Cancer offers a number of opportunities to be in pain, not only during treatments such as surgery, chemotherapy and radiation, but also from late effects such as peripheral neuropathy.
Peripheral neuropathy is when you lose the feeling in hands and feet and that feeling is often replaced by pain. The mechanisms of what causes peripheral neuropathy aren't fully understood, but what is known is that certain chemotherapy drugs affect the nerve endings, causing pain.
I began to experience peripheral neuropathy as a late effect a number of years after my chemotherapy. The mystery for me is that the drugs I had aren't known to cause this problem, but for me, they did.
My peripheral neuropathy began in 1998 with swelling in both my feet and pain in my hands and feet. I had never heard of peripheral neuropathy at that time, and there were no pain specialists in Dallas for me to consult with. Luckily, I was traveling and speaking at the time, and had physician friends in the Northeast, one of whom was a pain specialist. She recommended methadone for my peripheral neuropathy, a drug that worked well for me on nerve pain. For me, it was the perfect solution. The only problem was getting a prescription in Dallas, where it wasn't used for neuropathy the time. It was seen more as a drug affiliated with addiction than nerve pain.
I had to jump through the hoops required by the insurance company to get the drug. I also had to face the stigma of the drug. But methadone worked well for me and has continued to do so in the 12 years I have taken it. My pain is managed with a low dose of the drug that has not increased since I began taking it. One of the major myths of pain control is that you'll eventually have to increase the dosage to continue to treat the pain. I debunked this myth.
I have explored other options over the years, as pain control has become more a part of the cancer journey. But so far, there has been no option as effective for me as methadone. But I keep looking.
For other patients who take opiates for cancer-related pain growing misuse of the drugs is becoming a problem. The answer to this is finding a good pain doctor who can monitor your pain and be sure that you are provided with the best pain control available. As with many issues connected with cancer, it also requires we advocate for ourselves.