It's time for a repost of my two-part cancer journey diary. Some "starting the journey readers" might find it helpful. Originally posted as two Health Unlocked "replies" - maybe I should make them an actual full "post".
So I am pleased to report that other than fatigue, I feel sort of normal right now. Even back at work part time. Very different from the pain and terror at the beginning.
My biggest challenge right now is pushing myself to exercise. And of course in the back of my mind is the dread of progression. But the contrast between 2 years ago in spring 2022 and now is astonishing. In frankness we, in other words my wife and I, did not expect that this would be the case.
One side comment is that, because I was diagnosed too late with high volume metastatic Stage 4 PCa, it was too late for surgery or radiation! The success today is entirely related to triplet therapy - in other words drugs and chemo. And my quality of life has not been impaired by destructive therapies, although the achievement of basically zero testosterone means fatigue. (At the beginning I had a lot of meetings with palliative care. Eventually I realized it was not so useful. At least at that time and so far.)
G-d willing I am able to continue to enjoy this level of good health, especially for the benefit of and joy with my family. And thank you to Canadian Healthcare.
The Beginning Of A Metastatic Prostate Cancer Journey - Part 1 of 2
Thanks for posting. I was diagnosed also in 2022. All the research I was doing on radiation vs prostrate removal went out the door when scans came back metastatic! I year of lutetium and ADT and PSA has been undetectable for many months and the latest scans indicate only residual activity, so thinking "this thing is being kept at bay". SEs suck, but bearable. My wife and I met the MO a few weeks ago and she out of the blue asked "Is he in remission?" and we got an affirmative. I guess that's a term the docs don't want to throw around lightly, probably with good reason. Just got my zolodex this morning (was there more belly than last round?) as the battle goes on.
Wow an amazing story LTR. I think Lutetium was fairly new at that time?
We have both followed a a similar path using different methods. We've avoided, it seems, destructive surgery or radiation. And the side effects, in my case esp. fatigue, are bearable. Contra many opinions I don't care about the whole ED business. You've probably seen some of the new stats that LE for men with metastatic PCa has improved.
I take some supplements, but as Mr T. says, there's no clinical evidence in support of them. (Although of course there's the cliche "absence of evidence is not evidence of absence" 😃).
My biggest challenge lately has been exercise. I've gone back to work and my exercise program has really declined. Is exercise a focus of yours? And are you able to maintain a program?
Just a thought on the exercise thing. I do walk a bit and do yard work etc but I am pining to get back in the gym and also do some HITT training. But, these nagging pains in feet, knees, and hips keep me from doing until I figure it out.
Step 1 was getting some orthotics so excited for that and "hoping" my others issues stem from feet problems and maybe the 40lbs I put on from Prednisone!
Yikes weight gain from Prednisone! My wife says it makes me hungry even ravenous. I do have a great appetite.
However we do low carb here. And while in the past we've done some fasting now we could say we just do time restricted eating. Which is fancy for no snacking.
So it's been difficult but I haven't gained weight. Of course lurking in the background is sarcopenia and let's not mention cachexia. And we could say osteoporosis too. So some kind of weightlifting is important. The whole exercise balance is a challenge. I've learned about why "Zone 2" exercise is important.
I started an actual part-time job a few months ago and my exercise program has basically stopped. You may be aware of the electrical test that shows the balance of fat and muscle in the body. And the concern is loss of muscle mass. A year into my journey a doctor looked at me and said you've lost muscle mass! So our fight is to maintain muscle mass. And bone density too. (For bones I take what I hope is that correctly calibrated amount of calcium and vitamin D everyday. Plus magnesium. And also K2.)
I have metabolic syndrome which is as you know not quite diabetes - and I have managed to get my GP to give me metformin. As you know about metformin, there is some evidence that it may be effective off label against PCa. Which was my motivation.
Maybe you shared this in other notes, but may I ask why is it that you have the pains in your feet, knees and hips? I had quite a debilitating pain in one hip for a while and had various imaging things done on it but the pain is totally gone away now.
Apologies for the slightly rambling nature of my note here. I don't have time to edit it - and I'm thinking maybe some helpful points. As I have written about recently I find myself in the middle space of metastatic PCa - which kind of didn't exist before - between diagnosis and palliative care. With the new generation drugs we might spend a significant amount of time in this space.
I've spoken to some doctors about this and there is an acknowledgment that this is happening and more and more people are in this middle space. With a terminal diagnosis but living for years with a not too bad quality of life. Aside from the ever-present wrestling with fatigue.
So I work to understand what I can do to prolong this middle ... and exercise is the biggest thing I can do.
It's kind of like a tightrope though. A young person has resilience. But at any moment we can fall off the tightrope.
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