The Bear Hunt Can Wait – Kerry Found a Doctor

The Bear Hunt Can Wait – Kerry Found a Doctor

By Ed Coghlan

One of the privileges I’ve enjoyed since launching the National Pain Report is meeting a lot of interesting people—people who aren’t afraid to express themselves about their chronic pain, their treatments, their frustrations.

One of those is Kerry Smith, who wrote a column for us recently about his plans to go on a bear hunt in Alaska, which promised to be very difficult given the severity of his chronic pain. (Here’s that story). The former minister and artist lives in Tennessee and has been characteristically honest about his “journey”.

He promised he would write a column for us, when he returned, about the experience.

This past week he lit up my email box again. The bear hunt’s off. While he might be sad about that, he was happy to have found a doctor – a real doctor –  that Kerry thinks has the right approach to defining and treating his chronic pain.

Since many of you have similar frustrations (about doctors, not hunting bears), we thought the candor and humor and hope in Kerry’s email might be worth sharing:

I tried. I waited for the damned curve ball, watched it as it spun and started to fall, timed it just right, swung hard, and, and, missed. I just cannot do my bear hunt. I hope that it is temporary and that it will work out in the years ahead. But it ain’t happening this year. Not this year.

That was the bad news. The good news was that I have found a good pain management clinic that is going to help me. The doctor was just a jewel. Not nurse practitioner but doctor. He is running some blood tests on me. Looked at my file as thick as Audubon’s Elephant Book of Birds, and said this is what we are going to do; we are not seeing an oncologist right now. We are not doing a nerve block because it would not work. We are not doing more surgery. We are not increasing your opioid medication.

Rather, we are going to see what is at work here. He prescribed me Percocet in a cascading effect to wean me completely off of opioids and he prescribed me Marinol. Marinol is basically medical marijuana and is reserved for cancer patients who are in their later stages. He realized what is at work with me and prescribed it. Now get this, the insurance covered it to everyone’s surprise. The doctor and his nurse had told me that it would not be covered by insurance and to expect a fight and low and behold it didn’t happen! Woo freaking hoo!!!

So, one out of two I suppose. Disappointment with not setting my butt in Alaska? Why yeah!!!! The heeeeebeee geeeebbbbeees from decreasing my opioids, uh, dang straight. But to have someone who heard me Ed, who really really heard me, was like hitting a home run man.

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Authored by: Ed Coghlan

There are 8 comments for this article
  1. Sheryl Donnell at 2:25 pm

    I have to say, this is a bit worrisome. When the best we as chronic pain patients can really hope for these days is a doctor who listens to us, but then insists on taking us off opioid meds that we have been stable on for years, to try an untried medication just so we can “be off opioids “. For most of us, opioids are not harmful, they have given us back the ability to get out of bed and move. Only because the CDC’S has mixed in the overdoses of Heroin plus suicide by Heroin or opioid and said they are all accidental deaths (in their own literature) do we have an “epidemic ” of deaths . And those deaths have skyrocketed because addicts moved onto more dangerous Heroin laced with Chinese Fentynl when they could no longer get access to opioids and chronic pain patients are committing suicide because of increased pain. And everyone is drinking the Kool Aid. This story is not a win. It is a huge loss. He did not get help to go to Alaska. He is worse, he is losing the meds that were helping him somewhat, where in years past it would have been time for a slight increase, he’s going to a totally untested,off label use of a drug. This is a win? Not in my book

  2. Anne Fuqua at 3:25 pm

    First, I’d second everything that Dr. Ibsen said.

    Kerry, I’m very glad that found a doctor at all – but especially glad that you think he can truly help you. Part of me thinks that I should stop here, ending this comment and simply wishing you all the best. I’ve always enjoyed your columns, but don’t know your full story so please forgive me if what I say is irrelevant due to my not knowing your situation better.

    I’m hoping and praying that this doctor is on the right track and his plan is precisely what you need. Also I’m really glad that your insurance paid for the Marinol (dronabinol). It’s available as a generic, now but it’s still an expensive generic. Some insurance plan pay automatically, others require a prior authorization, or don’t provide coverage at all.

    It’s actually used fairly commonly, though with mixed results. It’s a Schedule III med though it was originally Schedule II like oxycodone, morphine, and most other opioid-based drugs. It was approved for nausea and wasting syndrome related to AIDS, but has been prescribed for many other uses since its approval (muscle spasticity – mainly from multiple sclerosis, but also cerebral palsy, spinal cord injury, and stroke among others; an adjunct to other treatments for neuropathic pain are the most common). Results have been mixed. Many people who get a good benefit from marijuana don’t benefit from dronabinol. Most people I’ve talked to who do benefit feel that it would have little utility as a stand-alone treatment (except for appetite issues) that they DO feel that it produces an added benefit when combined with opioids, ketamine, or anti-convulsants. I’ve taken it at times and I would agree that it does help when given along with other treatment (oddly the “real stuff” did NOT help me at all, go figure).

