I've stayed out of the Starchild Abraham Cherrix case, where a 16-year-old boy and his parents are trying to refuse known, effective, and life-saving chemotherapy for a curable cancer in lieu of a scientifically unproven alternative regimen that includes coffee enemas.
Orac of Respectful Insolence has been most prolific in commenting on the issues at hand and yesterday, The Cheerful Oncologist, weighed in. I'm happy about this because both fellas are MDs with highly-specialized oncology training in surgical and medical oncology, respectively. Hence, I defer to them on issues of life and death in cancer.
I'm a PhD cancer researcher not affiliated with any pharmaceutical company and whose income and laboratory support comes from the US National Cancer Institute and a non-profit academic research entity. If I think about it more, my livelihood comes from my American readers who pay federal income tax.
So, what could I have added to this discussion that hasn't already been said?
In my readings of the print media and blogosphere, I have one concern that may not have been addressed adequately: empathetic and effective, fact-based communication with the Cherrix family that respects their belief systems and acknowledges the risks of chemotherapy together with its benefits.
I've come to this thought because chemotherapy is sometimes misrepresented horribly to and by the general public and, despite the clear damage it causes to normal tissues, is the single most effective adjunct to surgery and radiation in creating cancer cures.
I thought about this both because of work in my lab and because of the comments of a pediatric medical oncologist at Columbia University interviewed recently by ABC News:
"Some doctors alienate patients in their beliefs, say there is no data, no science and dismiss it [alternative medicine.]"
It is very important for doctors to acknowledge a patient's belief system, and she says, "see if some kind of compromise could be worked out so alternative beliefs can be supported."
In the end, many experts say, it isn't age or authority that matters, but the ability of doctors and patients to come together and battle cancer as a team.
According to Kelly, "there is nothing that has been proven more successful than chemotherapy," but alternative medicine can be used to support a patient. [my emphasis added]
She says, "If people believe it helps them, maybe it will help conventional therapies to work better."
I had the pleasure of recently speaking personally with this oncologist. She is of the mind that the conventional oncology medical community must develop better mechanisms to communicate with patients. True believers in pursuing alternative medicine as their sole source of cancer therapy cannot really be convinced otherwise - it would be like trying to talk the new pope out of being Roman Catholic - and perhaps the Cherrix family couldn't be convinced otherwise.
But the rest of this post is for those in the oncology community who deal with the largest population: the fence-sitters between chemo and the seeming promise of vendors of alternative therapies.
I'm interested in this whole topic because I'm working hard on the side with some psychology and oncology colleagues to better educate patients about the truths
surrounding cancer chemotherapy. Not sugar-coating it, not selling it, not discouraging it (or any alternative therapy, for that matter), but just providing the facts that might resonate with an alternative-minded family who is scared shitless about their kid.
What would I have said to the Cherrix family if I was called in by their original oncologist to have a little chat?
1. Yes, cancer is a bitch. But did you know that cancer is really just our own cells gone awry? It's not like a bacterial infection. So, that's why it's really hard to just kill the cancer cells and not normal cells. We're working harder to find drugs that are more specific for the cancer, but there is nothing more scientifically proven to help your son than the stuff my colleagues are hoping to give him.
2. I know that it scares the hell out of you to see all of these sick kids around here who just got chemo. You're seeing them here at their sickest, really just a snapshot of their journey through cancer. Yeah, it's tough but its the best thing we have for treating a lot of cancers.
3. Have you ever tried to kill weeds in your lawn? Sometimes when you spray that stuff on the weeds, you kill a little of the surrounding grass. But in the long run, you end up with a really nice healthy lawn. You're seeing these other kids right after the lawn got sprayed. Let me hook you up with some families whose kids are now the same as those healthy, thick green lawns.
4. Oh, you want to try something more natural? Let's talk about that. Did you know that people like me have spent 20 years searching nature for the best drugs to kill cancer? In fact, my professors have been doing it for almost 50 years - your own government still works really hard to make sure people like me can look for these natural remedies.
5. What's that?.. oh, yeah, sure, I study herbs - there are some really promising things out there - I can't wait to get some of my discoveries into animals that have human cancers and, ultimately, into real people. Sadly the road is long from lab to drug and none of this helps you today, does it?
