Was inspired to finally introduce myself here by lincolnj8's post (healthunlocked.com/advanced...) and by Dan59's reply to that post. They both appear to have similar stories to my husband's, and I'd love their input and support. If there are others out there with hopeful stories of survival after initial diagnosis of stage 4 with bone mets, would love to hear from you! (And from anyone else, of course.)
Hubby is 51 and just got diagnosed with stage IV Gleason 9 (4+5) on June 1st. PSA was 211 and alk phos was 919. Bone mets all along pelvis and spine and spots in other random places (eye socket, arms, thigh bones), but thankfully no epidural extension. Mets in expected lymph nodes near pelvis/back. No symptoms except for blood in urine that started less than a week before diagnosis, and some bone pain/tingling in leg, which we thought was due to biking issues, but which turned out to be caused by the bone mets/compression fractures.
After a month on degarelix (now switched to lupron), zytiga, and prednisone, his PSA dropped to 1.9 and alk phos down to 700's. Apart from some hot flashes the first few weeks and the usual sex drive loss that comes from suppressing testosterone, he's doing great. His random bone pain that he was having that we now know was due to the cancer stopped within four days of starting the meds.
He is in really good shape (no heart disease, no diabetes), except for the cancer - you wouldn't be able to tell he has it. He's an avid biker (did a double century for MS150 last September and will do it again) and he's been able to ride 50-60 miles at decent speed (17-18 mph) on weekends and shorter rides during the week since starting treatment. He had intentionally lost about 30 lbs since January (I lost about 25) by doing low carb/moderate protein/high fat. He's 6'1' at about 188 lbs. There's been some muscle loss that I can see, but again, he's still feeling really strong.
What does the future hold? At first we were terrified because the median survival rate for his treatment (or rather, the study on lupron+docetaxel chemo, which has been shown to have clinically similar results to lupron+zytiga) is 51 months. We were living like he was going to drop dead in 4-5 years. But then we changed our attitude and things are much better. Our attitude is: be grateful for today and love it, and also live today doing the things that will make our lives last as long as possible (food, exercise, etc.)
We have a lot going for us:
-He's young(ish) and strong and fit and exercises regularly (he's training for another double century ride for MS150 this September)
-He's reacted really well to the treatment so far
-The median is just the median - we're going to look at him as the one on the far side of the standard deviation, and beyond (set a new record! live 20 more years!)
-We're dropping meat and going to organic veggies and free-range eggs (we'll still eat fish)
-He's adding in some supplements (already was doing vitamin D and calcium, but is going to add lutein and selenium, maybe some others)
-After reading more on his current treatment, we asked our oncologist to add a small amount of Avodart to his current regimen, and she agreed (current treatment eventually forms metabolytes that encourage the cancer growth, and the Avodart helps stop this, making the treatment work longer)
-We're going to go to the conference in October in Newport VA to keep getting informed and seeing Snuffy Meyers
-We're going to keep going to the prostate cancer support group where we learned about Avodart and Snuffy Meyers so we can stay informed
-I'm going to stay on this list so I keep learning from y'all
-He's an awesome guy with a great attitude toward life
-He's got an awesome family, friends, and workplace that are super supportive
Would love any tips on lifestyle changes that we can make/improve on. We're in the process of reading Radical Remission (radicalremission.com/about/...), so would be interested in people's thoughts on some of the items noted there to help fight cancer.