughts.
With regard to the depression effect, I found music to be a great help, and the drug actually brought me to a whole new sensitivity level to it. I get supercharged over live rock-blues at times…
Corny as it may sound, could you try visualizing simple, wholesome things like flowers, or other positive features like your favorite trail or landscape? I use that often when dealing with an unpleasant medical procedure.
Overall, keep the steady course, and it is OK to feel lost at times, or do goofy things.
Thanks for some great ideas.
Wishing you all the best in your “adventures”.
You have so much “on your plate” here. I have a sense that we process some aspects of life similarly. Your description of your own condition is “matter of fact” and not focused on the emotional aspect of your experience. In my experience, even when that is the manner in which I present the situation, there’s a lot more going on below the surface. You are experiencing depression, yet your writing does not reflect that except as a fact. I have a tremendous amount of respect for how you are handling a situation in which so many of the unknowns are in the hands of unknown parties–drug companies, the FDA, and insurance companies. At the same time, you are frequently out in blog land cheering up others and encouraging them. A class act all of the way. Thanks for reading my blog and being such a source of support. In the words of Arnold Schwarzenegger, “I’ll be back.”
You’re very astute, I do tend to intellectualize my situation. It’s very hard for me to write about the feelings. I try to keep them at bay, some are so overpowering.
I like to comment on others blogs – helps me feel like I’m giving back.
Thank you for this honest accounting of your experience. Someone I work with and care very much for is wrestling this same beast, and just about at the same point you are in the process, from what I can gather. He’s never used the PC words but I know from other things said, and treatment patterns that’s what’s happening. He’s extremely invested in eating only what’s good for him and getting lots of strengthening exercise. But, due to side-effects, aggravating work situations, and other life situations, he suffers terrible depression. It’s so hard to watch; not close enough to hug him but care enough to really want too. I want so much to help somehow but all I can really do is listen when he does want to talk.
Reading your blog gives me insights. Thank you.
I’m glad my blog gave you some insight. Thanks for letting me know. It helps me to hear this blog is of value.
Depression and anxiety are two of the most common and debilitating side effects of a cancer diagnosis. If there’s anyway you can support him to see a psychiatrist or psychologist, that would be a big help I suspect.
You’re a good friend. I hope he’ll let you help.
Oh, and he too is an engineer! He says he’s not in physical pain, not physically deteriorating, although the PA says at this point he should be, and he attributes that to his extreme health regimen (sp). But the emotional toll of his monthly injection and how it ‘alters his chemistry’ is devastating. Latest is, he finally accepted that he needs an anti-depressant and/or anti-anxiety med. He doesn’t want to be counseled because he says he can’t ‘talk his way into a different body chemistry’. I push him a little, sometimes, to take more time off, to let go and hire someone to take care of some of the little stuff that piles up and overwhelms Can’t push too hard or will push him away. That would be awkward; he’s my boss. That’s why your insights are so helpful. Thanks again!
Hi there. It’s June 2016. I’m wondering how your doing or not be insensitive are you doing? I have read this entire blog because my husband has prostate cancer. He loved his urologist so much he went with what the doc recommended. When he’s in that frame of mind he’s got his mind made up, nothing I say will mean anything. The doc knows best. I wish we would have discussed are options more. He is 55 years old and has had a robotic prostatectomy. He now has second thoughts but nothing we can do now. He feels like less of a man. He’s depressed and will never admit it. I’m 47 and I think he’s not sure about anything. He doesn’t want to get close anymore. He’s not sure if he can work anymore. The doc now has us waiting another 5 weeks to find put if he’s clear. He lives on eggshells. I wish i had done more for him as I am a registered nurse. I have taken care of many older gentleman postoperatively and never realized what true emotions they must have been feeling. Thank you for your openess to share your jouney and to know there’s others out there just like us. I hope as of this day your journey is not over. You are helping me help him. Thank you from the bottom of my heart.
I wish you the best of luck. It’s a tough road. I’m sorry he’s having so much difficulty. Unfortunately, I can relate all too well. Thank you for the kind words. You and your husband are exactly the reason why I write this blog.
To answer your first question. I’m doing pretty well. The hot flashes are coming back unfortunately, but I’m learning to live with them. I go in next week for my bi-monthly oncologist appointment. That means a blood draw for PSA. As usual, I’m a little nervous.
