Back in October, when one of the kinds of chemo Clio was taking caused her to have a seizure, I remember a conversation with our oncologist about what happened, and next steps. This is a guy who is one of the world’s foremost experts on childhood leukemia, who dedicates his professional life to researching better ways to treat and cure the disease.
We were standing by Clio’s bed in the ICU at Children’s Hospital while she slept, still under sedation, a breathing tube down her throat, hooked up to more machines and tubes and monitors than I could count. Our doc was telling me why the chemo had caused the seizure. and I expressed my fear and frustration about the whole treatment process: “I just hate that we have to put these poisons into her.”
He nodded, and said, with feeling, “I know. I wish we had better medicines. I wish we had better medicines.” (Yes, twice, for emphasis. And this is not an emotional guy.) “We’re working on it, but we’re just not there yet.”
The thing is, though, the awful medicines that kids are subjected to for treatment of cancer, thanks to the work of researchers like him, have dramatically increased survival rates over the past several decades. In the 1950s leukemia in children was basically incurable. In the 1970s, after concerted research and experimentation, the average 5-year survival rate got up to 50%. Today, for ALL (the most common form of childhood leukemia, and what Clio has) the average 5-year survival rate is over 90%. (And the <10% average fatality rate includes all fatalities with in 5 years, including those related to complications of chemotherapy.)
Now, hold that thought for a minute. Here’s another one:
Just shy of two months after Clio was diagnosed, I was able to escape for a few days with Elsa to our annual trip to a family camp in New Hampshire. (Usually our whole family goes for a week; last year Alastair and I tag-teamed.) They always have a masseuse on staff, and my in-laws treated me to an hour-long massage.The masseuse asked me about any sources of stress in my life and I told her about Clio.
Within five minutes, she asked me, “Are you open to hearing about any alternative treatments?” and told me about how a good friend of hers with some kind of cancer decided to forgo chemo because it was so toxic, and was looking into treatment at a clinic in Texas where a guy had some kind of experimental treatment with a track record of success. (With tumor cancers, mind you. Which are completely different from blood cancer.) She told me his name, and suggested I Google him if I was curious.
It was the worst massage of my life. I felt so judged, so angry, and so affronted that someone would suggest that I gamble with my child’s life with treatments that are unproven and unaccepted in the broader medical and scientific community instead of taking the 90+% odds of traditional treatment. Especially given that there was no indication whatsoever that that traditional treatment wasn’t working.
I wanted to ask her (but didn’t): Do you have children? Would you make that bet on your child’s life?
Here’s one more thought:
As I mentioned in my last post, Alastair was interviewed by Katie Couric for her web show “Katie’s Take” about his new album. I know I shouldn’t look at the comments on these things, but it was hard to resist. And the comments fell into two basic camps: 80% of them were wishing Clio well, saying what a great project, etc.
1% were idiots ranting about more or less completely irrelevant things. (One of my faves: “This little Girl has more sole and knowledge of the worth of life than any body incuuding the (S)(C)(U)(M) bag of Liberal Trash that is surounding the Marton Falily.” Brilliant. But I beg to differ: Clio has no sole. Only salmon, swordfish and tuna, and it’s always above market price. So annoying!)
But other 19% were people saying that hemp oil / cannabis / apricot seeds / an all natural diet etc. would cure Clio’s cancer AND/OR saying that the FDA / medical community / pharmaceutical industry / etc. was suppressing research into alternative cures, or results from studies proving that [insert miracle cure here] can cure cancer.
Why? Because it’s all one big conspiracy to make people rich at the expense of innocent people, including beautiful little girls like Clio. (Unless it was a commenter in the camp that she got leukemia because she’s had vaccinations or eaten non-organic foods or drank fluorinated water. But I guess that could be seen as part of the whole conspiracy, too.)
And I’m sure somehow it all relates back to Obama being a socialist. Or a bigger right wing fascist than Bush & Cheney. Or the entire US government being puppets to the UN shadow government. Or something.
