Cancer Patient Advocate Discusses Opioid Crisis and Cancer Pain Management

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Andrew Schorr:

And hello.  Greetings.  Welcome to Patient Power.  I'm Andrew Schorr today in La Jolla, California, at the University of California San Diego Moores Cancer Center, and I'm in one of their meeting rooms here.  And I want to have a conversation with a leading patient advocate who happens to be a myeloma patient, I'm a leukemia patient, and talk about some issues that are important to all people affected by cancer.  So let's have her join us, and there she is.  Cherie Rineker.  Hi, Cherie, how are you done doing? 

Cherie Rineker:

Hi, Andrew.  How are you doing?  I'm doing absolutely great here in Lake Jackson, Texas, on a very nice, non-rainy day finally.  Thank you. 

Andrew Schorr:

Thank you.  And people know you with your wonderful sunglasses.  You look like a movie star.  But let's face it, you've been through a lot as someone with one of the blood cancers, myeloma, and even I think a year ago participated again in the CAR-T cell clinical trial for myeloma.  How are you doing? 

Cherie Rineker:

Today, other than a slow recovery from a bronchitis I'm actually doing amazingly well compared to the last six years.  Last year at this time I was near death.  We weren't sure if the CAR-T was going to save me, and I ended up being one of the lucky people who ended up being MRD negative, and it's been uphill climb since.  It's been amazing, and I get to live what feels like a cancer-free and chemo-free life. 

Andrew Schorr:

Well, of course, there's high interest, and that's great news, high interest in can this sort of immunotherapy approach work for a broader number of cancers, and we're so glad that it's been working for you because you'd cycled through a lot of treatments and quite frankly were near death, right? 

Cherie Rineker:

Yes.  I was near death several times all the way down from when I was diagnosed with late-stage myeloma and then must have about eight relapses and 13 different lines of treatment before getting to the CAR-T.  And, yeah, it was touch and go several times. 

Andrew Schorr:

Well, Cherie thank you for joining me for this conversation, a new approach we're trying here on Facebook Live now the technology allows for it.  You have a blog that's on our website, patientpower.info, and you've written about it.  You've talked to me about it, about the opioid crisis which definitely is a crises in the US and terrible deaths from people getting addicted and then overdosing, etcetera.  It's been tragic.  But yet you were concerned that what got lost in the discussion was the need for pain management for cancer patients.  So tell me a little bit about that concern. 

Was it the fear that a patient who was suffering from pain, like multiple myeloma could be an example, bone pain or other people have had metastases that they just couldn't get the medicines they needed? 

Cherie Rineker:

Yes, yes.  It started from before I was diagnosed and the horrific pain that I had from the lesions on my spine and the broken ribs just from turning or stretching my arms up and going to doctors, and them just brushing me off because I was only 43, 44 years old at that time.  I looked too healthy.  I lived a very healthy lifestyle, and I realized opioid crisis was already an issue then and I really felt—you know, when you show up at a doctor's office with back pain I've heard that's a way for people to try—you know, you can't really pin down back pain, so it's a great way for people who want a drug to get the drug. 

And with me it was actually quite the opposite.  It wasn't until a month before my actual diagnosis that the doctor finally reluctantly gave me hydrocodone, which I would use as soon as I came home from school and then lay on the couch for two hours kind of feeling the pain going away and then I could pick up my daughter, cook, and then the pain was right back and I really had to be careful with that. 

And then once I was diagnosed with myeloma it was amazing how the attitude of the people in the office changed, how right away I got fentanyl (Duragesic), and it was like, how much do you want?  And as nice as that was, being taken seriously, while I wasn't being taken seriously, I felt like they looked at me as a criminal, as a hypochondriac.  They just didn't take me serious, and that's a real problem too. 

Andrew Schorr:

Right.  I would just say for those of you watching who certainly have a cancer diagnosis or where you're being worked up for that, there are doctors within the cancer practice, not at every clinic but certainly at many of the major clinic centers, who are palliative medicine specialists.  And it used to be palliative medicine was basically for people at end of life, but it's much broader than that now.  And so I would urge you to say, look I'm suffering.  If you can't help me maybe the medical oncologist.  Can I be referred to a palliative specialist to really get the pain management that I need?  Wouldn't you agree, Cherie? 

Cherie Rineker:

I would, but as I wrote in the article that you guys just put up on Patient Power, last year when I had a tumor the size of an orange growing on T-12 within two months and another big tumor that broke my sternum, I actually went from my oncologist to the palliative doctor who was a man who looked like he was in the great shape I used to be in, somewhere in his early 40s, and he was afraid.  He sent me home with some Lyrica and suggested physical therapy, which I'm a yoga instructor and I was a triathlete, so—but I was in a wheelchair.  When you're that bad to still be looked at even in a palliative—by a palliative doctor at a major cancer center, that was a huge big deal. 

Within three days or within a week I went back to him three times and last time in tears, and I was taken in to the hospital for 12 days just for pain management.  And then the reason I decided to write my article was because about a month ago I got bronchitis and we were afraid of pneumonia.  And the ER doctor I went to then, I've had RSV, you know, chronic lung, cough, lung condition like newborns get, a lot of coughing since my diagnosis, and the only thing that helps is a cough syrup with hydrocodone and acetaminophen (Vicodin). 

Andrew Schorr:

Oh, wow. 

