We interrupt this blog to discuss something I have been wanting to take the time to put together for awhile. This post has been sitting incomplete for over two months already. Maybe it's time to pull it out of the drafts folder.
So here goes. All of the treatments Daniel is on, what they are, and why they are the ones chosen for his particular cancer.
We see "miracle cures for cancer" touted everywhere. And it is easy to understand why. Why wouldn't we want to hope and believe that answers are available, free, and easy? It is so alluring to believe that maybe healing can be found in something simple without walking the fine line of a drug threatening to kill the body the cancer lives in, in order to kill the cancer. Drink this juice. Flush this organic coffee...ahem...where the sun don't shine. Eat two pounds of strawberries a day. Cannabis oil. Turmeric. Vitamin C. Essential oils.
The more I find out about how cancer works, the more I realize what a truly complex disease this is, and how impossible a one-size-fits-all approach would be. As well as how oversimplified so many of the common things we hear about cancer are, especially in this age when everybody with a wifi connection is a health expert. Things like "sugar feeds cancer", "cancer can't grow in an alkaline body", "a healthy immune system will protect you from/cure cancer", and "natural killer cells!" If only it were that simple. It does seem like it should be when one hears about the latest triumph of an overhauled diet, a concentrated plant compound, a new way to help the body heal itself. Sure, we can limit our exposure to things that create damage in our bodies. And we can give our bodies the best possible building blocks to support healthy cell replication. Just like we can cut down our chances of getting a flat tire by not driving through a construction site. But once we remove all the things that will likely cause a tire puncture, we aren't guaranteed we won't still go out one morning to drive to work, and find a flat. Because sometimes, tires leak and cells just don't quite replicate like they should. Always have, probably always will. Genetics. Random errors in the millions/billions of complicated DNA replications that occur every day.
I came across an excellent article the other day that explains how cancer is not a modern disease, why some things may work sometimes, but why nothing will work every time. How not only is every body different, but so is every cancer, how cancer is becoming less of a death sentence the more we continue to unravel the mysteries of DNA, and what sort of therapies are on the horizon: http://gawker.com/green-juice-will-not-cure-your-cancer-1705579750
The thing is, some of these "miracle cures" do work, to a certain degree and in certain applications. Maybe even well enough to catch the interest of researchers. Many things can kill cancer, but not many can do so effectively enough to bet Daniel's life on it. But the thing that has most blown my mind throughout this experience so far is the sheer amount of research that has gone into the creation and use of the drugs we do have, which have made cancer (albeit slightly) less terrifying than it ever was before. Who figures these things out? Who even knows to look at these obscure mechanisms and functions within cells, and finds ways to change the way they behave? Who figures out the millions of tiny factors that go into making our bodies tick along on a cellular level? Furthermore, who, once they start to understand the way the body works and the medicines we take to help it heal, can say that an entire field of study is suppressing emerging discoveries that might work in order to keep using the ones that don't? If it (whatever It is) works as well as the internet says it does, the medical field generally wastes no time co-opting it, isolates whatever it is that makes it so effective, synthesizes or finds a way to mass produce it, and makes a craptillion bucks.
Plants, they say. Nature has given us everything we need to heal ourselves. Traditional cures, folk remedies. Go back to ancient times. Essential oils and plant compounds. And this is sometimes true. Instead of ignoring folk cures, modern medicine has taken a look at the ones that produce actual, major results, and has given us, for just one example, Vincristine. Vincristine is a plant alkaloid, extracted from the leaves of the Catharanthus Roseus, or rosy periwinkle. In the '50's, while studying this plant because if it's tradition of being a healing plant, and having discovered it contained a very high number of plant alkaloids, researchers found one of these alkaloids caused mice with leukemia to live longer. This is because it interferes with the function of microtubules, which are responsible for moving nutrients through cells, so the cell cannot divide properly (or, in the case of cancer, improperly). Fast forward, it was approved for use in humans. Because it was very effective. This is an example of something that is free to everyone, a common plant, that "big pharma" had no interest in suppressing for profit but instead studied to see what made it effective, isolated the active compounds, and now sells for far more than they would have ever made selling drugs that do not work as well. It causes a little nerve weirdness, I believe jaw pain, tingling and numbness in the fingers and toes, and hair loss, which for Daniel, was not complete loss, just a slow thinning. Daniel has had many Vincristine infusions, and will have many more in the next three years.
