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Support > Patient-to-Patient > Patient Experiences & Guidance

Kim:  I waited way too long with my pain before seeking the appropriate help.

I just wanted to post a general note on pain management.

I was surprised at my recurrence this time because it involved a LOT of pain. For anyone else that has had this complication from metastasized lymphoma - a few helpful hints.

1. Get HELP. I finally went to the ER which I should have done sooner. They were able to pinpoint the reason for the pain and admit me for pain management. This was a huge step forward in starting to get better.

2. Don't be afraid of the opiates and pain medications now available for chronic cancer pain. After coming home, I was frightened by the amount and types of pain medication I was prescribed and decided to try and wean myself off of the pain medication. This delayed my recovery from my first round of R-CHOP and really made me miserable. I'm currently using 200 mcg/hr. of Fentanyl patches (Duragesic) and then Oxy IR (10 mg) for breakthrough pain 2-3 times per day. This regimen has really improved my quality of life and is easily tolerated.

I'm actually functioning well cognitively and feel OK. Pain level is around 1-2 most of the time which is a HUGE, HUGE improvement.

3. Know that pain from tumors is temporary and that each cycle, the chemo will "kick butt" and pain should be reduced, thereby reducing your need for some of the pain patches / meds. I haven't gotten to see this yet - BUT everyone keeps reassuring me and I believe them. I'll post an update in a couple of weeks.

4. Take care of you. Pain is debilitating and can affect all areas of your life. If you are living for the next advil, vicodin, skelaxin, whatever, then pain is controlling your life. If you can't sit still and need to keep changing positions, pain is affecting your life. If you wake up in pain throughout the night, see your doctor.

In retrospect, I waited way too long with my pain before seeking the appropriate help.

Cancer patients do NOT need to be in pain. There are medicines that are effective and work. They are not addicting for people who need that level of pain relief.

In time, I look forward to no longer needing the pain meds and being able to drive and a return to normalcy in that area of my life.

Right now, I'm SO thankful to the drs. / nurses and everyone else on my healthcare team for getting me to feel better. I'm walking, talking and living now and I'm not in pain. It feels wonderful!

Have a wonderful, pain free evening!

Kim

Diagnosed in 1999. Follicular Stage 2, Grade 2. Radiation x 20 neck and scalp. Recurrence 2001. Stage 4, B symptoms and Bone Marrow Involvement 20%. Rituxan x 24. Recurrence 2005. Stage IV, B Symptoms. Rituxan x 8. Recurrence Sept 12, 2006. Histologic transformation, Diffuse Large B Cell Sept 2006. Extensive Bone metatstates and large nodal tumors. R CHOP for 6 or 8 cycles. One DONE! 

 
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