What are your thoughts on Pain Control

[CSHobie]

A quick note about me: Dx at age 52 Jan 2020 with PSA at 170. Eventually got started on ADT in April 2020 with PSA at 300. Gleason 7 3+4. Extensive bone mets all over my skeleton , as well as a few Lymph nodes. I had minimal pain, mainly back ache, which I thought at the time was due to a back injury I got in 2018. Now I can see that the event in 2018 was probably PCa already. Anyway, treatment: ADT , Eligard, Zytiga 1000mg per day, and 5mg Prednisone.

Anyway, at PSA 300 I had minimal pain. A few months later various aches and pains. At 6 months after starting ADT I was in significant pain, and chomping down 8 Tylenols per day.

Meanwhile my PSA at the time dropped down to about 0.2. November I had Orchiectomy, and dropped the Eligard, continuing only with Zytiga and Prednisone. Amlodipine 10mg was added to bring my BP down.

By December my PSA had dropped to about 0.05 and pain meds are up to 30mg MS Contin and 200mg Pregabalin per day.

Unfortunately when I went on Holiday, and ran out of MS Contin and could not get it anywhere, so I switched to 50Mcg Fentanyl patches instead.

For the last 6 months the Fentanyl has been working fairly well, but now my pain is again all over the map. Since December my PSA dropped even more to 0.01, which I am very thankful for, but why is my pain just going up?

I would like to ask the group, for ideas on how to get the pain under control.

My pain is a 2 component problem: 1, general pain in my bones, legs arms, pelvis, ribs etc. That seems to be contained by the fentanyl quite well. 2, is a sharper more intense pain coming from two spots on my spine T and L.

A Dexa scan in March showed L spine with a T score of -1.8. The rest of my body is hovering around a T score of 0.3.

So to recap. Treatments, ADT, Zytiga, Prednisone , Amlodipine.

Pain meds, Fentanyl patches 50Mcg , Pregabalin, Morphine tablets for breakthrough.

Looking forward to your ideas, all the best to all of us.

[mikell]

With what I know now, I think I would go right for chemo. I did Xofigo which initially did help with bone pain and brought my ALK reading down into normal range, but when the very expensive treatment was done, my Mets appear to have shot up and my PSA went from 10 when starting on Xofigo to 600 after the end. Chemo has caused the PSA to drop consistantly, from 600 to 100. Going to get the next pre-chemo blood test in a few days. Hoping.

[Kaliber]

Your two opiates...your main pain killers .... are serious stuff. Those are up top among the “ good ones “ . I feel pretty confident that if you worked closely with your pain management person ..... that you could get a balance out of those that worked pretty well. You might make changes like add an oxyContin component , maybe switch the perspective to that your fent is your break thru and switch to time release morphine etc. it’s a complex dance with minimal dangers if done improperly. Your pain management people are expert at managing a dance like this. As always with the opiates you have in hand, make sure your narcan nasal injector is in an easy to access central location and all the people around you are “ totally “ familiar with its application. If you don’t already have the narcan , ask your team for it , just in case.

Best wishes CSHobie 💪💪💪👍👍👍

[Hidden]

Is bone pain a SE of Low T? Have you received any medical opinions that make sense or do you get the obligatory shoulder and a script for opiates?

2 years ago I was 53 and Dx'd with pca. G9 (4+5) but loco regional after rp, bone and CT scans.

At least you are responding well to zytiga...here's to a long ride. 🍻

[Hidden]

Pain “IS” the enemy .. do what you’ve got to do! Pain prevents healing . Give me the strongest stuff if I need it . Good luck Hobie ! 👍

[CSHobie]

Thanks to all for the replies. My Palliative specialist is suggesting Methadone as an idea. I am scared of that name. I think the Fent was working at Mcg, so I was thinking if I go up to 62Mcg, or 75 until I get used to that, and then up to the next step, that will carry me for a year or more by the time I get to 125. Fent at high doses are when it becomes very dangerous.

Has anyone tried Methadone?

[Hidden in reply to CSHobie]

Using my wife's experience, she was on the 125 fentynal patches and used oxycodone or methadone for break thru pain.

Nothing to be afraid of with methadone...its just another opiate med.

[CSHobie in reply to Hidden]

Thank you for that personal report. I guess I am kind of unsure how methadone works. Being used as something to ween people off heroin, but it is an analgesic, and a good one I guess.