Granted, I am sure I am doing a lot of oversimplification myself, here. My murky understanding of these things barely scratches the surface. I know only enough to know I don't even know how much I don't know. (Y'know?) Again, with questioning my life's choices and not getting a degree in a scientific field that would better equip me to understand these things, because I really do want to understand.
Nutrition. Well...that's complicated. In the late '40's, it was observed that mice with leukemia given folic acid did much worse, experiencing much more rapid deterioration. Apparently folic acid fed the cancer exceptionally well. So off to the lab, where they synthesized a substance, methotrexate, almost identical to folic acid. Almost. So close our cells do not know the difference, so the uptake of this substance, which does not behave like folic acid, crowds out the uptake of folic acid. And sure enough, without folic acid feeding them, the cancer cells die. By the '50's, methotrexate was being used to treat cancer in humans. Of course, blocking folic acid uptake for too long is problematic for overall health. So when it is given in high doses, after allowing it to work for twenty four hours, another drug is administered. Leukovorin, a form of folic acid, again feeds the cells and stops the effects of methotrexate in the body.
A lot of chemotherapy treatments are based on limiting needed compounds to cells at certain times in their cycles using substances that were formulated to be almost identical to a substance in food or created by the body. So close to identical the body doesn't know the difference, but just different enough they are unable to perform the same function, the absence of which starves the cell at certain times in it's cycle, screwing with the cell's ability to replicate. Nucleic acids are substances within cells that allow them to transfer their genetic information, including the information telling them how to replicate and when to stop replicating, from one generation to the next. Purines and pyrimidines are two of the building blocks of these nucleic acids. Cytarabine, the subcutaneous shots we've been giving Daniel at home, is just similar enough to pyrimidine that the cell tries in vain to use it instead of pyrimidine to build these nucleic acids. And Mercaptopurine does the same, mimicking purine to gain access to the cell, then damaging it from the inside out, thus preventing the cell from passing on it's instructions to divide too rapidly on to the next generation. Without this misinformation, the next generation of cells returns to it's standard rate of replication. Thioguanine, an upcoming oral chemo, does the same with guanine, another compound essential to cell replication.
I think we've talked about bacteria-derived asparaginase, the way it works in the body to break down the amino acid asparagine, which healthy cells make for themselves, but cancerous cells have to draw in from the body in order to survive. And you'll remember Daniel's swelling reaction to it, and our resulting switch from E-coli derived PEG (polyethylene glycol) Asparaginase to Erwinia Chrysanthemi derived asparaginase. In 1953, it was observed that lymphomas regressed when treated with guinea pig serum- literally what it sounds like. Serum from the blood of guinea pigs. Apparently that's a thing. So they took a closer look and determined it was not the actual serum suppressing the cancer, but an enzyme in it called asparaginase. So they began looking at asparaginase from other sources, comparing the effectiveness, and determined the most effective asparaginase enzyme comes from two bacterias- E.coli and Erwinia chrysanthemi. This is an example of research weeding out treatment that is slightly less effective in favor of treatment that is more effective. So far, Daniel has had three doses of asparaginase. Well, two and a half. The third dose was that $209,000 series of shots. Which we have two more rounds of.
In the 1950s, an Italian research company began looking for anticancer compounds in soil microbes. A previously unknown strain of bacteria, Streptomyces peucetius, which produced a red pigment, was discovered near a 13th century castle, the Castel del Monte. The active compound in the bacteria was isolated and used to create an antibiotic that was effective against tumors in mice. The two research teams who discovered it called it Daunorubicin, a combination of "Dauni", an ancient tribe that once lived in the area, and "rubis", French for "ruby", after it's red color. In the 60's, the trials moved from mice to humans with leukemia and lymphoma. By the late 60's, it became apparent the drug, while effective, could also cause fatal damage to the heart. With later changes, intentional mutations to the compound, a different red colored antibiotic was created and named Adriamycin, which was later renamed doxorubicin. Doxorubicin has even better anti cancer properties than Daunorubicin, but unfortunately the heart toxicity was not changed by the tweak. This is why Daniel recieved an echocardiogram at the beginning of his treatment and will be monitored while receiving Doxorubicin. No other drug has the potential to damage his heart like this one. It works by stopping the movement of an enzyme, topoisomerase II, through the cells it comes into contact with. Without this enzyme, supercoils in DNA cannot relax to begin replication, nor can they reseal, so no replication of those cells means no errors in replication get passed on to the next generation. Or something. I read somewhere it has also been referred to as "Red Devil" or "Red Death" because of it's color and toxicity level. This is one still looming, one we have not recieved yet. I believe this is one Grandma Sandi also got. Or was it Grandpa Jim? I can't remember anymore. I only know it sounds familiar.
