I thought I'd chronicle what 90 days to live looks like, how do I spend my time, how do I feel. My goal here is provide a dose of dark humour. I'm scheduled to start chemo in a weeks time on Wed. Feb 28 and so hope to get more than 90 days but who knows.
The Hollywood version is all rainbows and unicorns either watching sunrises over the Atlantic or sunsets over the Pacific remembering and reconciling your past with your best friend or some such, and then gently drifting off.
Bullshit. I don't see that happening.
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February 20, 2024 - 82 Days to live
Overall I feel pretty good except for a slight knot or queasy feeling in my stomach, not taking any pain medication. I'm fully mobile and doing stuff, for example yesterday I was at the pool in the morning and swam 1 km front crawl laps and in the afternoon I was up the roof with a leaf blower clearing out the gutters.
Today
1. Spent the early morning cuddling with wife in bed talking and joking around. Had my morning coffee and light breakfast snack.
2. Wife's at work at the Butcher shop so I'm on my own. Plan for the Day is work thru a bunch of To Dos.
a. Healthcare stuff. Schedule Prolia injection for tomorrow. Figure out where and at what time to show up for my ultrasound and liver biopsy scheduled for Mon. Feb 26. Plan and assemble my Chemo Survival kit for Wed. Feb 28.
b. Schedule body work repairs on the car
c. Organize and get ready for filing taxes. I have to file four sets of taxes this year and work with two different accountants so this is no small feat. My father passed away last August and I'm the executor of his estate so I have to file his personal as well as his personal corp. taxes. Then I have to file my personal as well as my personal corp taxes. So there is a lot of collecting of slips and statements, spreadsheet modelling, and so on. This will be a multi-day job.
d. Estate planning. How to pass my assets over to my wife so that 1) there is no leakage to bloodsuckers like the govt, banks, lawyers and accountants (apologies to any lawyers and accountants out there) and 2) ensure that my wife understands how to run the personal corp. which is basically an investment holding company. This also will be a multi-day job.
d. Plan to go for a 5 km walk today, maybe lift some weights and maybe do spring garden work.
e. Work thru some laundry. My laundry has been piling up for about 6 weeks and I need to start working it down or I'm gonna be in trouble.
3. Wife will be home at 6:30. Have some dinner, watch TV and fall asleep by 8:00 on the couch.
So in Summary
With 82 days to live I'm working on laundry, gardening and taxes and I hope to squeeze in some exercise.
Written by
skiingfiend
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It amazes me how any doctor can give such life expectation information. Especially to someone who is still so active.
My dad spends his days resting and basically does not go out of the house if not for doctor’s appointment. Yet no one ever speaks about how much time he has left. When the time comes, we will know.
I hope chemo will work and give you much more time with your loved ones.
The prognosis for NEPC/SCCP is not good and is measured in months even with chemo. I certainly will be pushing for follow on clinical trials and other treatment that buys me more time.
My husband does his own laundry as well, since we've been married (40 yrs in May). All started when I washed a pair of red socks with his underwear. Everything turned pink. LOL Sometimes doing daily routine things keeps a sense of normalcy. May you have more years ahead.
It’s great that you’re continuing to do all that normal stuff. I do it too to give myself and those around me a sense of normalcy, which makes you feel positive about yourself. They have no clue about taxes. Hope we can play that round of golf. Best of luck.
My home town MO we didn’t see eye to eye with his treatment plan. So off to Vegas and new MO with Comprehensive Cancer Centers that is affiliated with UCLA. 30+ years experience. People from all over the country go to this cancer center with great results from the reviews what I’ve personally read. He disagreed with my MO in my hometown and so we are going his way and I’m personally happy with his decision also. Long winded but stressing a point to you. You’re not married to your MO, and a review from a well known cancer clinic might shed light on other possibilities.
For a variety of reasons Canadians do not have the same ability to switch MO's and institutions that Americans do.
I'm locked into a network based on the Province I live in and that network has a single centralized agency serving the whole province. I might be able to switch to another MO within that agency.
I got to make what I've got work and at least right now I seem to be on the right path. The key question is how much path is there, how much work are they going to put into my treatment plan.
You know even in the USA not everyone has big city access to those fancy “Center of Excellence”. That can be due to a variety of reasons - money, inability to travel because of other things, etc.
