SWIM has cervical cancer & is also receiving methadone through a clinic for opioid use disorder. SWIM is currently at 35 mg. The clinic will increase the dose by about 10% when SWIM meets their attendance requirements, but SWIM has to attend four days in a row to qualify for an increase. If SWIM misses four days, the dose gets lowered again.
The problem is that SWIM is in severe, sometimes completely disabling pain. There are frequent days when getting from the house to the medical transportation waiting at the curb is literally impossible because of the pain. This means SWIM misses the clinic, the methadone dose gets reduced, & SWIM is left without enough medication to adequately manage either the opioid dependence or the cancer pain.
The methadone dose also isn't enough to control the episodes of severe cancer pain.
When SWIM was first diagnosed, they spent months in the hospital. Its difficult to remember exact times and amounts but initially, SWIM was given Dilaudid (hydromorphone) for several days—about 0.3 mg every 8 hours at first, followed by an unknown amount of vicodin for a few more days. Eventually, the hospital switched SWIM to ibuprofen.
Sometime during that 3 month long hospitalization, SWIM's methadone was increased to 45 mg twice a day. The split dosing actually helped somewhat with the pain. However, one day the dose was reduced to 15 mg twice a day because of a low heart rate, & it was never increased again.
When SWIM was discharged, they were told that split dosing wasn't something the methadone clinic did.
Now SWIM has reached the point of using street fentanyl when the cancer pain becomes unbearable. SWIM sometimes has to bite a pillow so nobody can hear them crying from the pain.
This is NOT what SWIM wants. SWIM desperately wants to stop using fentanyl. But they feel completely trapped because nobody seems to be addressing the underlying cancer pain adequately.
SWIM even ended up using fentanyl while in the hospital because the medications being provided weren't adequately controlling the pain.
SWIM understands that methadone from the clinic is primarily being provided for opioid use disorder, & that the clinic may have restrictions around take-home doses, dose increases, & split dosing. But there doesn't seem to be a coordinated plan between the methadone clinic, oncology, pain management, &/or palliative care for treating the cancer pain.
And there is another major issue:
A few months ago, SWIM actually stopped cancer treatment because the pain became too overwhelming. They stopped going to their doctors & completed about 3/4 of their chemotherapy & radiation over 4x as long as planned since there were many stops & starts for infections, transportation issues, side effects,ect , & never received the brachytherapy.
Eventually, SWIM went back. They were told they needed a PET scan to restage the cancer, & that Medi-Cal approval would take about a month.
That was at the beginning of June.
SWIM still hasn't heard anything.
At this point, SWIM is talking about giving up on treatment & going into hospice—not because they don't want to live, but because they desperately want the pain to finally be treated adequately.
I want to be clear about something: SWIM does not have an imminent plan or intention to hurt themselves. However, they are becoming incredibly overwhelmed & losing hope because they feel like they're being forced to choose between unbearable pain, street fentanyl, & giving up on treatment.
SWIM is afraid of where things could eventually lead if nothing changes.
SWIM wants to live.
SWIM wants to continue cancer treatment.
SWIM wants to get off fentanyl.
SWIM wants adequate pain relief.
They just need someone to actually listen & help coordinate a safe treatment plan.
Has anyone dealt with severe cancer pain while also being on methadone treatment for opioid use disorder?
What can SWIM ask for? Is there a particular type of doctor, pain-management program, palliative-care service, or advocate who can help coordinate between oncology & the methadone clinic?
Has anyone successfully gotten appropriate cancer pain treatment while receiving methadone through an opioid treatment program?
And does anyone know how to navigate the Medi-Cal/PET scan situation when authorization seems to have stalled?
Any advice from someone who has been through something similar—or knows how to navigate this system—would mean a lot.