The last drug in the arsenal that's being used to treat Daniel's cancer is cyclophosphamide. I am admittedly very foggy on the details of precisely how this one works, but it has to do with disrupting DNA. Toward the end of the first World War, mustard gas was being used on troops, instilling terror of biological warfare- a weapon nobody could fight. As the beginning of the second World War loomed, chemists were frantic to find an antidote, so they started by studying the effects of mustard gas in the bodies of soldiers affected by it. Since the ability of mustard gas was known to suppress immune cells, the same cells that are overproduced by leukemia or lymphoma, it was theorized that it might be effective at suppressing cancerous immune cells as well, and could be used to treat existing leukemias and lymphomas. In the following years, the formula was tweaked and honed to be more damaging to cancerous cells and less toxic overall, and evolved into, among other formulations, the drug cyclophosphamide. Since it is highly toxic, they try to limit the doses to the absolute mimimum needed. The most noticeable side effect, aside from the usual chemo lineup of hair loss, nausea, potential organ and tissue damage and various neuropathies, is how badly it makes Daniel's eyes burn when it is being administered. Tears run down his cheeks and snot pours from his nose faster than we can mop it up for the thirty minutes it takes to push it into his bloodstream. These infusions are accompanied by six hours of as much fluid as he can handle to limit it's chances of staying in his body long enough to create life threatening side effects, including a secondary cancer such as Acute Myeloid Leukemia or bladder cancer. So far, he has had two doses of cyclophosphamide. I believe Grandma Sandi also got this one.
Together, these drugs represent an attack against cancer from every known angle. Since no single line of attack is going to be one hundred percent effective, if one misses mopping up all the haywire cells, another will hopefully succeed. Yes, there are risks. Huge ones. And yes, there is the probability other lines of defense already exist that are not mainstream yet. But leukemia was the first cancer to be successfully treated by chemotherapy. This complicated (to us) barrage of treatments has been fine-tuned for over sixty years. Hospitals all over the country share their info with each other, participate in the same clinical trials, give identical treatments and painstakingly chart results, and this has turned a death sentence into a sometimes (depending on the subtype) over ninety percent chance of long-term remission. This is better odds than any "natural" alternative treatment for this type of cancer. And there is a reason for this. The reason is collective knowlege from thousands of research labs and brilliant minds who understand disease and the human body far better than I can ever hope to. And lots and lots of failures, aka deaths, which they learned from. And continue to learn from. We keep repeating to ourselves that we live in the right time, in all of history, to get cancer. And the time will just keep getting better the longer we live. If we had not waited eleven years to have Daniel, but instead began having kids immediately after we got married, we would have gone through this ten years ago. And in the last ten years, success rates have inched up just that much more. It's a great time to be alive. And to stay that way.
Very interesting lit review summary of all the Usual Suspects! My daughter has been in treatment for ALL since February, and just had her final dose of thioguanine last night - the very last dose of anything in the high intensity chemo program before going on maintenance. I thought this might be an emotional milestone to reach, but really we're just exhausted and a little flat after the final treatment block. However, my daughter has been lucky (in that relative sense of a cancer patient) in that she has tracked standard risk the whole way, and hardly had any side effects from the chemo (of course, all that hair that started to regrow in the middle months, is now gone again after the return of vincristine and doxo in the final treatment block!). She'll have about 4 months before starting kindy, so hopefully will have a little cover by then so she doesn't feel "different" from the other kids. Great blog, and good luck to you and young Daniel.
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