As for the herbal (and other) miracle cures, I don’t doubt that naturally-derived substances have health benefits, and may even have a mitigating effect on cancer symptoms or even help fight — and perhaps in isolated cases even cure — cancers. I think alternative medicine is an excellent route to try for less serious ailments, alone or in combination with traditional medicine, and have used various herbs and extracts, as well as acupuncture, myself to helpful effect. (My primary care docs have always been all for it, too.)
But, sorry, I just don’t buy the conspiracy theories. Do I think our healthcare system is messed up? Yes. Do I think drugs are WAY more expensive than they should be? Yes. Do I think there are instances of corruption and collusion in the relationship between the medical community, the pharma industry and the government? Probably.
But I also believe that for the most part, people in all of these sectors want to cure diseases in better and less invasive ways. I know for a fact that both doctors and private companies are actively working on targeted and genetically customized therapies for cancers that will have many fewer side effects than chemo — and work better in the process.
And I know — because I’ve met them, talked with them, and done projects with them (you wouldn’t believe how carefully scrutinized every word in their marketing materials is, to avoid legal action and FDA fines) — that the people who work at pharmaceutical companies are not evil. Many of them are extremely idealistic, in fact. They want to do good for the world through science. (You know science? The stuff that brought you electricity, germ theory and the Internet?)
As for the greed-as-motivation thing, I don’t know this for a fact, but common sense tells me: If hemp oil or mango extract or whatever-the-hell could just as effectively cure cancer as chemo/radiation, with fewer side effects, and if this could be SCIENTIFICALLY proven (Remember? Science? Earth revolves around the sun and illness is not caused by evil spirits and all?), and approved by the FDA, those supposedly greedy pharma companies could make a crapload of money processing, producing, packaging and selling it.
And people like our world-renowned Dana Farber oncologist wouldn’t have to look into the eyes of a shaken mother whose child who has just landed in the ICU because of a grand mal seizure due to neurotoxicity of chemo and say: “I wish we had better medicines. I wish we had better medicines.”
If you want to treat your own cancer with alternative medications, more power to you. But do. not. talk to me about how my husband and I should treat our daughter’s. Chemo makes her feel awful and has frightening side effects and we hate it. We despise it. But we’ll take those 90+% odds, thanks.
We get this same exact thing whenever we talk about my son Alex’s ADHD and side effects from the ADHD drugs (totally different ballpark to talk about lifesaving meds, I know). Have you tried exercise? What about fish oil? ADHD is so overdiagnosed! It’s so hard not to tell people that until you’ve lived with a child with ADHD, you have NO IDEA how hard life is for them. I would love it if fresh air and exercise was all he needed.
Yes. So frustrating. And people tell me the same thing about my own — very serious — depression. How about exercise? How about yoga? How about therapy? Tried ’em all. They don’t do jack shit for (my) bipolar. You know what does? Pharmaceuticals.
Wow, people never cease to amaze. I am sorry you have to hear/read comments like this. It seems wildly inappropriate for people to comment on any one else’s treatment choices for any illness. And it’s hard to help but wonder what people who say things like that would actually do if ever faced with the same decision.
I bet they’d run to a hospital faster than you can say hemp. 🙂
FWIW, if that ‘clinic in Texas’ is the same one I’ve heard about, the guy running it is a terrible fraud and you would only have wasted your money, time and energy, as well as almost certainly not curing Clio.
Kudos to you for writing this.
Yes — Stanislaw Bruzynski. (Just googled “cancer treatment Texas fraud” and found it in 2 seconds.)
http://en.wikipedia.org/wiki/Burzynski_Clinic
Same one?
Same one. Heh – that’s some good googling.
