Questions submitted by readers and answered by the CLL Society Medical Advisory Board
By Ed Ratner, MD
I just turned 47 and was officially diagnosed with CLL/SLL a little over a year ago, though my doctors estimate I have had this for at least eight years or so. I have been on opioids for at least seven years due to a back injury (worked related) which included failed therapies and back surgery. A pain specialist prescribed Oxy 10mg and a Fentanyl patch 75mcgrm, though later I asked to stop the Fentanyl patch due to everything being discussed about this medication. Due to this injury, I am on disability and could no longer afford seeing the pain specialist for treatment other than for shots, so my Primary Care Physician agreed to continue to write pain scripts for me.
When diagnosed with the CLL/SLL, I informed oncologist about all the pain I’ve been experiencing for a year or so especially in my legs, armpits, and joints, as well as the fatigue. The oncologist sent me to a palliative care doctor who increased my Oxy to 40mg ER three times daily, and 30mg every four hours. As the pain continued, I was then changed to Hydromorphone 4mg every four hours and kept the Oxy ER as initially prescribed. As these meds were not helping a lot, this doctor then prescribed Methadone 10mg three times a day, and 5mg every six hours.
This is doing nothing. Although I have explained the best relief achieved was when using the Oxy 30mgb, 1-1/2 pills every four hours, the doctor indicated he does not think opioids will help me if the methadone doesn’t work.
I have no life at all with the methadone. I am not at all comfortable taking the methadone and as it causes heart issues, I have an EKG every month which is worrisome. I am also not someone who thinks meds should give me no pain. I can live with a 5 or 6 and have a little bit of life, but not a 10.
How do I get the doctor to listen to me? I want to go back to the Oxy instead of the methadone. How do I approach him? I don’t want him to take me off the opioids.
Answer from Dr. Ratner: Chronic pain is a tremendous physical and emotional burden. Adding a diagnosis of CLL/SLL adds challenges, even if it is stable or low risk. The uncertainties associated with the CLL/SLL diagnosis compound the day-to-day difficulties associated with the pain. In addition, there can be worry whether any worsening of pain or fatigue is due to pre‑existing back issues, side-effects of medications, or progression of the CLL/SLL. There is no solution to these problems, but palliative care models provide hope for better coping and quality of life.
Suggestions (which are not intended as professional medical advice) include:
- Seek a CLL/SLL specialty team to monitor/manage/assist with the CLL/SLL. The CLL Society Web site has lists of such programs that have more experience with CLL than most community oncology practices. (https://cllsociety.org/toolbox/cll-doctors/) If you cannot travel or your insurance doesn’t cover one, the CLL Society may help arrange and pay for a one-time consultation, to review your labs and explain prognosis and options. (see: https://cllsociety.org/cll-society-expert-access/)
- Opioids for chronic non-cancer pain are very complicated. Physicians’ attitudes towards their use have changed over time, but opioid use is now recommended only sparingly. High doses rarely have enough benefit to outweigh risks. A pain specialty clinic may offer approaches a primary clinic cannot, especially related to non-drug options for control of pain (e.g. acupuncture) and mental health services to learn coping strategies. Another option for assistance in improving function and pain control it to seek a consultation with a Physical Medicine and Rehabilitation specialist (Physiatrist).
- Explore discounted and free care options that can provide access to pain specialists or mental health services. Some hospitals and associated clinics
Dr. Ratner is an internist who specializing in geriatrics and hospice/palliative care. He currently serves as Associate Director of the Geriatrics Education Research Clinical Center (GRECC) at the Minneapolis VA Medical Center and as an Associate Professor at the University of Minnesota Medical School. He is also a member of the CLL Society’s Hospice and End of Life Committee.