Here’s an update on what’s going on with me. I’ve had three Xofigo infusions, but we’ll be suspending that therapy for a bit so I can have palliative radiation on my spine. I was lucky for years that my most active lesions were in my rib cage rather than spine, but that luck has ended. My T-8 vertebra has a tumor that’s causing a lot of pain in my back and abdomen, and other vertebrae are involved with cracks and compression up to 50%. The pain going from bed to vertical is steep, but once I’m vertical, I’m functional. Pain management is with oxycodone, 5-10 mg every 3-6 hours depending upon how I feel.
The Xofigo is actually helping the rib cage. I’ve had less pain at the known lesions since the second infusion. I had appetite, nausea and GI issues from the Xofigo, but as they often say, “there’s a pill for that.” In particular, Zofran has helped a lot with nausea, and my rapid weight loss has slowed.
Tomorrow I will have my first Xgeva shot, then Thursday I will have an MRI and CT simulation for the radiation. I hope that means the radiation will start early next week. I’m expecting 5-10 sessions. We’ll get that nailed down on a Thursday.
My PSA has jumped from 50 to 218 over the past three months. I expected an increase, but I hoped it would still be under 100. My MedOnc, my husband and I had a good conversation about whether to start Xtandi. We concluded we would wait a few weeks with so much already changing at the moment. My insurance is also changing at the end of the month, and I don’t want to have the Xtandi discussion twice (“Yes, I’ve already used Zytiga. Yes, I’ve already had the ARV7 test.”).
We are going to do some DNA testing to determine whether I’m a candidate for PARP inhibitors.
My husband has joined our group, so he’ll see this, but I don’t think he’ll mind me sharing that concern is beginning to impinge on his optimism. I wish I could relieve him of that. I’m not naive, but I think this is yet another thing to attack and handle rather than impending demise. I have only one long bone lesion, and it doesn’t seem to be doing much. I also don’t have any known visceral mets.
That’s the report from here. Happy Hanakkah to those of you who observe it.
Yost.
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YostConner
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wishing you the best with this turn of events. I hope the radiation helps with the bone pain from the spine. ...and I can only repeat again...I wish you the best!
Yost, I am praying that the new treatments will help. I'm an optimist so I believe it will.
Nick
Sorry to hear about your progression. I'm hoping that Xtandi is going work for you. No visceral mets or ARV-7 mutation are both positives for you. Hope that means your cancer is still hormone sensitive and responds to Xtandi. Hope the radiation helps too. Keep us posted, wishing the best for you.
Yost, I am sorry to hear about the progression. I feel confident the xtandi will work well for you. I am sorry you have pain, I hope the radiation works well for that, It worked for me. I had pretty bad hip pain, and developed a bad limp,and after just a few sessions with radiation the pain was gone and I returned to a normal gait. I wish you the best .
Thank you for your update. So sorry that you have to deal with this, but hopefully it will give you decades and decades of quality time.
I hope you know that all of our prayers and wishes go to you and your husband. It is a fact that in many ways it is harder on the caregivers than the one with cancer. I know that I could not handle it if my wife had cancer and I was her caregiver. Please tell your spouse that there are a lot of caregivers here. Please encourage him to post about any concerns or worries he may have.
I have followed your posts for a while now and consider you a friend. Please know that both of you have more friends pulling for you than you could ever know.
Yost, my fellow Barbra fan, thanks for the update. You are in my prayers every single night. I’m hoping this treatment will get you to the next treatment, and then the next...until the cure is found for all of us. I really appreciate all the info you are sharing. Welcome to Sam also.
I don't know what I can say except to add my best wishes to those of everyone else who has responded. Everyone in the group has benefited from your many postings and we are all rooting for you. You are a man of wisdom as well as courage.
Yost, we are all pulling for you! I had a painful T8 met, too. Was on oxycodone and OxyContin until I received tremendous relief from radiation. Hope you get the same relief very soon! We are all praying for your relief and a tremendous response to your treatment!
James
Grit your teeth and dig in for the long haul big guy. You are a world class battler and I'm sure you are rolling up your sleeves for the next fight.
Keep kicking the bastard. We are all Prsyibg for you.
Yost, your posts often gave me encouragement and optimism, may this pain be temporary and the medications work for you very soon. Praying for a quick turnaround in your favor.
I wish you well Yost and reflect all the other positive comments here.
Sorry to hear that you are suffering so much pain. Pain IS the enemy. Pray for you to get through this chapter.You are inspirational and we need your wisdom and compassion. Take care !
Yost, Happy Hanukkah to you & Sam. Obviously you're going through a literally painful phase right now. But as I read it, you should have a good long time ahead of you. I appreciate your posts very much.
If you do start back on Xofigo later, be sure to tell them about the amount of your rapid weight loss. The Xofigo dose may need to be lower, per the prescribing information formula, if your weight has gone down from what it was before. And keep watching those blood levels like a hawk.
Do you think some kind of back brace/garment might help with maintaining spinal stability and easing pain during movements from being prone, or sitting, to the vertical standing position?
I hope one of the treatments in your future will bring you some really good results and help to melt that pain away.
These times of physical limitations and fear and stress are really hard for us, and our caregivers. Your Dear Husband needs support, too.
Yost, thanks for letting us know how it's going. I am learning a lot about what others are going through and learning that I need to be humble and learn from you guys.
Yost, I do not have vertebral tumors, but the Xgeva shots I had for low bone density had little side effects for me. I hurt when I get out of bed like a shooting pain on the right side that should be checked out. Thank you for all your help all these years. Happy holidays to you and Sam and keep us up to date!