Jane, you may not want to read these as they could be upsetting, but for anyone else reading, this blog chronicles the experiences of cancer sufferers at that clinic; how they are treated; and how they are charged – all awful. http://theotherburzynskipatientgroup.wordpress.com/
This blogger is a breast cancer surgeon who has written several times about the ‘clinic’ e.g.: http://scienceblogs.com/insolence/2013/03/26/stanislaw-burzynski-versus-regulations-protecting-human-research-subjects-revisited/
When I made the decision to go solo with my cotunrsction law practice, I knew I wanted to have flexibility to serve my client base of contractors and subcontractors in Virginia.a0 I started some flat rate billing and had the ability to take cases that were below the dollar value of those that my old firm was willing to take.a0 I also knew that I would be a master of my own destiny for better or worse (and it has been much more of the former than the latter).
Kudos. I think this is a great piece, more so because *in my mind* you ARE sortof a hippie-liberal-crunch mom who would under-non-life-threatening-circumstances likely always choose the road less traveled. I am obviously glad that I have never stood at this cross-roads with my own preshus darlings, but those who criticize a 90% success rate need their heads examined and their keyboards taken away.
Ha! I guess I’m sort of that. But probably not to the extent you think. Still, I like that I give that impression!
I know many very liberal people and many very conservative people and the two groups are basically the same. I am losing my mind at all the BS in my Facebook feed about how all of medicine is a conspiracy, vaccines are evil, all GMOs will kill you, and pot cures all cancers. Tin foil hats have gone mainstream. Well, either that or people are terrible interpreters of scientific data. (And usually, the people who forward all that “I f**king love science” stuff are the ones who still can’t figure out the difference between correlation and causation.) I am so sorry that you have to deal with that kind of “feedback” from people. Though, I am surprised that so many of them are online commenting since WiFi causes brain tumors…
You tell ’em!
Amen.
Yet another great column. However, I do feel compelled to comment on what I perceive to be an inaccuracy. My son is also treated at Dana Farber, and even at the beginning when the oncologist still categorized him as “standard risk,” they never promised a cure rate of over 90%. The best they said was 85-90%. And, overall, the general cure rate for leukemia is considered to be 80% (I think Dana Farber is a bit higher, though our oncologists do not seem to want to flaunt it). Then, if like my son, you are “upstaged” (our onc’s term, not mine), to “very high risk”, the cure rate falls to 75-80% (and that number comes from only one very recently completed, and very small, study–but I’ll take what I can get). I think it is important to make clear that this disease is far from figured out in order to prevent people from deciding to not donate to pediatric cancer research because that disease has already been cured enough.
Also, for the most part, the chemo drugs our kids are given haven’t changed in 30 years. I think there have been improvements in treating the side effects (Zofran is a miracle), but the basics have not changed and, according to a recent study, are known to cause long-term problems in 98% of people who underwent treatment (including radiation) as children. But, again, I’ll take what I can get.
The reason the core drug regimen hasn’t been improved upon in thirty years is that, given the relatively small number of children afflicted with cancer, it simple is not profitable for drug companies to pursue pediatric cancer treatments in the same manner huge dollars are dedicated to R&D of adult cancer treatments. Very little federal funding ever makes it to pediatric cancer R&D. I think this absolutely sucks. I do feel fortunate that my son is treated at Dana Farber, because it is the recipient of so much private fundraising (Go PMC Riders!).
Thank you for writing and sharing your experiences. With respect to your last column, I would doubt your daughters ever become upset with you for writing about them, but if they do, just tell them that you helped many other parents in the same crummy position.
You’re absolutely right that there is variance within the cure rates for leukemia. The 90+% average 5-year survival for ALL (and only ALL; not AML) that I quoted (which I’ve seen various places, including the St. Jude’s Website and American Cancer Society website) is an average for *all* forms of ALL, across all risk levels. And it’s an average, not a range. (I should add in the word “average” above, to make it clearer.)
So, the standard risk case 5-year success rate is actually higher than 90%, whereas higher risk cases (like your son’s, as well as Clio’s, possibly, as she’s an ambiguous case, being treated on the very high risk protocol) are lower. But the large majority of cases of ALL are standard risk, which is why the average skews to the higher end. Of course, all of these numbers are only approximations, and they vary according to different studies and reports as you noted.