I often laugh to my self when I read suggestions like “go to XY or Z”. Reminds me of a funeral when I hear someone say “ Sorry for your loss”.
Hang in there and best of luck! You are doing the best you can and really appreciate your attitude. I am sure your wife does too.
Thinking positive thoughts for you! Praying for you to have much more time than Dr. estimated. We will all be " Passing" from this world to what awaits our souls, none of us know when, and your mental attitude at this time is such an inspiration!So appreciate you posting during this time, you are AMAZING, will be following along with you each step of the way.
Why not try the Joe Tippens Fenbendaozle Protocol along with whatever Standard of Care treatments you have left., after of course running it by your M.O.?
I ran it by my M.O., they said ok, as long as I did S.O.C. treatments also. Just a thought, because of course we are all "rooting" for you, and are desperate to think of something that could help.
If my suggestion is out of line, please know it is just a heart felt desire that some treatment, something, could help!
Not advocating any treatment, just relating experience FWIW. My best friend was diagnosed with adult T Cell Lymphoma 3 years ago. Immediately began the Fenbendaozle treatment you refer to. She goes to Stanford for her scans and bloodwork, and they have not "approved" this treatment. But shes still in remission after 3 years. My husband wont try it as his PCa is currently undetectable. I'm not wanting him to rock the boat.
Sorry to hear of your prognosis. I hope your chemo will be effective, not too difficult physically on you, and you live to have your disease managed or cured.
The emotional effect of terminal prognosis is tremendous, I hope your prognosis will change significantly upon treatment, and you can find emotional peace and stability.
Bloodsuckers is way too kind a description for lawyers, Never apologize to or for lawyers, there are no words or phrases to harsh to describe just what skum of the earth lawyers truly are.
And never believe lawyers are on your side, they are always on their own side. You're just a tool to be used for their own benefit.
My lifelong philosopy wrt to lawyers has been to avoid them at all costs. I've been pretty successful at that and have only needed to consult on a few small mundane matters over the course of my life.
Thanks, I'm obviously hoping for more but I thought it would be an interesting exercise to see how do you respond when you get such an unexpected ultimatum on short notice.
It's not that bad. I'm not planning on giving up yet. I'm hoping for at least a year if not 2.
Once this week is over and chemo starts next week my plan is to find a follow on clinical trial. I've a found a new one that just came out yesterday that I'm going to talk with my MO about. I'll be reviewing all the links you provided earlier as well.
Right now I've got to figure out how does BC Cancer handle referals to trials they are not running internally and what level of support do they provide.
I am in BC and 3 trials Comet 3 trial for SABR (aka SBRT)
trial for Fg18PSMA Pet Scan and pretrial for Lu177 I got pushy with MO#4 and she responded and got me set up with the LU177 trial .I am working with MO #4 and 5 concurrently #5 is running the Lu177 trial,
MO #4 told me yesterday that I have 24 months maybe pickup some time with Docetaxel and the Lu177 I havent told my wife yet
I can relate to your situation I hope your MO is wrong I find BC Cancer to be 10 years behind the times compared to USA or Australia which is very frustrating
My dad was diagnosed with Prostate Cancer (stage IV) in January 2023 and then Small Cell Carcinoma in liver about six months later. He went through six rounds of Chemo (carboplatin+etoposide). SCC spot in liver has reduced after Chemo.
Thanks for sharing your journey. I was not aware of this type of prostate cancer. I read a little about it after reading this post. Were you treated with a PARP?
I’m praying for an extended outcome for you. You have quite a full schedule. It looks like you’re staying active and have your physical part covered but what about your spiritual?
You sound pretty healthy for a 90-day prognostication! I sincerely hope it wasn't a scare tactic to force you into chemo! Best of luck and live it one full day at a time!
My husband had stage 4 pancreatic cancer. He tolerated 15 Folfirinox (really heavy duty chemo) infusions super well, followed by Gemcitabine/nabPaclitaxel.
He had innumerable liver lesions, up to 2 inches in diameter upon diagnosis. Chemo knocked them out to radiologically invisible, and he had minimal side effects. You wouldn’t have known that he had pancreatic cancer 10 months into chemotherapy.
But then the remaining <1% heavily mutated freak cancer cells went into overdrive, spreading everywhere, and he deteriorated to the end within 4 months.
The reason why some doctors give a short prognosis for some cancers is statistics.
