Long term joint pain

GoWithTheFlow

I finished chemo in May 2013.  I had 3 doses of AC, and 12 of taxol.  Some nueropathy in fingers, toes and feet during chemo, Didn't have the 4th dose of AC because of hand/foot syndrome, but otherwise got through chemo relatively well.

In October, I hit the side of my hand on the doorframe while carrying the laundry into my bedroom.  I broke my pinkie finger in three places.  

I had been on vicodin on and off (mostly on) from December 2012 at diagnosis, until late September when my onco decided she wasn't giving me anymore.  No plan to figure out why I was still in pain, no plan to find something else that worked, just cut me off like she was done with me.

Saw her in December, at which time she told me that chemo  doesn't cause weakened bones, and that my joint pain wasn't from chemo because I was too far out.

My family doctor, who finished chemo herself a year before me, told me she STILL has joint pain.  I had my surgeon forward my records and info to another hospital's pain management clinic.  I'm seeing them, and the pallative care unit at the cancer center there.  I was put back on vicodin, which has helped with the joint issues, we changed up the nerve pain meds which have helped, and had a trigger shot in the breast/underarm area which has helped the burning pain ease up.  They are saying the pain in my breast area is a combination of nerve/muscle pain.

My question is, who else has long term joint pain?  Most of mine is my hips, knees, ankles.  When I wasn't taking vicodin, I was afraid I wouldn't get up from the floor.  I slept on a blow up mattress one night and it took me almost 10 minutes to get up to go the bathroom.  It's better on the vicodin, now I just feel a bit stiff, but it's easier to get up when I have to get down low.

I'm extremely angry at my onco for leaving me hanging, and for refusing to accept ANY responsibility for side effects I'm feeling.  My hospital where I had treatment boasts about their "team approach".  I did everything my team through at me during treatment, and tried to do it with a smile on my face, and I feel like my team desserted me after treatment.  

I see my onco this afternoon, and my plan is to tell her exactly how I feel (I already gave her hell during my december appointment, but I wanted time to calm down and see how things play out).  I want her to know HOW she made me feel, how I felt desserted, and that my symptoms are not only not uncommon, but fairly normal.  Apparently she's the only one in the world who thinks the side effects from chemo disappear magically when chemo is done.  I don't think ANY patient should be left hanging as I was.  

At that point, i will ask to be changed to a different onco.  If she can't be bothered with any of my side effects, how can I trust her to be bothered with any future issues that come up that could be a recurrance?

Nettie1964

Wow, those words could have come right from my mouth about the MO. however my PCP wasn't much help. I finished chemo in Aug 2013 and the pain had really ramped up. 

Hope you get relief.

The worst for me is the worry about mets, but mo doesn't think a scan is needed.

GoWithTheFlow

Thanks for your response.  When I met with my MO today, she was telling me about how she recently read about patients being left with burning pain in breast area after mastectomy and how a shot will help ease the pain.  I really wanted to roll my eyes.  I explained I had it done a month ago at the other hospital, and yes, it works.  I didn't ask to switch yet, because she continued to apologize for what happened, I continued to express just what the did wrong and how it could have been handled better.  If they are open to change, I'm open to offering suggestions on how it SHOULD have been handled.  Perhaps by sharing my experience with them, the next patient who comes along with pain may be treated better.  I just feel like if they aren't able to get a grasp on what is causing the pain, then they need to know who to send patients to.  If I wasn't so persistent and demanding, and didn't throw my hissy fit to them asking for a referral to pain management, I'd still be suffering terribly.  If I didn't have a friend who was already being seen by the other hospital's pain clinic and she stressed to me how good they were, I would't have gone there.  

I like their multi-faceted approach.  We started with changing nuerontin (which made me too sleepy to take more than once a day at bed) to another drug I tolerated better, and built up my dosage.  A few weeks later they threw in the vicodin, and added a 2nd nerve pill.  After my trigger shot, they added in a muscle relaxer to help to continue breaking up the muscular knots and prevent it from happening again.  I don't take the pain/muscle relaxers as much as I've been prescribed to, or I wouldn't function.  But one pain med twice a day and the muscle relaxer at bedtime seems to be working well.  

I'm not 100%, but I'm functioning much better than I was 4 months ago before I saw them.

Nettie1964

So, do they say the pain is from treatment, because I didn't have a mastectomy, only lumpectomy? But my pain is either more cancer or from what the chemo did to me.

GoWithTheFlow

Nettie, I'm not sure.  I know that my radiation oncologist said some of it can be from radiation.  I've always felt it was from that area being "beat up" so bad.  I found my lump because I had pain in that area, it got better when I started chemo as it shrunk.  Then the surgeon put a clip to mark the nodes and it got worse, and never really went away even after surgery.  I would think any type of surgery in this area could trigger muscle knots.   See if you can find a pain clinic near you that specializes in post cancer pain and post surgery pain.  I found the one I go to seems to see this pretty regularly and it made me feel like there is hope.