How is your husband’s PSA?
My husband’s surgery was just a few weeks ago. His post op appointment is July 1st. Before the surgery he was basically told get the prostate out and we will done with it. Then once in his hospital room the doc says we’ll have to discuss things when the pathology comes back to see if you need chemo or radiation or where we’ll go from here. Needless to say he has no idea what to think. Thanks so much fo answering you have no idea what this means to me. Just to be able to talk to someone who knows all of this first hand. Other people don’t realliunderstand. God bless you. Susan Murray
That his doctor would spring that on him at that time is unconscionable. The good news is it’s pretty easy to tell if it was a success. His PSA should be zero and stay at zero. If it isn’t, there’s a problem.
Don’t be so concerned about his mental state right now. I assume he was on Lupron before, which causes depression, and it’s my understanding that after any major surgery a brief period of depression is common.
The pathology is probably to see if the capsule of the prostate was compromised. If so, the risk is higher that the cancer is in the blood stream. I assume you’ll be informed, hopefully soon, about the results.
Glad I can help. Never hesitate to ask me anything.
If he does need radiation, ask for conformal beam. It produces less damage to surrounding organs.
As I’ve thought about this some more I’m a little confused. I assume your husband had the tests to determine where the cancer was. And I’ll further assume that it was limited to the prostate. Since that is gone, there shouldn’t be any talk of radiation. Furthermore, unless the pathology was PSA after the removal, I can’t imagine anyone starting chemo. The presence of PSA would indicate and failure and one MIGHT decide at that point to get chemo. I’m not an MD, but these statements would be troublesome for me if I were in your husbands shoes.
I thought of a scenario where one might want to start chemo based on pathology. If it showed that the capsule was comprised, then it seems one might want to start chemo as a proactive measure.
So today we got my husband’s SPA results it was 4.4. He now says chemo, radiation, and hormone therapy. We’re scared to death. We are in totally unfamiliar territory. Is it worth it for him to go through with all of this? Any information you can give me would be helpful. Thanks again, Susan Murray
I strongly recommend you get a second opinion. A PSA of 4.4 after a radical prostatectomy isn’t a good sign it should be zero. Most likely the cancer had penetrated the capsule before the surgery. I’m not sure chemo, radiation and hormone therapy are all called for. That’s what you want a second opinion for. My thoughts and prayers are with you.
I agree about it being scary. My husband was diagnosed in August. He had his first chemo treatment 9/7 and second one 10/5. His is getting Lupron injections and Xgeva injections. He takes Casodex daily. He is starting to lose his hair. But he hasn’t been nauseous yet. He is trying to stay active and just came back from a moose hunt in Canada. He was frustrated because he couldn’t walk as far and got tired really easily. I would love to talk to anyone who is further along in their treatments. Susan, this is a tough road for us wives too.
I’m happy to talk with you. Nearly everything I’ve gone through is in this blog. I recommend you start following the blog Prostate and God. In his last post he reported on studies using ginseng to reduce fatigue.
Just send me an email if you’d like to ask me anything.
I, too, have advanced prostate Ca: cranium, spine, scapula, pelvis. The oncologist and urologist keep me going with all the latest: eligard, taxotere, xgeva, provenge, xtandi, xofigo, supplements. The doctors and nurses don’t talk specifically about what is “beyond” xofigo, except maybe targeted radiation; queries about other chemos were not answered with specifics. “Questions to ask the doctor” are not this far along.
Disturbing are debilitating back spasms which developed just this week, curtailing plans. They are certainly not related to over-exertion but I find nothing written relating them to the cancer, except that your blog appeared as I searched. Emergency Narcotic med, cream and relaxant help a bit but no office visits are scheduled for discussion, which I will try to force 11/26 at a lab visit.
I think this musculoskeletal condition or irritation could be common yet silence prevails.
Sorry to hear you’re afflicted with this horrible disease. It sounds as if you’re further along than I am. I’ve only had Lupron and casodex. I’m about to add either zytiga or xtandi. What has you experience been with xtandi? How are the side effects?
Your courage continues to inspire and your support of others continues to make us humble.
