I've got a scan scheduled for Wednesday and have at least the usual amount of anxiety in anticipation. My solution is to keep myself moving or otherwise busy as much as possible, thus a blog post about my most recent adventures, and, oh yeah, it's now been ten years since I ran the Boston Marathon, which should have been today if it weren't for the pandemic.
Avoiding Scanxiety with a BHAG - Advanced Prostate...
Avoiding Scanxiety with a BHAG
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tom67inMA
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Loved your post. Really a “Bare Women’s Club”? !??? Guys you’ll have to read the post to find out more about it because I’m not showing my husband more about it. 😉
LOL, Women's Club. Hey Tom, I know you like running and today is Patriot's Day. Have you ever run the Boston Marathon? Wishing you well on Wednesday. I have a feeling we are going to improve your scan percentage.
If I understand correctly, you ran several miles while on your umpteenth course of chemotherapy. That is cause for celebration! I’m sure everyone here understands your scanxiety. My husband is having his first full scan in one and a half years on Friday. For some reason, I’m more worried than he is. Good luck, Tom, and keep us posted!
I walked several miles during chemo, yes, and that generally would be cause for celebration. But I'm a runner who is used to doing so much more so the celebration is mixed with mourning the loss of what I used to be able to do, all while wondering if it might be possible to claw some of that ability back.
What is really frustrating is making obvious gains in my ability in one cycle, and then having a minor setback the next cycle.
As for scanxiety, I'm not sure if I'm "worried" so much as having PTSD type flashbacks to prior bad scans. I can easily believe you're more worried than your husband, in many ways it can be more difficult to be the caregiver than the patient.
Cool blog Tom, glad your getting out and have Big Hairy Audacious Goals. Keep on moving brother, good to see the photos🤙
Yep I have these tests every 6 months. I’m now at 56 months since diagnosed, still get the big A every time I get another set of tests. Hang in there warrior
Good luck for the scan. Enjoyed your post about the adventures and can relate to the ups and downs of feelings. Even on ADT my husband can have a very 'down' day. He bought me a 1958 British car for my special birthday and had it shipped to Canada as a surprise. It is a similar model to what I used to drive years ago when we first met. The car drove off the lorry on arrival but then started having problems. It is a project of love and he is taking it apart painstakingly to have it re-sprayed so that he can rebuild it, re-do the electrics, etc. He would like me to drive it around town in the summers or go to British car fairs! Last year, he had the hip pain that the urologist was ignoring along with rising PSA. It scuppered the amount of work he could do on the car. At the moment, the return of the sciatic pain is making it difficult to start on this project along with worries about what is causing it. Having goals is a great motivation but they can be a source of frustration if they are not a little flexible. I hope that you can enjoy the journeys, the conversations with the walking companion and the photo opportunities without looking too closely at the miles covered. What you are doing in amazing and inspiring.
I can really relate to what your husband is going through. Even as cancer patients we want to continue to live life as best we can instead of giving up and sitting on the couch each day, but the sheer unpredictability of the disease and the ability of it to change in a relative heartbeat make planning frustrating.
I read something uplifting in Dr Myres's book last night after my husband was feeling down due to the pain and it was that he believed every PCa patient, even the metastatic ones, has a right to try to get to complete remission even if there are some ups and downs along the way. Gives one confidence in what we are all doing.
Interesting, did he go into any details about this? I've been daydreaming a "what if?" scenario in which I ask for a PARP inhibitor to be added to chemo to make it more effective, in the hopes of getting a complete remission in my liver, but that would be effectively creating an experiment of 1. I fear chemo alone is going to result in continuous chemo to maintain a partial remission at best.
It seems more aggressive treatment produces better results, but of course if you do it in a study you get something like 10% spectacular results and 80% of patients find the treatment too toxic, so the study is a failure even though it produced several "fluke" cures. This is all based on my personal observations of some of the stories on this forum, and shouldn't be considered a scientific meta-analysis of actual studies.
In this book he does not refer to PARP inhibitors but there as a talk on You Tube where he did so. I do not think that it was in combination. In the book, he talks of combination of Leukine with chemo. He says he repeatedly used "ketoconazole and transdermal estradiol together and found thievery effective in treating hormone resistant prostate cancer, even after chemotherapy has failed. Patients also tolerated it very well. Adding Sandostatin (because it blocks a major survival pathway for prostate cancer) may increase the reposes to many other agents that act to kill prostate cancer, including ketoconazole and estradiol as well as chemotherapy. Such uses represent an important area for future study."
uhhhh you said british car....the older one always had gremlins... the 12v system threw em for a loop.....i always wanted a stag....till a friend got one , hardly ever ran ....
Lucas electric systems are world famous for all the wrong reasons. Legend has it he invented the short circuit.
Lmao
It is a Morris Cowley 1500 (same as Morris Oxford series) and takes a 24 V battery. Stags - wonderful design, terrible engine.
Well Thomas, just a warning..... If while you're walking in the woods you see a young pretty girl all dressed in red don't say you're the big bad wolf. If you do "prepare to stick to the script"............. (and BTW regarding your test(s) I wish good results for you)...
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 04/20/2021 7:07 PM DST
Good luck today.
Good luck today!
Good luck Brother, here's to great scan results !I have an Axumin scan this pm to see if the 2nd round of Taxotere has resolved the two 1cm pelvic lymph node present last Fall
Fight on y'all
Randy
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