6. But, I've got some really good news that might make you folks happy, give your son the best chance for beating this disease, and satisfy your need to give something natural to your son. Three of the four drugs these oncologists want to use actually come from nature. How cool is that!?! Oh yeah, one comes from a plant that grows in Madagascar, another was a traditional medicine of the Penobscot Indians from Maine, and this other one comes from a sea sponge found in the Pacific. How 'bout we talk about that? Let's look at some pictures of the plants - we've got some growing outside the cancer center in our gardens. And later on, come back to my office where I have a saltwater aquarium with some of these life-giving sponges and creatures. Oh yeah, absolutely, I'm really fortunate to do this kind of research.
7. Now, don't get me wrong, natural doesn't always mean 100% safe. These natural remedies have been purified from the plants and sea critters to give us chemicals that are more powerful than they occur in nature. But that's what we have to do to give my doctor friends the good stuff to treat your son's cancer. Remember us talking about the weed killer stuff; this chemotherapy stuff is possibly and probably going to make your son feel bad, maybe really badly, for a short period of time. No one is going to deny that fact. But this is the best way we know how to save him - and I can tell you that thousands of people like me around the world have tested this stuff to make sure that you get the biggest bang for your buck: the best treatment of the cancer with the least hurt being put on the normal cells. But we have lots of other goodies to give him that we didn't even have 15 years ago, things like blood growth factors that will help him fight infection and feel less tired.
8. Yes, that's a picture of my daughter - thank God she got Mom's genes, huh? She'd look silly with the goatee, for sure. Well, if she had this diagnosis we'd be doing exactly what my colleagues are suggesting for your son. I'm an open-minded believer in things - really just a hippie born a decade too late, a real tree-huggin' kind of guy. But I believe in facts - and the fact is that 80% of kids with your son's cancer are cured completely with these drugs we're talking about.
9. Oh yeah, certainly, let's talk about some of these other herbal therapies, antioxidants, and such - but let's save those for after your son gets his treatment. Remember how I said that cancer cells are just like our normal cells? Well, a lot of these antioxidants and such will protect the cancer cells from chemotherapy just as well as they protect normal cells. Let's give the drugs time to work and kill the cancer, and my colleagues and I will do everything in our power to help your son recover as quickly as possible - we've got some great nutritionists and clinical pharmacists who can talk to you about foods and supplements.
10. We want to help you and we want to do it together.
Would that have helped?
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Thanks Abel-- great post-- linked to it on the lymphoma support boards. Anjou
Thanks for suggesting an uncommon approach, Abel. As I've watched this situation unfold I've been greatly frustrated. From what I've seen the Cherrix family has been treated mostly like wayward pets or pawns in someone's game.
Turning to the wider blogosphere audience: After we've all supplied our advice, our opinions, and our prescriptions, what if we also examined our individual values and our cultural values? Isn't there much more to this iceberg?
I agree with the others, really solid post.
But regarding your number 8: I seem to recall that he'd gone through a first round of chemo that was supposed to have an 80% cure rate, and it didn't cure him. Now he was being offered a different chemo with a significantly lower cure rate (50% or something, I'm not remembering exactly).
The things lacking in your post are an acknowledgment that he's tried one round, that it didn't work, that he's scared another will kill him, and a convincing argument to try the next round despite the odds and his fears.
Bardiac, my intention wasn't to be comprehensive re the entire episode but just to present a hypothetical if I spoke with the family at the beginning of the whole thing, before the first round of chemo.
My clinical colleagues can speak more to this point, but it is sadly not uncommon for one series of drugs to fail during the first cycle due to the unique biochemical and genetic properties of the cancer. (We give cancers a certain name but we now have evidence that there are many subsets of the same cancer, each of which might respond differently to chemotherapy).
Since we have so many time-tested regimens at our disposal, the suggestion for the second round of chemo most certainly involved another series of drugs that acted via different mechanisms.
In fact, for most cancers, there are 1st, 2nd, 3rd, and even 4th line therapies - then the recommendation would be made to visit some clinical trials for experimental agents that are currently among the most cutting-edge therapies in development.
