Palliative Radiation for pain

[Sipj]

After one month post palliative radiation to hips and femurs, my husband still has bone pain. No relief. Anyone have this happened and have you found something that did help?

He is taking large doses of oxycodone to manage the increasing pain

Stage 4 mCNPC having his 5th round of docetaxal today, Lupron injections every 3 months, solid Mets from top of skull through shoulders, spine, ribs, pelvis, hips, bilateral femurs Last PSA was 60 one month ago (down from 350 at original dx February 2021)

🙏

[Tall_Allen]

Xofigo may help.

[cesces]

Opioids are only good for short term use

Over the long term they sensitize to the pain so you need more and more and more.

They aren't a good option unless you are in hospice.

[Bluebird11]

My husband went through this. It got to the point of needing palliative care. I don't know your circumstances or your doctors advice so it's difficult to say. But after many years that last 6 months especially after surgery which weakened him, though had to for QOL, we did pain meds. We had a palliative group which turned out to just be a hopeless patch.

Palliative care where they close at 5pm and weekends is not the answer in this situation. Yes, palliative is not hospice, but should be more available, especially during Covid crisis where ER is the only other choice.

Honestly, looking back, I should have experimented more with cannabis CBD.. 4x1 thc.. or strong CBD. We did that for many years. From our personal experience without a trial it was good for us, it served us. I had to stop because he had surgery!! Maybe not a popular choice on here, but he did live 14 years WITH stage 4 and we did cannabis after a few years.

We also used DMSO and if he can get in and out of a tub, clay baths were relieving. The problem was that he couldn't get in and out after a while.

It's a tough situation. I'd question your doctors.. put everything on the table and then weigh in on what you want to try. I'm sorry - pain is the worst thing for everyone to be with.

IF you do go to hospice, if there is nothing more than pain relief, be vigilant and any red flags do something about it. We chose the wrong hospice as I can see now! It was all smoke and mirrors.

Also, steroids did help during and after radiation. There is inflammation after radiation for months.

I can only say what we did. I can't advise, and everything I say is hindsight. What I can say is when there are breaks, enjoy each other. It's the best advice in every respect. May you find relief. If you want to personal message me, I may be someone where you can say how you are feeling. I hope you have help and support.

[Sipj in reply to Bluebird11]

Thank you for that…the pain is the hardest. And knowing it is going to get worse is unimaginable. He is doing heavy pain medication and seems to runaround ok for about 4-6 hours a day, then hits a wall. I am grateful for those hours. He is not one to complain so I try to advocate to the doctor for him as much as possible. But it’s hard when you don’t know the right questions to ask. I appreciate your honesty and advice. I do take it to heart 🙏

[Bluebird11]

When you say it's hard when you don't know the right questions to ask. Get help from others about what options and what to ask. If you do everything you can now, you will have no regrets later. The questions I would ask would be the tough ones. While we don't know about timing, are there any trials he can be put on, or first, 'ask for help'.... the invisible kind to bring to you the questions or people who may support you in this. And, of course, you are the advocate for him right now... please don't be afraid to ask wherever needed.

I so wish we all didn't have to go through this painful disease- you do need good pain management. Finding it is another story. We thought we did with palliative care, though today's medical support is questionable. I encourage you to take up whatever strength you have to push through and get good pain management first. Watching bowels is integral with this since the side effects of the drugs create that second problem of bowel movements.

Find a compassionate nurse to your doctor, ask again here..... I wish I could help you more- but you can do this. The love you have will help you. It's tough to feel what you feel. Is there anything that can turn this around even some without bad side effects. Zoom with your doctors. I apologize if I am intruding or you sense pushing. I don't mean to- I would just like to transfer strength to you.