And yes, your understanding is the same as mine that the basic drugs haven’t changed, but the combinations, doses and length of treatment has. (as well as the side effect management — thank God.) And, yes, the drugs are horrible, and I fear and dread the long term effects.
Thank you for adding the point about the importance of people donating to research for pediatric cancer!! It’s so woefully underfunded, for the reasons you state. (And because, statistically speaking, it’s “rare.”) It really does suck. We’re so lucky to be at DF.
And also, thank you for the kind words!
Jane, THANK YOU for writing this post. As a pharmaceutical company employee (and one who works in oncology drug development at that) it is very hard to read all the negative articles and comments blaming us for all the evil in the world. So I very much appreciate your enlightened view. Nicole, I know it must appear from the outside that drug companies are not motivated and/or do not care about developing drugs in rare diseases. I assure you that is not the case. Developing a drug in a rare disease is logistically very difficult simply because there are so few patients available to participate in the clinical trials we are required to do in order to get approval. However, that does not stop us. We just started a trial at Children’s Hospital in Boston last week for a rare sub-type of ped neuroblastoma (only 150-200 cases per year). We also developed a drug for tuberous sclerosis (a rare genetic condition) and are currently supporting a study for progeria (only about 80 people on the entire planet with this disease!!). I could give you many more examples. I suspect the reason you haven’t heard much about this is that unlike the people who promote avocado juice or squirrel innards as a cure for cancer, we are not allowed to discuss publicly unapproved uses for drugs for fear of being accused of off-label promotion (as Jane correctly points out). Even as I write this I am being careful not to mention either the company I work for or the drugs being studied in the examples I mentioned so I don’t end up in an orange jumpsuit. 🙂 Anyway, thank you again for speaking up on our behalf. Much appreciated.
Ugh, I would not be able to read those comments! In fact it’s impressive you even put yourself out there enough to blog because I’m sure you still get trolls here. I am glad you do blog though, I love reading your pieces so I decided to stop lurking and tell you so!
This is a very important post and I hope it is read by many.
I get particularly incensed by people who talk about vaccines as if everyone involved in them is motivated by greed, and there are no people in medicine trying to help others. It’s insulting to scientists and doctors and researchers who dedicate their lives to preventing suffering and death to accuse them of evil motives.
Glad to hear Clio is doing well.
I’ve gotten these comments, too – on my blog, on the article promoted on BlogHer, and from my own brother. Now, my brother is schizophrenic so conspiracy theories and paranoia come with the territory, but I still couldn’t handle it! I ended up blocking him on Facebook because he contacted alternative medicine professionals ON MY BEHALF. He also told me that hotdogs had caused my son’s cancer and that we were terrible parents who caused it…
It’s aggravating and stressful and really NOT helpful on top of the stress and worry we already have about our kids. Like you, I hate giving my child poison but this is how we fight this disease. I want to use the method that is the most proven and has the highest likelihood of working – I don’t want to gamble with my son’s life.
Also, I’ve worked with tons of doctors and scientists and I can vouch for the fact that they are largely not motivated by greed. They basically give their lives to helping others and are rarely NOT working – the monetary payoff and occasional notoriety aren’t in proportion with how much of their lives they give up.
Shit, Clio has eaten hot dogs too. Do you think your brother could be right??
Also – well said, Jane!!
It’s simply amazing to me what people will say to parents who are suffering, when the only best possible choice is: “I’m sorry. I love you. What can I do?”
Always love your blog, but this was an especially poignant one. It makes me want to rally! Have a Jon Stewart March on Washington to Restore Sanity!
The advances are amazing, and I don’t doubt for a second that Clio’s getting good care.
***
As much as I love science, and try to apply rational thinking to life, these seem to be dark days for science and medicine. Too many studies are paid for by the institutions they affect. Not enough public, independent research is done. Not enough funding for conditions that need and would benefit from it.
