Jan 2024 (after lots of research and nearly 3 years on from original diagnosis of Metastatic Prostate Cancer with extensive bone metastases) I have just worked out the answer to the question I didn't know I wanted to ask. Instead of worrying about PSA and other test results my real concern was "what was likely to happen as the cancer progressed and would I know". The answer appears to be that when the cancer is preventing me from getting out of bed or a chair for more than half of each day then I will probably deteriorate quickly and possibly have about 2 months left to live. Other than that any length of time quoted is probably very much guesswork. It means up to that point I can use PSA and other results to agree with doctors my best palliative care to maintain best Quality of Life. That is what I have done for 3 years but without realising the actual question I wanted answered. To be told at diagnosis to be aware of MSCC(Malignant Spinal Cord Compression) but not to worry about it and subsequently to have PSA etc. tested every 3 months confused my thoughts. Treatment has been superb nevertheless and recently (August 2023) suffered an episode of MSCC. This may not be your question but hope it helps you work out your question(s) and thereby get closer to an answer(s). I intend to now keep active as long as I can and it doesn't matter if that is more or less than the original 5 years indicated by the consultants. What I will also be careful of is not to overdo things so whenever I feel a problem (eg. ache in leg bones) I take a rest. I had one bad episode where went for a walk and suddenly had to phone home for a lift as became stranded unable to put any weight on right leg. Week later with plenty of rest fully recovered and walking again but more care with routes I took.
Answer to unknown question: Jan 202... - Advanced Prostate...
Answer to unknown question
Thanks for posting Brendan. Your story off not knowing and then knowing resonates powerfully.
"The answer appears to be that when the cancer is preventing me from getting out of bed or a chair for more than half of each day then I will probably deteriorate quickly and possibly have about 2 months left to live."
Can you elaborate more on the answer?
Thanks and have your best day today.
John
hi Brendan … I’ve been in the “ The answer appears to be that when the cancer is preventing me from getting out of bed or a chair for more than half of each day “ boat for over 5 years now and I’m still going pretty well. Can’t walk ( more than about 15- 20 steps ) and I have to live, 100% of the time, in a wheelchair , couch or bed but I’m still maintaining. I’ve got etrikes , wheeled chairs and many workarounds and I keep going pretty well. I hit hike and bike trails for 15-30 miles, shop in stores , go to restaurants etc. . I stay about the same. My skeleton is literally trashed and I’m still good to go. The sickness is tolerable and immobility manageable …. You are right , IMHO, we never really how much time is left and a lot might depend upon your determination and willingness to adapt.
Love brother
❤️❤️❤️
Thanks Kaliber. It is always good to hear how others are managing. I think you have elaborated as John requests. The only thing I can say is don't worry about the cancer progressing - we know it will at its own pace. Try and keep as active as possible (but stop as soon as you feel you are overdoing it) and keep pain under control as much as you can. This now keeps me going. I understand that eventually the cancer will end up attacking some other organ, like my liver, rather than just my bones, at which stage it will progress rapidly. Until then I am enjoying keeping going. I do not think my journey has been normal, see my biopsy. But, probably none here have a normal journey. My bones are not good but not bad either. So far I have avoided any falls. Originally they thought I had multiple Myeloma. I only tried painkillers (paracetamol) when my MSCC (Malignant Spinal Cord Compression) started and when they had no effect I contacted the Emergency services. I was worried the painkillers would disguise my illness progressing - I now know that is very unlikely. When I get pain the answer seems to be try and clear it up by resting and taking painkillers. Only if that doesn't work do I need to be concerned and raise the alarm that I may need additional support. Two and half years on Xtandi has worked wonders for me but has started to fail (measured by scans and PSA readings) but has been the best painkiller to date. Looks like I will have to try chemo next to see if that helps with the pain for possibly another few months.
Hope this helps
Paracetamol is over the counter Acetaminophen, like Tylenol. Good to know it can work for bone pain. I guess the future "additional support" would be opioids.
Thanks Vintage42
I think you have a good handle on things and a great attitude. That’s a big plus right off imho. I’d only say that, like Vintage42 is saying, that “ serious “ painkillers can be a life changing ( for the better , imho ) move to handle that bone pain, and improve your daily quality of life.
I take Vicodin ( hydrocodone ) 4-5 times a day . It has also 325mg of acetaminophen in it . I started with 5s but use 10s now , after 5 years of everyday use. For more serious , break thru, pain, I have dilaudid ( hydromorphone) 4mg . It’s seriously more powerful than vikodin. Both work very well for me. With either, one has to balance their tendency to cause severe constipation with a laxitive. I take gentle Sienna daily to promote regularity. There is a whole catalog of serious pain killers to make your life better. If you have serious bone pain and with our prognosis, addiction isn’t really a “ thing “ to worry about, imho. You probably have a pain management team available if you need them. For me the better we can “ ease “ along , the better yayahahahaya.
Thank you brother, I hope you keep on keeping on for many years to come.
❤️❤️❤️
Thanks Kaliber
Hi Kaliber, how do you manage distances like 15-30 miles? That is longer than completing a marathon in a wheelchair! I know some people do that, but it has to be an ordeal?
Hello Brendan, I suddenly had my left leg drop from right under me....took a bit of a header but seems ok now.... BTW what is your age?
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 01/16/2024 6:44 PM EST
Glad to hear you seem ok now after your setback. Hopefully it was a one -off. I'm 71 now so still feel quite young. Ever since diagnosis 3 years ago all doctors have stressed my treatments are all just palliative. It's probably only now that I really understand what that means.
Don't go getting yourself killed in an accident before I get a chance to get to NY for that bullshiting session you promised me.
Keep your hands off the door knob collection, he already promised them to me.
Whoa! That looks really cool! I don't think I have seen one before. How fast do you normally go on it?
It looks like it would be a welcome diversion and a good way to see things outdoors. I hope it brings you some pleasure when you can get on it.
I haven't noticed any actual griping from you, but if you feel the urge, gripe away! I hope I'm able to maintain your attitude over time.
Always feel griping is a waste of valuable energy especially now I don't have very much😀.
Not what you're looking for?
You may also like...
Different answers to the same Question
Can anyone answer my question?
Keytruda, a question probably no one can answer.
PSA testing comparison question
Two Questions: 1) Zytiga and Liver; 2) Minor Pains
Newbie with questions
Question from thread about life expectancy and bone mets
Another Vacation Question
PSA test results question