Can I ask you if you have sleep apnea, by any chance? And do you get at least 8 hours of sleep at night? I was talking to my doctor yesterday discussing my sleep apnea and how important it is to wear the CPAP mask to make sure I get the proper amount of oxygen when I sleep at night and how the oxygen in our bodies make our immunity stronger to fight the cancer. Yesterday I Googled this subject of getting enough oxygen in our bodies when we sleep that may prevent the spread of our cancer. The articles mentioned how NOT having enough oxygen might correlate to having a higher chance of having cancer, etc. My doctor is EXCITED about making sure people with sleep apnea get and use a CPAP machine at night. I always felt that even if I didn't have sleep apnea, it would be a good preventative measure to use a CPAP machine when sleeping and getting 8 hours of sleep at night. Perhaps you can Google it too. I never go to sleep without my machine on. I think it helps my body to keep the PSA undetectable by forcing the oxygen/air into my lungs when I sleep. Just a theory of mine. Take care and the best to you in our fight.
Your posts have given me encouragement and optimism! My bone met pain was relieved by radiation so I am sure you can look forward to some relief. Your statement about this is yet another thing to attack and handle rather than impending demise is another example of how your words impact me. Sending you positive healing energy and love my brother.
I just want to tell you how much I really appreciate your updates Yost, I kind of think of them as a peek into my future. I am curious about the fact you are only now starting Xgeva. I was put on it as soon as scans indicated metastasis, a little less than a year ago. I had no physical symptoms. Currently I’m still responding to Zytiga. All my best to you in your fight and life in general.
The Xgeva decision followed a year-long conversation. I was not excited to start it. I believe in looking forward and not second-guessing these decisions, but this is one where starting sooner may have helped. Glad to be on it now.
Hi Yost, i’m Sure that with your knowledge and attitude your going to find the next successful treatment! The medication recently discovered to affect and kill prostate cancer (lung worm medication I believe) looks promising. It may be worth seeing if they are starting any trials! I hope they can alleviate your pain soon. You are in my thoughts and prayers but your a survivor and if anyone can beat this situation you can. Welcome to your husband my wife reads all the posts here and it has helped her understand my journey. I really do feel for our partners as they have to be constantly uplifting and positive which must be so hard.
I wish you nothing but the best Yost. Our journeys sound very similar. I just completed daily radiation to the spine(third time with radiation, last two were groin area). Helped immensely. Going for second Xofigo today-PSA at 71 ( had jumped to131, now back down). Doing monthly firmagon, and Xgeva(now once every 3 months, been doing for a year. Ten rounds of chemo-not sure how much that helped?
Wish you the best with your radiation. Praying it gives u relief.. I had to sleep sitting up, now can lay down.
Keep us posted. Best of health in 2018 to kick this stuff out the window!!!!
Thanks, Hankwhy. I had the last spinal radiation session today. I’m pretty sore, but I know that will improve. I also had confirmation today that I will resume Xofigo next month. I’m very happy with that development. Happy New Year!
YES! Is did EXACTLY that! We were puzzled. It also jumped after 3 rounds of chemo.. then went down slowly (went back up after 10 rounds)...
Best to you Dan-in 2018. Experiencing lots of fatigue-so my wife says -then rest! This cold weather makes me feel like it’s also a good excuse! Haha!!
How are things with you? I have not been on website as much lately.., I sure like to hear your valuable knowledge & input into all this-crazy disease. It’s tough, that’s for sure.
Wow Yost! I'm just finding this. Thank you so much for the update. The radiation will help! It knocked Elgies right down for years and still down. I'm glad there's a pill to help your nausea and one to touch on some of your pain. Elgie uses ginger candies suggested by Charles Eric Winter 💖. They help him most of the time. I'm glad you're going back to Xofigo. I'm glad you're starting the Xgeva. I don't like the rapid weight loss but glad it has slowed. We're all routing for you in one way or another......either prayers, good wishes, support, good vibes, healing hugs or whatever 😊 You're just one great part of this family and we want you better.
Happy Hanakkah to you and your family and friends and to all who observe this special holiday.
Welcome hugs for your husband Sam.
Healing hugs, prayers, Good wishes, Good vibes and any other good thing that can help you from me.
You are loved....... just look at the friends you brought out of the woodwork 💖💖💖
Thank you, Jackie. I've finished the radiation, and I'm healing from it. It did, indeed, help the pain I was having. The pain I'm having now seems to be inflammation from the radiation and should continue to improve.
I missed wishing everyone a Merry Christmas, but there are four days left, so Merry Christmas to those who observe, and Happy New Year to everyone.
Up and down. I’m back on Xofigo. It’s messing less with my digestive tract than the first three injections, but I still encounter fatigue. That’s especially true as I continue to travel with my family. The last couple of days I’ve had lower back pain again, but it’s nothing like six weeks ago.
That radiation went well. The abdominal pain that started that was resolved. I will probably have flare-ups at my spine because of compression and cracks, but I'm very glad I did this.
Thankyou for your input. I am considering radiation on my spine as well for my cancer. I am greatful for you and your experience. I also hope you enjoying your travels.
Since you're considering it, please be aware I was sore for about a week after we completed the sessions. That's not unusual. I would do it again if my doctor recommended it.
Hi. I had shot #6 16 days ago. Same level of fatigue. I need about 12 hours sleep per day. That can include a nap. I still have notable diarrhea from this cycle. My appetite seems to be improving, but I still don’t want spice or grease. I’m looking forward to starting enzalutamide next month. And I have a grandson coming in July, so life is terrific!
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