Advanced Prostate Cancer Update and Xgeva

Hello everyone I am posting for first time, to update everyone on my condition, after reading posts and looking for others in my condition to converse with to share ideas. I also know where doctors are the best at what they do its also a patient and doctor responsibility together to make a plan for the treatment. I am adverse to Chemo and Radiation as I have seen family members, with advanced stage 4 cancer with Mets and others go though this process with not much QOL in the end and the Chemo cannot cure it any way. The Chemo makes them sick, weak and not much QOL afterwards. I think Chemo has its place when cancer is localized or maybe in stage 3 but not in terminal status. They have told me I am Terminal and not curable and they can only slow the cancer down, not cure it. My PSA was 9,000. So with that I have been 20 months with ADT using bicaludimide tablets each day ( after becoming allergic to Zytiga) and Lupron Shots each month. Took PSA down to 1.75 lowest and now 2.0. MY MOC put me on Xgeva, for bone mets, but in 20 months I developed ONJ and my teeth and left jaw has sever pain. So my MOC took me off the Xgeva and my jaw pain is better but not completely gone. My teeth continue to have pain and gums in back of my mouth softening and becoming detached from back tooth. (like a floppy piece sticking out). IT has not progressed as fast as they thought but my dentist said ONJ would continue and is not curable. But I have had great days for 20 months, great QOL. I remember my cousin I took care of for a few years, he had severe bone mets like me, threw everything in the book at his cancer and only lasted 17 months. So I am grateful to have good QOL so far. My MOC wants to put me on Xtandi but Its terribly expensive and I have to wait till April to see how much Medicare will cover it. We will go from there. For 6 months I was pain med free, but now with ONJ and off Xgeva, I am back to taking my Hydrocodone just once a day when needed. Going to talk to hospice for interview to talk to them about when it happens, when I need stronger pain meds and what to do. This should be easier for my wife. I am all about making her life more comfortable and with out alot more stress added, as I know its hard for her to see what I am going thru. Just taking the good days that I can for now, playing it day by day. Right now my lower back hurts, my hip joints in my legs hurt and legs feel heavy, right arm shoulder sockets also ache, now along with my teeth and lower left jaw. If I sit for 20 min or so when I get up I have to move slow as it hurts to get started bones snap and crackle, when I move. When I get my headaches thats when I take my pain meds mostly. But with a cancer tumor in my brain and 2 aneurisms I can expect a little pain here and there. Anyrate I pray for you all and know others are much worse than I so my heart goes out for everyone, especially the wife's. Take care and I will update as things go along. And if I can give a good word every now and then I will. Love you all, take care and may the Lord our God watch over and help each and everyone of you and may you be pain free!

[Tall_Allen]

Every cancer is different, and the medicines used have different toxicities. Docetaxel, the kind of chemo used for prostate cancer, is one of the milder ones. Used earlier, it is more effective and has fewer side effects. Tragically, many patients share your fears and wait too long to use it. It is also one of the best medicines to take to relieve bone pain. QOL is significantly better among patients who use it than among patients who don't. It is also fully covered by Medicare.

[Hidden in reply to Tall_Allen]

Thank you I did not know it was a milder one.

[Schwah in reply to Hidden]

The guys here will tell you it’s not that bad and when it’s over it’s over. Lots of good suggestions here to minimize side affects. Even ways to avoid losing your hair if that matters to you.

Schwah

[Skipper238]

Thank you for your post. I am new to this situation, so I am grateful to you for sharing your journey in detail.

[j-o-h-n in reply to Skipper238]

Greetings Skipper,

Please tell us your bio. Age? Location? When diagnosed? Treatment(s)? Treatment center(s)? Scores Psa/Gleason? Medications? Doctor's name(s)?

All info is voluntary, but it helps us help you and helps us too. When you respond, copy and paste it in your home page for your use and for other members’ reference.

THANK YOU AND KEEP POSTING

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 12/06/2021 10:37 PM EST

[leo2634]

I was in Xgeva for a year and had to be taken off due to jawbone problems. I had to have dead bone removed twice with oral surgery. Leo

[Break60]

Really sorry to hear of your painful experiences. In terms of Xgeva, I was put on it when I was on Lupron because Lupron can cause osteoporosis. I went off Xgeva when I stopped Lupron and started using estradiol patches which don’t have all the cardiovascular and skeletal side effects of Lupron. Thankfully I never had any jawbone problems while on Xgeva. I also had bone density scans about annually and do weight training to strengthen bones . I’ve unfortunately had three bone mets in the past which I’ve zapped with SBRT.

[Hidden]

Hi, when my friend took Doxetaxel he said he always felt like he was coming down with the flu. But he had little nausea and he could still get up and do things. He just didn’t feel great. Some people, I know, tolerate it better. And some worse. He is now on Jevtana, which is a type of chemo. This one has much less severe side effects. He actually has days where he feels very good on it. And then days when he doesn’t. But as long as you can get some good days out of a drug we call it a win.

[j-o-h-n]

Greetings Eyeofthecyclone,You are in the best site for information regarding Pca. I'm sorry you're going through pain and wish I could tell you how to manage it. I use humor to fight the beast....works for me.

Stay with us, ask questions and keep on fighting.

Btw where are you located?

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 12/06/2021 10:34 PM EST

[Hidden in reply to j-o-h-n]

Thanks J O H N lol. Located in Indiana, should be in my bio. I am 58 and counting.

[j-o-h-n in reply to Hidden]

To Eyeofthecyclops,

Thank you for your response. Now we know "Whos-u-are"...... (58? I have a pair of jeans older than you)....

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 12/13/2021 7:20 PM EST

[Hidden in reply to j-o-h-n]

Did you mean 58 was the waist size of your jeans?

[Hidden in reply to Hidden]

Almost, any more steroids and it will be lol

[j-o-h-n in reply to Hidden]

That's when I played all of the following defensive positions at the same time in high school football: Left Tackle, Left Guard, Center, Right Guard, and Right Tackle....

They didn't call me slim for nuttin...........

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 12/13/2021 10:39 PM EST

[Hidden]

I agree I too use humor and the pain is just annoying. Doctor is putting me on Xtandi now

[Kevinski65]

Are u on ordinary medicare? If so did you sign up for part D prescription coverage? Is Medicare covering Xtandi? I'm in a trial and get Xtandi for attending the trial. It's ending soon so I'll have to get Xtandi somehow. My moc said it ' should be ' covered because it's an approved drug. These are famous last words as far as I'm concerned.

[Hidden in reply to Kevinski65]

No I am not on medicare at all right now, waiting till April of 2022 thats my date. Also Xtandi on Medicare still has approximate $448 copay right now as a level 4 drug. But you can have that waived if you meet Xtandi's criteria. Its a credit card that pays for what the insurance does not cover. Go to Xtandi's web site and call the number. Good Luck and keep us informed on how your doing.