Thanks for coming by.
He did try chemo once,.. actually he tried it for 3 months,.. Speaking as someone with this disease, here is what I have wondered,.. WHO TREATED HIM WITH ONLY 3 ROUNDS of ABVD with NO radiation the first time?!?!?! I have the exact same disease, the exact same stage,... and my treatment is considered abbreviated and I am still doing 4 ROUNDs (4 months) and radiation for 4 weeks,... All that I have read (And like most dx'ed with it,.. I have read till my eyes bled about Hodgkin's)This stage required more than 3 rounds in my opinion. Now I respect the 20+ years that doctors study to be able to treat somoene, and if it wasn't for doctor's I wouldn't have been able to read all that I have read about it. Yes, he was sick,... chemo sucks in ways tootsie pop never thought of, but IT WORKS,... its like his 3 rounds of chemo was like hitting a wasp with a fly swatter, it probably looked dead, but really wasn't, addition chemo with maybe some radiation would have been like the high heel show squishing the wasp into the ground.
Bardiac-- as a lymphoma survivor who frequents a hodgkins support board-- there are quite a few patients who've failed the first round of chemo, gone on to transplant and done well-- one remarkable case where a woman got pregnant and had a kid a few years after. Others I know, are kayaking, hiking, biking, adopting kids, after going through transplant because they failed the first chemo go round.... Yes, there are some that dont make it-- and its not a picnic to go through, but the ones I know who did are certainly glad they did!!! They are not dead, the other alternative.
I think Abel's post would apply for fears that one would face going through chemo a second time
And, ya these are testimonials..but can assure you, that there are way more of em than the ones who supposedly did well with the sham treatments presented on the news!! 50% is far better than 0%
Ahcuah, thanks, I'd love to know more about what exactly you liked about it and what could be improved upon.
etbnc, thanks for the praise coming from someone I know is devoted to the proper and accurate use of language - I just composed this off the top of my head in about 40 min from the many discussions I've had with students and the public. I'm sure that real psychologists, docs, nurses, PharmDs, and other cancer patient support folks could frame the main points more eloquently. And yes, a wider discussion is certainly in order.
I'm also a realist, though - the problem and challenge is that most oncologists practice in settings where they may not have the time to get through this discussion. I do know of some practices and academic places that have chemo education classes where such points and fears can be addressed, but some time must be preserved in the patient/family encounter to address individual chemo education and personal fears and apprehension.
anjou, I'm honored to have you come by and comment as a survivor - I can only speak about y'all because of PharmMom, so I deeply appreciate what you do on behalf of all survivors.
Again, my goal in this hypothetical encounter was not to minimize the limitations and side effects of cancer chemotherapy but, rather, to put them in proper perspective and in a manner that might have respected and/or resonated with the wishes and belief systems of the Cherrix family.
"chemo sucks in ways tootsie pop never thought of, but IT WORKS"
Tori, what a great quote. Sorry to miss your comment before as the CAPS caused it to get stuck in my comment spam filter.
You remind me of seeing 10-year GBM survivor and award-winning folk guitarist and songwriter, David M. Bailey, who spoke of playing a sales rep function for a pharma co that made one of the alkylating agents he received.
David Bailey's a deeply spiritual guy and really in touch with the experience of life, especially from growing up in civil war-torn Lebanon before his cancer, so he told the sales reps that they should each take the time to be infused with the drugs they were selling so that they could understand what they are talking about and empathize better with cancer pts. The response was sort of, "Giggle, giggle, oh sure, David, you cute little folkie"....and he said, "No, really!"
David sounds like one smart man. Sorry about the caps, I tend to be very passionate when I write (type).
My last paying job was doing patient follow-up at a major cancer center. Every year we had to contact former patients to see how they were doing. Some patients from the 1970's are now developing dementia, but still cancer-free. Some hate being reminded how that time in their lives, others are just grateful to have had these years. Many lost some hearing or have peripheral nerve damage from the chemo. Some were able to have kids, some not.
My mom was diagnosed with stage IV colon cancer, too late to do anything. Watching someone die from cancer is worse than any chemo.