The prompt says: "Tell Your Story." Well, it's my husband's story almost identical to 5 months ago, 3 months before that, and multiple months before that, so I'm repeating the posting from 5 months ago below. He's stable again with nearly identical numbers. ALP 38, PSA 0.10. He was a Gleason 9 now in his 9th year. With each visit we expect the worst, but whatever he's getting and doing has kept him stable since 2019 when he started chemo, which ended seven months later in 2020. He's basically had the plain vanilla treatments men were getting from 2014 onward. The only out-of-the box treatment was 10 Docetaxel infusions, not 6--rough. He even kept his port in from 2018 until last year since he was sure he'd be getting Jevtana, Pluvicto, and some of those other treatments. He got his fourth pacemaker in January this year (planned not emergency), so the port had to come out. It's not all a walk in the park since Lupron + Xgeva are both fatiguing and draining. This disease and the treatments for it are variable to each man, but whatever you're getting, we wish you similar stability.
The 5 months ago report:
Again, Mr. Spouse's (age 78) 3-month results are boring in a good way. See Profile for details and history, which are, essentially: 2014: high Gleason 9, low PSA, 3.38* followed by 3 yrs. Lupron, 9 weeks IMRT, later Zytiga (failed); 2019: 10 Doxetaxel and indeterminate length of Xgeva; Lupron life sentence. No supplements after anti-neuropathy supplements did nothing awhile back. Gets Vitamin D from sunshine, not out of a bottle. His calcium is good with no supplements.Whatever the alchemy of his care, so far so good, i.e. continued stability since end of chemo in 2020. Results two days ago 9/30/2022: PSA: .15; ALP: 40: CALCIUM: 10. I'm reporting results because Mr. Spouse 21 is one of the "fortunate" guys who's gotten some mileage out of chemo, which ended in 2020. I'm always surprised when I update Profile, which is getting as long as War and Peace. Things didn't look that way at all in 2014. He's starting year 9 next month and has been heavily treated with all the stuff men hate: Lupron, radiation, chemo, Xgeva.Side effects after all this treatment: He's fatigued and ache-y--not his pre-PCa self--but still rides his bike like a maniac multiple days a week + intermittent energetic grandparenting, ; some brain fog; some neuropathy from chemo despite icing and trying recommended supplements; feels lousy in the AM. Lupron really does suck but we still have as full a life as you can have while avoiding Covid. Pre-Covid, we did some adventure travels overseas and kept up with family life during all phases of treatments. He's been a big exerciser throughout to stay in mental and physical shape for all these treatments. *High Gleason, low PSA guys should get scanned more frequently. Remind the oncologist of this if they forget as ours did in 2019 when scans revealed mets all over after a year went by between scans. Now on 6-month scan schedule.
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spouse21
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Thanks for your response, TA. I hadn't posted for a while, but I wanted to input more data for the HU "lifers" who got diagnosed way back as my husband did.
Hi, looks like you've been through the ringer, but doing well. I'm only 2 years in with ADT. Zytiga being my daily regime. The side effects are quite awful, but it's keeping my PSA down, presently .008. Keep up the fight.
Thanks, Painterism1. I hope you continue to do very well with your treatments. There are so many more mainstream options now than in 2014 and lots of interesting options in the pipeline. Onward!
Mr. Spouse21 only thinks of intense exercise as staying in shape personally, getting outdoors, and dealing with the treatments. There isn't enough evidence to show exercise definitely keeps high grade PCa in check. There've been some great guys on HU who died of PCa who were big exercisers. I don't want to mislead anyone into thinking if they exercise like my guy they'll get more mileage out of chemo, Lupron, and all the treatments. We both enjoy exercise and getting outside. If it helped him recover more quickly from radiation and chemo, than non-exercisers, that's all he expects.
Well, intense, maybe for stage 4 cancer, age 78. Last summer he was regularly biking in the heat 20-25 miles about four times a week. We have a lot of hills around us, and he walks up them 3-4 miles a day in winter, in snow. Did that yesterday the day after Eligard and Xgeva shots. Does tai chi and light weight lifting as well. Has a pacemaker--fourth one installed in January and was out in the cold doing the hills several miles a day within days of the surgery.
Commenting here to bump up my old thread, which still applies! Much to our amazement Mr. Spouse 21's report from yesterday's MO visit is virtually identical to the report I posted three months ago and multiple visits before that. I updated the profile, so I won't repeat the details here. He's had a solid three-year run since ending 10 Docetaxel infusions in 2020. He was diagnosed with Gleason 9 in all cores in 2014, and he's approaching the 10-year mark altogether. We're relieved and thankful for the support we get from the Health Unlocked community.
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