As a witness, caregiver, what really struck me is how quickly a body can fall apart once a critical system like the digestive system stops working well. Prostate cancer is so “harmless” in many cases because it doesn’t affect anything critical for many but once it’s in lungs and liver, it’s not much different from other dangerous cancers.
I wouldn’t over-estimate the side effects of chemo but I also wouldn’t discount the prognosis and not take a day of these 90 days for granted.
I'm well aware of my situation. Its like I'm strapped into a rollercoaster car and there is no way off. The best I can do is live each day as it comes, fight for access to additional or emerging treatments to buy more time and finally make sure all my affairs are tied up and don't dump a mess on my wife to cleanup after I'm gone.
hey I know how important it is to have all your ducks in a row… just remember that a few things can pop up that you don’t think about now. And when the dreadful day comes remind your wife it may take time to get all the remaining things done. She needs to be patient with herself. And that everyone here will help her.
My wife is there for me 100%. I don't know what I would do without her. As you well know this is not just taking a toll on me but is taking a toll on her as well, not because of taxes or estates but because she doesn't want to lose me.
I have appreciated our virtual friendship over these last couple of months, I'm glad you're still here.
I am hoping for the best and that you prove your MO wrong on his prediction. Your sense of humor is awesome and the fact that you are getting so much accomplished is fantastic. I am very happy to hear that you are not in significant pain. Keep doing what your doing and prove that MO wrong.
I find it so interesting. Our MO has never given a hard timeline like that. My dad is pretty much immobile, muscle mass completely gone, to the point that he was scheduled a consult for radiation of a spinal tumour that we are unsure he can physically get to. Our MO has never given solid timelines, and only more recently went from saying “could be months rather than years” to “I could be any time, we are not sure”.
I guess saying 90 days is just their standard estimate for you? Either way I hope you get plenty more time than that
Thanks. I think the issue is NECP/SCCP vs adenocarcinoma (regular PCa). NECP/SCCP is much more aggressive and spreads fast and has much worse OS and pFS.
You are not a statistic. No one knows how long we have accept God Almighty. Besides, the Grey Cup will be played indoors this year at BC Place so that's a must see for any Canadian! Go Lions!
Those days are long behind me. (On the QT: my Wife would be the end of me if I even thought about doing that!) I will probably take more time doing our personal taxes than you are doing your four! I'm the laundry guy in our home, takes forever now. Older and slower, I guess. I count each and every day a blessing! I get to kiss & hug my Wife, watch the wildlife in the backyard, smell the seasons and watch my Mother's crystals break the sun into a variety of colors spinning about our home! I remember only the good memories which wrap me in warmth. I feel blessed!
Here's hoping that you can find that feeling too! Good luck!
All I can say is that I had a similar prognosis but I was given six months; that was ten and a half years ago. I have done everything to stay around, even buying Phoenix Tears, making them into suppositories and using it that way. Lots of things and I'm still here. Keep pushing my man, you might surprise these doctors. From a fellow skier and Vancouverite.
When the diagnosing Dr. gave me 18 months to live I got busy trying to live the best 18 months I could. Turns out that the Dr was WRONG. I'm in my 42nd month and still going.
However, that shock was good for me and I learned a lot about what I value most. That's why I would recomend that you plan on doing even more of #1 (Spent the early morning cuddling with wife in bed talking and joking around). Those times snuggling and talking with my wife are the highlight of every single day around here.
Over the last 3 years my wife and I have had a naked cuddle almost every day. It has drawn us together in ways we never imagined.
I’m in love with the premise of your post. I had been thinking about periodically posting about my hubs hospice experiences because it seems like there’s some fears and uncertainty regarding that in general and specifically how pain is managed towards the end. But then I came to my senses and decided to keep my mouth shut 🤐
It's great that will chronicle your life here. It will mean much to many and certainly to me.Fasting around chemo may reduce side effects a lot. Two or three days before and one day after. In case you haven't seen them, there are threads on it on this forum.
I've been looking into it. I don't see how I'm going to do it. My 3 week cycle is 5 days of chemo and 2 weeks off. I don't see how I'm going to fast for 9 days. I'll lose 20 lbs.
Hey, you are the Aussie version of me (or conversely, I'm the Canuck version of you). I used to love to windsurf and sail, owned a sailboat for 15 years, obviously am a skiing fiend and I was an IT consultant in banking and finance (product development, software architecture and software engineering).