Hello again. I wrote to you about this time a year ago. My husband went through approximately 38 radiation treatments. He also had one 4 month dose of Lupron. His PSA went down to 0.13. The oncologist then ordered another PSA in 3 months and appointment with him. He recently had a problem with his health insurance and wasn’t able to get PSA until 2 weeks ago(2 months late). His PSA is now 1.12. Now needs all new testing performed bone scan, MRI, and labs. Doc believes he will be ordering 2 types of hormones for him but depends on what the tests show. We know one of the drugs will be Lupron but not the other. My husband is very aware that his cancer is very aggressive. He now believes he won’t live another year. I came back to your site and reread everything I read last year. You are such an inspiration. Your knowledge that you share with all of us is priceless. Once again I’d like to know how you are doing? God bless you.
Susan- not sure if you have access to Facebook, but there are prostate cancer wives pages. Feel free to add yourself. in the search – Women Affected by Stage 4 Prostate Cancer, Prostate cancer wifes talk & support group, Prostate Cancer Support. I learned so much from everyone!
Susan, I’m so sorry to learn that your husband’s radiation didn’t cure his cancer. He shouldn’t give up just yet, though. Lupron can be very effective at controlling prostate cancer for a time. I believe the median time to when lupron begins to fail is 2 years. Mine lasted for 3.5 years. I was also taking casodex with it. Once the lupron started failing I swapped out xtandi for casodex. That may not make sense, but it was the right thing to do. That was about 6 months ago. My PSA dropped from the mid 70s to 14. When the Xtandi fails, which could be anytime, there are three other treatment options available. Two each provide a median increase in survivability of three months. The third option requires a genetic analysis of the cancer. If it has a certain genetic defect, there’s a drug called Keytruda that has show near miracle results for some people treated with it.
How am I doing? The answer is complicated. My cancer is stable with a PSA of 14, but I’m just waiting for the Xtandi to fail. There’s a lot of anxiety and occasionally depression. Drugs are my best friend, after my wife. I’m on a new drug regimen now. A couple weeks ago I thought it was a miracle switchover, but I’m having second thoughts. Yesterday was a full day of severe depression. Today I’m doing ok. Got to talk with the psychiatrist about this. The drugs and cancer have taken a toll on my stamina and strength as I wrote about a couple posts back. I hope water aerobics will restore some of what I’ve lost. If not, fighting off depression will be that much harder.
I want close by asking you to be sure to take care of yourself. I think it’s easier to be the one with the cancer than the spouse. The feelings of hopelessness and helplessness can be overwhelming, leading to depression. Plus, you have to soldier on after he passes. Please seek out psychological and psychiatric help as you need it. You want the time that’s left to be the best it can be.
Thank you so much for the kind words about the blog. You and people like you are one of the primary reasons I do this. It makes me feel so good to receive a comment like yours. Take care of yourself and your husband.
You can get Germ line testing on you blood. Also, read Bob’s cancer blog. Although not with us anymore, he lived six years on chemo and was a bad responder
This is so hard. You see like a very brave man. I wrote to you in 2016 to se how you were doing. At that time I discussed my husband’s PC. Right now he’s dealing with his 2ND ileus. Has been having only clears till his belly resolves. He has been stable according to oncology. His PSA has stayed at less then .02. He’s on Zytiga and Lupron. It makes him miserable. Doesn’t want address antidepressants. I’m not looking forward to the harder times to come. He does get frustrated and mean sometimes. He has Mets to lymphs. Otherness he’s happy as can be. He never tells the docs about his true pain or any other issues. Laughs and jokes with medical personnel and then I get all the repercussions. I’d like him to be down right honest about everything. Recently, he has become more incontinent. He was really good and now it’s happening a few times a week. He wont tell them that either. I’m glad your honest with your feelings. Such a strong person you must be. I hope I didn’t write too much about my own situation. I think I needed to tell someone. Someone who understands. God bless you on your journey. Thanks you for posting all you do.
Sounds if he desperately needs to be on antidepressants. I’m so sorry. He also needs to be perfectly honest with his medical team. They can help him, why no let them. This false bravo will send him to early game with many good times lost. I hope you can make progress for both of your sakes. Never hesitate to write me if you need someone to chat with