Cherie Rineker:

That eases the cough for two, three minutes, and the doctor wouldn't give it to me.  He said it's probably viral.  He could tell, the tests showed that I had very low platelets still and that I was neutropenic, and he said it's just going to take you a long time to get over.  And I went home that day without any medication, went to bed, coughed.  I just hurt so bad from all the coughing, and the next day I called the ER and I said, can you please give this to me?  And he said, you know, I'm just not comfortable doing it.  You're going to have to go to the ER at MD Anderson, and he just flat out refused.  And I was very—I'm thin, and was a mess that day, and I was like, did he think, like what did I do wrong for him to think that I might be one of those people? 

Andrew Schorr:

Clearly...

Cherie Rineker:

It again showed me what a problem it is. 

Andrew Schorr:

...yeah, clearly.  I wish there were an easy answer.  The medical community is being hammered and dentists as well as MDs and other practitioners for overprescribing pain medicine, and does that contribute to overdoses and deaths.  And then we have people with severe cancer pain, bone lesions, metastases, things like that, so I think we're going to have continuing discussions about that. 

Cherie, I wanted to just discuss a couple of other things with you while I've got you, and we'll have other conversational programs like this one. 

Cherie Rineker:

Can I just before we move on say one quick thing? 

Andrew Schorr:

Sure. 

Cherie Rineker:

I do believe that people need to start taking some ownership themselves. 

Andrew Schorr:

Yes. 

Cherie Rineker:

We can't keep suing and blaming pharmaceutical companies, doctors and stuff.  We have to take ownership of our own bodies.  We're adults.  We got to do ourselves what we teach our children, you know, self-control and stuff.  So I would like the opioid crisis debate a little bit away from always scapegoating and blaming somebody to kind of looking at yourself and being honest, do I really need to take this every four hours?  Could I wean myself off?  And those are the things that I've done to stay from being addicted to anything. 

Andrew Schorr:

Clearly.  I think this is an ongoing discussion, and you're right.  It's the person taking the pills, and it's not like there's a quick fix for everything.  And there are different modalities too, and that's fair too, even—maybe physical therapy wasn't right for you, but it may help others. 

Cherie Rineker:

Sure. 

Andrew Schorr:

We'll talk more about that.  Couple of other things I wanted to discuss with you know.  One is about end of life.  So we're all going to die.  You live in Texas, which doesn't have certain laws, but some other states do, Colorado, Washington, California, I think, Oregon, that have sort of more liberal procedures where a patient can choose the way they want to die, and somebody may be suffering. 

Cherie Rineker:

Right. 

Andrew Schorr:

You've actually made trips to Colorado based on that knowing that you'd been near death a number of times, and whether it's CAR-T or something you don't know what's ahead, right? 

Cherie Rineker:

Right.  Yeah, you bring up a really good—I'm actually working at an article I wanted to burn it out to get the feedback because this is a very tricky subject, and it involves politics and religion and choice and everything, but just to let you know—this is going to probably come as a surprise to my followers right now—in a couple weeks I'm actually going to Colorado to meet up with two physicians—and just a quick back story. 

My father was a life insurance agent.  He became the CEO of the company, but he used to sell insurance door-to-door when I was in his late 20s, and he would sit down with young couples who just had babies and he said nobody wants to talk about death, but he would tell them, you know, think about how much you love your wife and your baby girl and stuff and wouldn't you want them to be taken care of in case something was to happen to you.  And he said let's have the conversation now.  You put all your affairs in order, and then hopefully you'll live another 60, 70 years old without anything ever happening. 

So for me having seen the devastating effects of end of life issues where there was incredible suffering that just simply couldn't be controlled, there's so many circumstances that come into play.  And I think it's a personal right issue.  I don't have a lot of family around here to take care of me.  I don't want to burden my daughter with watching her mom—I have a very strong body.  I just have cancer, and so being young I realized that for me would be a very drawn-out business, so I'm going to actually meet with two doctors in Colorado, and we're going to start the discussion. 

And this is not because I don't want to live.  This is not because I want to kill myself.  It couldn't be further from the truth.  But I want to have that insurance policy, all that stuff into place that if I were to relapse and if the pain was to become unbearable and nothing can be done to ease that and the end is imminent, I want to know that I have a place where I will be able and make sure and make sure that the end goes—is easier on me, my family, my loved ones.  So it is not a—there's no slippery slope involved.  I've read all the laws.  There's no way that people can get rid of aunts or uncles or husbands or wives that they really would rather not be dealing with anymore.  This is purely a patient-doctors relationship. 

For anybody who thinks that doctors should be there to help us, sometimes help is no longer available, and all that can be done is keeping us comfortable, and sometimes that's not possible either.  And to me if we love our animals and we see them suffer and we see that death is imminent we take them to the vet and we put them to sleep.  And for me I don't see the disconnect, why we couldn't do that for people that we really love too.  But I think this deserves more time on its own. 

Andrew Schorr:

It does.  It does. 

Cherie Rineker:

And I really need to write a good article about this. 

Andrew Schorr:

We'll talk more about it, and certainly in other countries there are policies about that.  And we're going to Scandinavia this summer, and I know there they have a different take on this, more likely to dispense this. 

Cherie Rineker:

I was born and raised in Holland, and one of my dear uncles passed away a couple years ago from prostate cancer that he fought for many years.  The last year was absolutely miserable.  He took my three cousins and his wife together, and he said I can't do this anymore.  I don't want you put you guys through anything more.  And the doctor came to the house.  And I spoke to my cousin about it, and he said it was the hardest yet most beautiful thing.  He wasn't put out by morphine for days on end.  They got to say their goodbyes, their tears, their hugs, their everything, and then he was gone in less than 15 minutes I think. 

And to me that is a beautiful, humane thing of helping somebody when death is imminent.  Not when you just want to bail out of life, but when the only option is either dying slow, possibly horrible death versus let's just put an end to the inevitable, and that's how I view it.