Pain experience

[dfourer]

A cautionary tale.

I had an issue with pain that I want to share. I have stage-4 NSCLC going on 6 years. During that time I used small amounts of hydrocodone or morphine when I had pain. (history- http://www.lungevity.org/l_community/vi ... hp?t=37828 )

Recently I had severe pain from a lung tumor pressing on a large nerve in my shoulder, effecting my hand and arm. I no longer had any response to normal doses of pain medicine. I apparently developed tolerance to this class of pain medicine. I could not sleep or eat. I was hospitalized with severe pain and was sent home with morphine 180mg per day. That is a lot of morphine!

A few days later I went to the emergency room complaining of breathing difficulty. After a few hours I declined to be hospitalized and went home, feeling better. Over the next two weeks I often complained of difficulty breathing. I told my oncologist and the nurses, but they could not explain it. I soon could not go far from my house, for fear of getting out of breath. I felt panic about getting out of breath, when walking or sleeping at night. I thought I was gravely ill.

I noticed that the pain was gone and I was accidentally late on doses of morphine. This led to the discovery that skipping a dose alleviated the breathing problem. I was also noticing effects of morphine on various muscles. I concluded that morphine was inhibiting my diaphragm muscles and inhibiting breathing. I began reducing morphine.

I planned to reduce morphine slowly, but it was easier to breath if I took less and less. During this time I took walks outdoors, climbed stairs without panic, and generally felt better. In 3-4 days I went completely off morphine. Pain was only mild.

That led to some physical changes, good at first, and then bad. Withdrawal from morphine lasted 5-6 days. I felt lousy and generally exhausted. The pain has returned slowly but not bad. I don't take any pain meds now. I have an option of nerve-block treatment if the pain becomes severe again. I managed to stay on my chemo schedule through all this. I am building my strength, getting lots of exercise.

[recce101]

Hi, David, it's good to hear from you. I've heard a couple of other stories like yours. These powerful pain meds are certainly not a panacea — many people don't handle them as intelligently as you have and end up being harmed as much as helped by some of these drugs.

From the link I see you're back on carbo+gem, the same combo you were given back in 2004, and it seems to be working once again (stable is good!). Maybe alimta will again be effective somewhere down the road. Take care and keep us updated. Aloha,

Ned

[dfourer]

Good to hear from you too, Nick. I understand you are in Hawaii. It's really cold here in Chicago now. Single digits tonight, and windy. I hope you are enjoying life. I live for the days when I feel well and comfortable. Friends have shared those good days with me and given me more enjoyment. Take care. --David

[jaminkw]

David, good to see you onsite. I've been following this story on the phone and in your emails but am glad to hear things are continuing to move in a positive direction. I'm also glad you have a backup for the morphine should the pain accellerate. I do understand that too much morhphine can kill.

Take care.

Judy in Key West

[jstdzy]

David,

Thank you for posting your experience. It is a reminder to all of us to be proactive with our health.

Dana