Diagnosed in June 2002, EPP by Dr Sugarbaker of Boston same year. No tumor left but, nerve damage from surgery has left me with constant pain. Do any of you other people fight this same problem. I have tried opiates, surgery, nerve blocks, injections to try & kill the nerve chemically. etc., etc. Pain varies with whatever degree of activity I perform. Laying down equals dull ache, driving causes that to increase and so on. Tired of living like this. Any suggestions from anyone with same problem that has found a solution. Thanks for your help. Timothy Crisler

Timothy, there are many who deal with chronic pain. My first question is, have you called Mary H.? She can offer some suggestions on where to go. Is Dr. Sugarbaker willing to deal with this in any way? Have you seen a pain management specialist? This years symposium will offer a session devoted to pain management. If you can not attend, the symposium is being live streamed this year. I'm very anxious to learn what's offered in that session. My daughter has 6 years of chronic pain. It was there before her meso was correctly diagnosed & remains through treatment & 6 years of NED. Trial & error has found a combination of meds that give her relief & allow her to function normally. Some days more meds are required than others. Like you her comfort often hinges on her level of activity. I totally agree with Dr. Taub who once voiced to us the wish that intensive research be done for the why of such pain for meso patients! Don't give up! Keep asking questions & searching for treatment!

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Janet, Mom/caregiver of peritoneal survivor dx 12/05

Janet, thanks for your reply. I think I have found a pain specialist whom has actually had a meso patient before. Do you know if anyone has ever had meso surgery without chronic pain?

Hi Timothy,
I had an EPP with Dr. S in May of 05. Had heated chemo, then 3 mos of chemo and 30 days of radiation.
During the second round of chemo I started having pain just below the right rib cage--deep inside. (left lung had been removed.) No one knew what to do about it or what it was. The pain grew, and was at first just uncomfortable when I was standing or walking, but then grew to the point that it became debilitating. I tried various narcotics including Morphine, Oxycodone, and have been on various Fentanyl patches (up to 50 mcg/hr) plus Dilaudid for breakthrough, but it just masks the pain. When it's strong enough to kill the pain, it makes me foggy, which I can't stand. It goes away when I lie down, thankfully. But I can't stand for more than 10 or 15 minutes. Then I need to sit down and "recharge" before standing or walking again. I've been to pain specialists, had trigger point injections, nerve blocks, acupuncture, etc., but nothing has worked. My pain is much as if a heavy weight were attached to my gut, and is just pulling down, down, down. Stomach muscles are very weak because doing anything that uses them increases the pain greatly and makes it last longer and longer. Doctors have suggested that the only other option is to implant a pain pump, but I've heard nothing but horror stories about them. I'm afraid this isn't much help...unless it's true that misery loves company!
Dave C

Hi Dave
Serve debilitating pain was a constant problem for my husband, Hermann. At one time he was on 300 mg Fentanyl Patches plus 15 mg Oxycodone pills every 3-4 hour, AND THE PAIN WAS STILL THERE. The constant pain was so debilitating to the point that he couldn't think of anything else, and that was a depressing effect on his quality of life.

 He was fortunate that there was a good pain management or palliative team that worked with him constantly to find something else that finally would helped. He had an implanted pain pump – the actual terminology is “Intrathecal Drug Delivery”.  Once the pain management team found the right dosage for him, there was much relief from the constant pain. He still had meds for break-thru pain, but on a daily bases, the level of pain was so much improvement.

I would think that in the 4 years since Hermann had received his pain pump there would have been improvements in this whole system. Don't know if this is information will help, but it worked wonders for Hermann. Best of luck to you.

Warmest hugs

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Irene
widow of Hermann
dx 07/07
sarcomatoid pleural meso
dod 03/08