    Prior to my “current life”, I was a registered nurse. I worked on a locked psychiatric wars and as a hospice nurse. Granted, that was fifteen years ago near the peak of permissive prescribing of opioids. As you know, it’s a totally different world now, primarily for chronic pain patients. Though there are individual providers who deal with cancer patients that are growing weary of regulatory powers, the overall message is still to treat cancer-related pain aggressively and keep quality of life as the primary concern. Just to see if I was missing anything, I did a PubMed (search engine/database with journals from various health care disciplines i.e. medicine, nursing, etc) search to see if dronabinol was gaining in popularity popularity as a pain treatment for advanced cancer. I don’t doubt a bit that there are doctors trying this rather than increasing the opioid dose – even for a cancer patient thanks to the overarching fear of addiction that pervades medicine these days. I can even see a doctor trying this if he felt that a patient was truly not getting any benefit from the opioid (I think most would try ketamine first though as it is known to decrease tolerance and evidence suggests that it reverses opioid-induced hyperalgesia). From the search I did, there are a few groups studying CBD and some of the newer pharmaceutical THC preparations including Sativex (nabiximols) are being studied for use with patients who aren’t benefiting from opioids. Only eight studies came up, though there would probably be others if the wording were varied more just like with a Google search. None of these studied dronabinol which contains one element of the cannabis plant: THC-9 (tetrahydrocannabinol-9), but lacks the other components including CBD (cannabidiol).

    I really DO hate to see you miss this once in a lifetime trip. I wish that he could have “propped you up enough with meds” that you’d at least be able to make this trip – even if you knew that you would have to taper some/most of them on your return home. Again I’m hoping and praying that this doctor, who knows your history unlike me playing armchair quarterback (or armchair nurse:), sees something that shows him that this is truly the best route for you. From what you describe, he seems to be genuinely concerned and wants to help. That alone is huge. Again, as I said I really went back and forth as to whether I should say what I have said. I don’t want to rain on your parade or cause you to think that this will not work before you even try it. You seem like the type of patient who does their own research and wants to know as much as possible before you make decisions.

    This is the link to the PubMed search I did:
    http://www.ncbi.nlm.nih.gov/pubmed/?term=Dronabinol+pain+advanced+cancer.

  3. Michael at 9:57 am

    Hello fellow CHRONIC PAIN brothers and sisters. Given the environment that we are all in. UNWILLINGLY. I would like to start with a Happy Mother’s day to all the moms, and a hope that EVERYONE has the best day possible, with regards to our individual situations! ! I have been reading all of your comments for several weeks now and will be putting in my 2 cents worth, soon. I’m a 56 yo. retired Firefighter /Paramedic with 30 years service to the citizens of Lansing Mi. 28 of those years, in chronic pain. Not surgically viable. I will share much, much more with the hopes of giving and getting information and support. I will start with a little teaser. I have been on opiates for many years. The one that was presented to our doctors as “Non addictive – or habit forming ” ( around 15 years ago ) sound familiar to anyone? I will leave you with that for now. Stay tuned. Stay alive!

  4. Brooke at 8:30 am

    So happy to hear you found a good doctor! I hope the taper goes well. Not having to worry about opioids would be ideal. Hope it works out for you. I wish I could do that. Thank God I am on a children’s dose and really only need it with pancreatic flares. I feel terrible for the people out there on large amounts who live in fear of coming off them or of doctors cutting them off or dumping them as patients. It’s cruel and inhumane.

  5. Mark Ibsen MD at 6:34 am

    This may seem like a good outcome, yet:
    If Kerry found a doctor like Dr Forrest Tennant,
    He could go on that trip, have his life back,
    Get a palliative approach to having his needs met, and
    Either use opiates( the second safest bet for pain)
    Or
    Medical mj itself
    Then perhaps a great outcome will ensue.
    I will follow the case with great interest.
    Best wishes Kerry.
    Here hoping and praying your doctor will attend to your pain and function.
    A sign you are winning will be completion of your dream trip.

  6. Tim Mason at 6:33 am

    Great News Ed!. As I mentioned before I worked in Pharma for 25+ years as a medicinal natural product chemist. I developed analytical methods for assay of new plants and plant extracts and alkaloids. I never worked on any cannabis but I am certain their benefit is immense. The drug pipeline can be daunting with synthesized active pharmaceutical ingredients (API). With natural extracts and purified plant actives that pipeline gets a lot shorter and much of the FDA red tape is gone. Many, if not all, of these natural remedies have been used for hundreds of years with no adverse events. With synthetic drugs, some of the degradation products that form in the solid dose formulations and elixirs can be powerful nerve agents which can do irreparable damage to the nervous system.
    One of the best cancer drugs to come out was a purified extract recovered from the bark of the Yew tree called taxanes.
    I am so confident that canabanols will be the hottest thing going in the treatment of pain that I would consider buying stock in a company that compounded the formulations.
    I see more than a “home run” here, I see a home run and three runs batted in.
    Peanuts!, Popcorn!, Canabidol!

  7. Maureen at 5:37 am

    Dear Ed…thank you for posting about Kerry.
    Kerry, ‘all things happen for a reason’ 🙂 While I was hopeful for your bear hunt…I truly imagined just how would you do it and said a prayer for you. I imagined myself trying to do it.
    My kids live across the country from me and I’m unable to travel to see them. It breaks my heart.
    As far a finding a new and better doctor…I could cry for you.
    I have posted several times about my horrors with doctors since I moved 1 1/2 years ago…only to finally find one who at least listens, just 3 months ago, and this month she told me she is leaving the area. I cannot even describe what I’m now dealing with emotionally with trying to find yet another doctor ASAP, and the fears and concerns that have come flooding back etc.
    Sorry, this is about you, not me, I got sidetracked! I’m ecstatic for you, to say the least! And I wish you the best of communications and better pain management. Simply finding a doctor who listens and is ‘interested’ in HELPING you is like finding a ton of gold these days! I must admit…I’m jealous.
    God bless you and I wish you ‘feel much much better’ days ahead!! Maureen

  8. Kristine at 3:28 am

    How is the Marino working for you?
    It would be very scarry to get off opioids and put all my faith in a new medication.
    Maybe soon you can go on your Bear hunt. I hope you’re finding relief.
    Gentle hugs