New dx

Age 64, April 8 of 2018 diagnosed with PSA of 132....few days later 4+5 Gleason. This was in Baja and now getting care at Swedish in Seattle. Pelvic, ribs, spinal, nymph lobes mets on scans. Lupron so far has lowered PSA to 2.8. One rib has been on/off hurting for several years. Just got back from surfing Mentawai Islands in Indonesia and 4 days into 12 day trip my rib was hurt from impact too much to surf any more days. I am wondering about having to stop surfing due to rib always getting hurt.

New to this and appreciate finding this site.

Saludos.

[Dan59]

Welcome to the club! You are having a good response to Luppron. I would say it is important to keep doing what you love to do. Your body will tell you if it is ok to surf, Nazare might not be suggested. I had a similar maybe a bit worse dx than you 12 years ago, You can see my history by clicking on my picture.

Is 8 knots the speed of your boat?

[Schwah]

Don’t quit your passion my friend. Just try and stay out of the water if the waves get too big. I’d ask your dr about zytega now. Recent studies have shown zytega together with Lupton at diagnosis of metastasis gives a 40% linger survival.

Schwah

[Tall_Allen]

You can ask for one or two shots of SBRT radiation to your rib met. It will reduce the met, stop the pain, and prevent further deterioration of it.

Robert Meier who works at Swedish can do this for you.

[ctarleton]

With confirmed bone mets, you might also ask about getting one or the other of the periodically administered bone protective agents Zometa (zoledronic acid, via IV) or Xgeva (denosumab, via injection). Before starting on one or the other, you might also ask about/consider getting a base-line Bone Density (DEXA) Scan/Report.

Do stay physically active, and safely do what you love to do. It will help both physically and mentally as you continue on Lupron.

Charles

[leo2634]

Hi I'm very similar to your situation my Doctors started me on Lupton and the following month Zytiga,Prednisone,and Eligard which is every six month injections which takes the place of Lupron, I also receive Xgeva for the bone mets. I feel better then I have in years. Attack this with all you got don't stop doing what you love keep a positive attitude cancer hates that. You said your a surfer if it hurts catch a smaller wave until the meds kick in. Leo

[larry_dammit]

Welcome. Bone Mets here, stage 4 22 months ago, have had rib pain since the start but it is getting better. Doctor did warn me of fall danger and lifting too much weight. 😡😡😡

[Hidden]

Thanks for all the positive support. The first many weeks were such an emotional overload and I am glad to be at a more centered place. Just hearing that even 5 years was possible was a big relief.

I had a 1973 42' Grand Banks that was my obsession for 12 years. With talented friends we made this boat beautiful again. Hence the 8knots. I like the idea of going slow!

As long as I can manage my rib I'll continue surfing....just avoiding the 8 foot plus days. My recent trip to the Mentawai Island resulted in a serious bounce off the coral reef a long two wave hold down and a snapped board. I won't be doing that again!

Doctor put in a request to my insurance (international plan until i go on Medicare Sept. 1) for Zytega approval to be used with Lupton. I have a bone DEXA scheduled in 3 weeks.

Thanks again and thanks for this site.

[Rmanns]

I also have mets on ribs They break. It hurts Zometa helps a lot but I've had to learn to be more careful. The good news is yes, you have years left. The less good news is you are going to have to accept fatigue and weakness. It is inevitable but it doesn't have to stop you if you are just a little smart and adjust.