Part 1 - healthunlocked.com/advanced...
So i drive 30 minutes to get to the clinic, spend 30 minutes, at the clinic, drive 30 minutes to get home.
I see the NP (who confers with the MO as needed before and after my visits).
1. They don't think it's cancer pain.
2. They don't know if I am having a bad reaction to Eligard, but don't think so.
3. They have agreed to switch the prescription from eligard to firmagon but only because I'm pushing it, so this is all on me.
4. They think it may be neuropathic pain.
5. If its not cancer pain its not their problem, if it gets worse go to emergency
6. I didn't get a firmagon injection but I do have an updated prescription.
7. Their preference is to wait 2 months before giving me the injection but I can start next week if I push for it.
8. I need to go out into the regular health care system to track this down, it is not something they coordinate.
Honestly, I am no better off after visiting them than I was before I went. Treating the pain is not their problem and my efforts to try and spur some action is viewed as me trying to dictate my own treatment and overridding the decisions of the MO. I'm viewed as some kind of a drama queen for trying to force them to collaborate with me to come up with an action plan to address this issue.
Based on all this, here is what I am going to do:
1. starting with my PCP explore the neuropathy angle.
2. the next time I get a major pain episode, check myself into emergency
3. delay firmagon for a month so I'm not overridding the judgement of the MO.
What I have accomplished:
1. put it on the radar that I may be having a bad reaction to eligard and got them to acknowledge that as a possibility.