It really sucks that your doctor knew this information and didn't share it with you. Do you have options to switch to another doctor or hospital? Do you have any cancer hospitals nearby that are certified as Centers of Excellence? We have Memorial Sloan Kettering in NY. These centers are supposed to offer the newest/best options for us. I also found out that my insurance company, Empire Blue Cross, has a special program for those of us that go to Centers of Excellence. They waive all copays and cover doctors that are outside of my regular network. It was a shockingly great discovery for me.
I struggle "mightily " with the side effects of ADT ( Lupron & Zytiga). I have accepted this result as part of getting well. I've done 8 mos and have 16 to go. It is soul crushing but "do-able". Good Luck to all of us.
I was on Eligard for three and a half years. Side effects were major but the benefits are tremendous. Keep taking it because if you respond, you may do pretty well. I took it with Xtandi for 26 of those months. Make sure to take vitamin D and calcium and a baseline bone density. Osteoporosis is possible if you are on ADT. Best to you.
Thanks for your input. I take all the vitamins. My wife is a fantastic care giver and won't let me go astray on the diet and supplement front.
Funny you mentioned "osteoporosis " I was just diagnosed. I expected it. Being careful with activities that might cause a fall.
I hope your doing well. It sounds like your on a tough journey as well.
Best of luck.
I was on Xgeva for 2 1/2 months after my last chemo infusion. I developed necrosis of the jaw, as a side effect. A hole in the soft tissue in the bottom of my mouth opened up. I could feel bone with my tongue. Ultimately, the necrotic bone tissue came partially lose and dental surgeon pulled it through the hole. The hole closed up on its own. It was kinda cool in a weird kind of way. No problems now, and, no pain ever in the whole episode. Off the Xgeva. This is a rare side effect by the way. Good idea to watch for signs of it anyway.
I was on Eligard for three and a half years. Side effects were major but the benefits are tremendous. Keep taking it because if you respond, you may do pretty well. I took it with Xtandi for 26 of those months. Make sure to take vitamin D and calcium and a baseline bone density. Osteoporosis is possible if you are on ADT. Best to you.
I was diagnosed in November 2022 with Stage 4 with metastasised throughout my bones all the way up to my scull. Early days I was in so much pain that shifted from my back to my gut to my legs. Night sweats made for sleepless nights and the pain in the day was unbearable, Started Elligard in November and Xtandi two months ago. Virtually pain free within a week of starting Elligard and no real side effects from Xtandi other than swelling in my right foot. Calcium and Vitamin D every day. Are you still on Elligard, Cesar52?
I was diagnosed in November 2022 with Stage 4 with metastasised throughout my bones all the way up to my scull. Early days I was in so much pain that shifted from my back to my gut to my legs. Night sweats made for sleepless nights and the pain in the day was unbearable, Started Elligard in November and Xtandi two months ago. Virtually pain free within a week of starting Elligard and no real side effects from Xtandi other than swelling in my right foot. Calcium and Vitamin D every day. Are you still on Elligard, Cesar52?
No. I have been off all treatment since August 2022. But my PSA is undetectable and despite the fact that I got hit with everything: surgery, ADT, radiation (39 sessions) and Xtandi , I have no regrets. I needed aggressive treatment for a very aggressive cancer. I strongly believe Xtandi made the difference. It’s an unbelievable drug. Best to you. Stay positive and hope for the best.
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I was on Eligard for three and a half years. Side effects were major but the benefits are tremendous. Keep taking it because if you respond, you may do pretty well. I took it with Xtandi for 26 of those months. Make sure to take vitamin D and calcium and a baseline bone density. Osteoporosis is possible if you are on ADT. Best to you.
Thanks for your input. I take all the vitamins. My wife is a fantastic care giver and won't let me go astray on the diet and supplement front.
Funny you mentioned "osteoporosis " I was just diagnosed. I expected it. Being careful with activities that might cause a fall.
I hope your doing well. It sounds like your on a tough journey as well.
Best of luck.
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1 ReactionHi so the last injection is xgena for bone pain ! Was the worst he was sick for 5 days ! Yesterday stayed in bed all day fatigue 😢
Hi he took a new drug infusion! X Geneva not good pain and fatigue for 5 days ! He is sad 😢
I guess all meds have side effects. So my treatment always has meant benefit/risk assessment. Makes life feel too heavy, deep and real sometimes.
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2 ReactionsI was diagnosed in November 2022 with Stage 4 with metastasised throughout my bones all the way up to my scull. Early days I was in so much pain that shifted from my back to my gut to my legs. Night sweats made for sleepless nights and the pain in the day was unbearable, Started Elligard in November and Xtandi two months ago. Virtually pain free within a week of starting Elligard and no real side effects from Xtandi other than swelling in my right foot. Calcium and Vitamin D every day. Are you still on Elligard, Cesar52?
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2 ReactionsAmen to that brother.
No. I have been off all treatment since August 2022. But my PSA is undetectable and despite the fact that I got hit with everything: surgery, ADT, radiation (39 sessions) and Xtandi , I have no regrets. I needed aggressive treatment for a very aggressive cancer. I strongly believe Xtandi made the difference. It’s an unbelievable drug. Best to you. Stay positive and hope for the best.
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