Guess I’m doubly angry about the cancer-curing-mango-juice and vaccine-causing-autism crowds. Medicine and science should always, intensely be questioned. Not because it’s bbbaaadddd, but because questioning is the way forward, to better science and better care. There are products, practices, drugs and maybe vaccines that should be scrutinized. Not all advances are positive. Asbestos was once the miracle material (and all natural too.)
But when the loudest voices of dissent are the tin-hats, everybody loses.
Hi Jane! I am so sorry that you are dealing with this. You absolutely have to take the treatment that is proven to work. There are no miracle cures that will work in isolation.
In addition to the excellent treatment, a diet consisting of whole foods, homemade vegetable smoothies, and no sugar cannot be underestimated. Food can strengthen our immune system to help it fight cancer, and doctors don’t address it. I know you have enough going on and there is no energy to focus on food in addition to everything else, but if you can afford to hire a part-time mother’s helper to come in and cook up a bunch of vegetables, legumes (lentils, beans), whole grains (steel-cut oats for breakfast, brown rice or quinoa for lunch, buckwheat for dinner, etc) a few times a week, and make fresh vegetable smoothies for Clio, it can definitely make a difference (if not immediately then long-term). Not to give another piece of unnecessary advice, but I highly recommend the Anticancer Way of Life by David Servan-Schreiber (a physician with cancer). It has made a huge difference in the life of my family when we struggled with adult cancer (thankfully, real food and vegetable smoothies are safe to try on a child; no studies required). E.g., in addition to Zofran for nausea, fresh ginger and fresh mint brewed in hot water (like tea) can help and is definitely tasty and energizing. Will it solve all our problems? No, but the entire holistic diet will incrementally boost the immune system to fight. Alternatively, processed food and sweets can weaken it. I am sure you know all of this already, just wanted to point out that there is a difference between a miracle cure and a holistic diet.
We are rooting for you and for Clio! You guys have gone through a lot of crap, and we hope Clio feels better the rest of your vacation.
I feel you very much. I have heard a lot of crap like this about my son’s autism and my son’s food allergies. I fucking hate Jenny McCarthy with a passion for that stupid misinformation she puts out about autism. You can’t cure autism with a special diet!!!
I don’t know why people feel compelled to act like they have all the answers especially when they are not even having to deal with what we are going through. Just pure narcissism I guess.
Unfortunately even people in the same situation you are in sometimes drink the kool aid and that seems almost worse. Thus why Jenny McCarthy irritates me so much.
Don’t be afraid to snap back at these people. I do. Maybe it will make them a better person and they won’t say it to someone else. I put a lot of faith in modern medicine. It does not have all the answers but when you look back in our past and see how it was normal for one or more than one of your kids to never make it to adulthood you see how far we have come. Kids died of totally cureable diseases that nobody dies from anymore. I am glad I am living in this time period. I would not have wanted to watch my child have polio.
I just finished Double Time which shouted out from a library shelf, “Take me, take me,” and because I am an old twin, soon to be 75, with my twin who was born first dying at 68, I read your book avidly. You are a good writer, and I’ll look for your novel. I just saw the reference to Clio’s struggles, and my heart goes out to you. I think, from your book, you are one hell of a mother, spunky, bright, you name it.
I had to work full time with just one child; at any rate, sending love, prayers and admiration and total best wishes for healing and wellbeing for all of you.
Alternative cure case, successful herbal medicine.
http://www.youtube.com/watch?v=mZSgUFjJUNA
Do you know which snake is the longest?
Everyone commenting on this subject is unbelievably ignorant, cancer cures are suppressed, I’ve had long conversations with several doctors about this and they say a doctors income comes from how long their patient is sick, how addicted to their prescribed drugs they are. Cancer is a MULTI-BILLION ALMOST TRILLION DOLLAR profit market. Let that sink in, almost a TRILLION dollars, that’s the size of Texas. There is a documentary online called the Cancer cure 40 years ago. It talks about the techniques that the pharmaceutical industry uses to disprove home remedies or alternative medicine. MONEY talks people, don’t put the corruptible heart of man above this kind of act.
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