Palliative care - medications and routine

[ArabianNights]

While most of our forum is focused on treatment, I thought it would be helpful for others to post our palliative care routine. Our current treatment has made a huge difference and greatly improved quality of life.

My dad declined very suddenly with PCa on July 17. He has a unique situation with daily high fevers - something we can not find much information on for prostate cancer. It took us about a month and a half to find a routine that has managed the pain episodes and fevers. Prior to the sudden turn, we were so focused on treatment that we had never given much thought to palliative care.

Our medications are as follows:

Pregabalin - 150 mg twice daily (manages nerve pain)

Naproxen - 250-500 mg twice daily (for inflammation and managing fevers)

Dexamethasone - 2mg once daily (for inflammation, energy and appetite)

Hydromorphone through subcutaneous pump - Continuous dose provided hourly, with additional ability to provide more if needed for breakthrough pain

Tylenol - 1000 mg provided as needed (with fever spikes)

Lorazepam - 1mg (for sleep and anxiety)

We live in Toronto, Canada and all our care is provided at home right now. A nurse and a personal support worker visit daily. The doctor visits as needed. As things change, we make updates to medications and doses as needed.

We have also had a blood transfusion for low hemoglobin and have an oxygen tank in case of shortness of breath.

Prior to finding the right doses, my dad had such intense pain episodes that he would be crying, screaming and shaking uncontrollably with fevers. It was torture for him and traumatic for our family to witness.

With the new pain management regime, we have had 1 major episode in 4 weeks. He walks around with a walker inside the house and in the garden and we take him on outings using a wheelchair. We are able to enjoy his company and I can truly say we have greatly improved his quality of life.

To read about my dad's case please refer to my previous post: healthunlocked.com/advanced...

I hope this is post is helpful for others who are going through similar.

[Shooter1]

Thank you. We are all going to be there one day and info in advance will be a great help for me and my wife. Your post is getting filed away in my cancer care file. Life is Good, I'm glad you and your dad can enjoy it again....

[Darryl Partner]

This video should be helpful. You can also see the World Trade Center in NYC outside my window. youtu.be/4scjZAMtUyA(Not working as expected?)

[ArabianNights in reply to Darryl]

Thank you for sharing. This video is very useful - misery management is truly the right word. I wish we had gotten a palliative care doctor on our case a lot earlier.

[Hidden]

Thank God for the new regime . 🙏

[Kaliber]

Hi ArabiaNights …

Thanks for that great comfort care info , it’s very useful. I hope your father can hang in there for a good long time and continue to be comfortable along the way.

Best wishes ❤️❤️❤️

[MarkBC]

I appreciate you posting this information. Thank you. I hope your family has many more good days to build memories with your father.

P.S. I was born and raised in Oshawa. 😀

[Tak-Druk]

Thank you so very much for sharing this! Very important and helpful information, both in a practical sense, and I personally find it comforting to consider as well.

[Yank66]

Glad your dad finally found some relief. Thank you for providing this information on managing his pain and anxiety. About a month ago we were introduced to a new-to-us PA at my husband's oncologist. I was a little bit taken back when we found out she was a palliative care specialist. It was a good introduction to what she could do before we actually needed it. And what a kind, caring person she was. Not sure if other oncology groups do this, but we thought it was a great asset to be aware of.

[j-o-h-n]

Thank you...... I'm glad your Sweet Dad is up and about.....Give him my regards and tell him he's lucky to be surrounded by 5 Gameela women.....

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 09.23/2021 10:17 PM DST

[Spyder54]

When your Father suffers, the whole family suffers. Gosh I hope this new regime is durable and lasts many years. My best to you and your family,

Mike

[NWLiving]

Very helpful thank you

[Yadifan]

Wishing you lots of good days with your dad. And lots of cookies/cakes/pies with maybe a carrot once in a while. Or better yet - carrot cake. Thank you for posting this. I saved it and am hoping to not have to refer to it for a long while but I know it will be helpful.