You just don't want to have the same cancer prognosis as me.
I think its akin to being a witch doctor to make proclamations like "you're going to live X amount of time." In my view, that verges on criminal. I've read a number of books that describe people whose recoveries destroyed such predictions. The arrogance of someone who says something like that astounds me. You sound like someone who has thousands of days to live. That said, there are doubtless exceptions where doctors do have some grounds for estimating survival, and I don't know your particular situation. My personal doctor, however, has told me of people who have vastly outlived his estimations, and therefore she NEVER tells people things like this. She agrees that it is tantamount to criminal to make such prophecies.
Thanks, my MO started out that way but this diagnosis is serious. For me this is a reset. This is now my 1st day of cancer all over again and what am I going to do about it knowing everything I learned so far.
No one is guaranteed tomorrow no matter what, so live your life to the fullest each and every day that you have, life itself is a blessing. Enjoy 😊 God Bless
Stop this counting shit.......... Who the fuck really knows when we're gonna cash in the chips?....Throw that doctor's crystal ball in with your dirty laundry cause it need a good cleaning. I thought you were a friend.... but I can't be yours if you're counting to the final day to make me laugh.....Get on your skis and sail away down those beginner slopes as usual, and try not to improve on a "Sonny Bono's down hill run" (he couldn't sing a lick anyway)....
I value our friendship. I am not trying to make anyone laugh or cry. I know this is uncomfortable, it's uncomfortable for me and it's uncomfortable for people who prefer to not think about worst case outcomes. Unfortunately for me I have to face a worst case outcome and like it or not this is part of the Cancer experience. If I don't post about my personal experience what do I post about? Is it the MaleCare consensus that I should just disappear and in 3, 6 or 12 months my wife will post a final update and that's it? Is MaleCare just a social club for long term survivors and the unfortunate few with early worst case outcomes, who arguably are most in need of urgent support and advice, not invited to the party.
I agree the title has shock value and that's probably why I picked it. But this post has generated positives: people who were unaware of NEPC/SCCP now have it on their radar, other members who have experience with this have been responding giving me valuable information to plan my treatment strategy, local Vancouverites have been making real world contact with me to share experiences and strategies for getting the most out of BC Cancer and strategies for getting augmented care outside of BC Cancer, and in earlier posts I have gotten lists of clinical trials to look into. The many words of encouragement give me the strength to fight for the best treatment options I can find and not just throw in the towel and passively accept my lot.
In an earlier post you recommend I look into pembrolizumab. Well I found a brand new clinical trial, literally posted 3 days ago, being run by Rahul Aggarwal at ucsf. Aggarwal is one the worlds leading researchers in NEPC/SCCP and the trial is looking at the combination enzalutamide, pembrolizumab and a novel agent in patients with NEPC/SCCP, among other arms. I have already passed the trial information onto an outstanding young doctor and researcher who has rejoined my case after being absent for a year, he is evaluating it and we will discuss if it fits after my chemo and if I can get a referral.
In conclusion, I will continue to post using this title, but not every day. So far it has been of benefit to me and I hope to return some of that benefit to the community. I hope you can see past the taboo of considering/discussing worst case outcomes and remain my friend.
Chris
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PS - here is my most recent note to the young doctor I referenced above. This is just one of the pokers I have in the fire. As you can see I am not throwing in the towel.
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Thanks,
1. I am aware of a number of Phase 1/2 trials in the NEPC/SCCP space, which has been an underserved segment for many years, but there is a growing awareness that more needs to be done. I am preparing a package of what look like the most promising trials.
2. What is my treatment plan for chemo? Specifically how many cycles are planned?
I am aware that BC cancer protocols stipulate 3 cycles for palliative and 4 cycles for curative.
I am also aware that in US clinics upto 6 cycles have been given.
I am not prepared to accept a treatment plan of 3 cycles and then off to hospice.
I am interested in pursuing a strategy of 4-6 cycles and then follow with 1 or more clinical trials.
I'm glad you are back on my case, I was sorry to see you go last year. This time round I intend to fight to keep you on my case.
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Preparation for Treatment Decisions 90 Days after Immunotherapy Stopped. 
looking for next steps for my young husband
Should I continue Abiraterone for 12 months, or switch to chemotherapy now?
