Update
My first real data since radiation and Lynparza is in and it is remarkable. The tumor markers in my blood, known as Cancer Antigens (CA) 15-3 and 27-29 are steeply down. To fight cancer, we produce antigens, and these two have been identified with fighting breast cancer. The greater the number, the greater the concern. My last set before this, as you can see, seemed dire, with results near or above 7000s. Of course, normal levels are under 35 and 32, and mine are still in the 800s, but the tumor markers in my blood have gone down by the thousands.
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| My historical tumor markers for CA 27-29 |
Is this the radiation? Is the Lynparza working? Is it the unreliability of the test I have been warned against in every previous draw? I’m not really sure, but I am happy to see this; it’s the first decline in my tumor markers since I received my stage IV diagnosis.
The Lynparza is still a bit tough, but some of the difficulty has evened out. I still have an ever-present tendency toward cystitis and UTIs, and a strong and rather disgusting taste of metal about three hours post-dosage. Because I’m tracking these things, I know that the pH of my, um, various fluids becomes rather acidic at that point, until I am able to flush or change it. (Ironically, hydration is a poor solution to the problem — water tastes like battery acid.) Avoiding UTIs is like balancing on a pH tightrope, so I now have prophylactic antibiotics and Cystex, which help.
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| My historical tumor markers for CA 15-3 |
My bloodwork shows I am clearly and chronically anemic, although my numbers seem to have evened out. I also end up taking a nap at least once a day. But this fatigue is a little different: while I feel fine and even energetic just sitting, I wind myself walking up stairs. My red blood cells can’t seem to get oxygen to recover from effort. I'm not as tired as I am unable to do things.
Looking for Support
I had joined a support group for those taking my drug, but I left it when it was suggested that we shouldn’t post negative outcomes. Apparently, some folks are really enjoying success, and they don’t want to hear from the nabobs of negativity (Spiro Agnew reference for you history buffs.) I’m just not one of them, or at least one with an easier path. I am not wholly alone, but the cheerleaders of the group will brook no negativity. I rely on support groups for learning and camaraderie, so I left. I’ve been invited back, but I haven’t rejoined as of yet. I’m just not sure I want to criticized for honesty by the passive-aggressive. I have a few other forums to fall back on.
I did call Astra-Zeneca, as I mentioned, and learned a bit from them. Their pharmacist was right: some of the symptoms got easier about six weeks in. I’m not going to be as critical of “big Pharma” as I used to be; they have been very helpful overcoming some of the difficulty with this drug. I will still be critical of the hedge fund owners that are jacking up prices. My drug is in the middle of the new therapies: only $13,000 a month. But hey, insurance covers it, once my out of pocket is reached. And AZ may help with that. I am grateful.
Mythbusting for Cancer
That brings me to my subject today: cancer myths. I see so very much quackery out there. And the stuff lands on my Facebook timeline regularly. Someone reposted the “there’s a cure for cancer but Big Pharma won't tell you to make money” nonsense again. Other times, I see miracle cures through diet (no sugar, no phytoestrogens, take baking soda…no asparagus? I love asparagus!) Although I didn’t challenge the latest Big Pharma post directly, please let me emphasize that most of this crap is pure drivel. In a sort of rebuttal, I posted this wonderful article:
I like the article because it links to the science behind each debunking. No, diets don’t cure cancer, and there is only a weak relationship to prevention (like alcohol and breast cancer.) Big Pharma isn’t sitting on some miracle cure for cancer in order to make money. Cancer can be prevented if you get a mammogram. (You aren’t preventing — you are detecting early, which may or may not help you survive.) I see these almost every day on my Facebook timeline or worse, in Messenger. My heart hurts from the number of good people I know who fall for it.
Interestingly, one of my Facebook friends brought up the positive outcomes she’s had with a no-sugar diet. The blogpost specifically refutes that outcome, although I’m sure eating well helped her grapple whatever cancer she fought. But the words “a tumor is sugar” is a gross misstatement of what a tumor is. A cancer tumor is a grouping of cells, the descendants of perhaps one evil stem cell, that have (usually set of ) specific genetic mutations in their DNA, causing them not to die as they should, but instead turn into voracious, rapacious killers, replicating and demanding resources, converting others to their evil ways. There are between 100 and 200 human cancers out there, depending on whether you are in the US or the UK, and their different definitions. There is no one solution for any of them, sometimes no one solution for even one of them.
And as proof that Big Pharma doesn’t sit on cancer cures, there is one that can be cured, potentially. Childhood leukemia, considered a soft tissue cancer, has a new treatment the holds the potential of a real “cure.” There is also risk for a major set of side effect: reactions that are nearly as lethal. There is an ironic twist, however; it costs nearly $500,000. Now, that’s how you turn a profit on a drug! (Note: this therapy, called CART-T cell, is a long way off for solid tumors like breast cancer, if we can make it work at all.)
As a reminder, I expect no cure for my metastatic cancer, but even in earlier stages, “cure” is a misleading outcome. Regardless of any treatment, at least prior to the leukemia cure, any of us who develop an early stage cancer of any kind faced a 30 to 40% chance of developing metastasis, sometimes years or (in my case) decades later. A large portion of metastatic cancers are detected first at this stage as well. We don’t have a good handle on the numbers and the outcomes, but we know that 609,640 US residents die each year — and of those, they die from complications of the cancer that kills: metastatic cancers. Read more: https://seer.cancer.gov/statfacts/
This is especially true of solid tumor cancers like breast, colon and so on. No one has a handle on a specific why, partly because there are 200 cancers that may do this awful, metastatic deed, and each behaves so very differently. And once you are metastatic, they stop trying to “cure.” The doctors move, instead, into survival mode, seeking to extend the patient’s life with treatments that will reduce the cancer and tame it into submission for a time. New therapies that target the genetic mutation in the cell are becoming commonplace. Time will tell (about 10 years, to eliminate short term bias) if they help.
I want to make it clear that cancer treatment is no longer just nausea, chemotherapy and hair loss. It might also be pills, a series of weird side effects (SEs for short) like cystitis, hand-foot syndrome, fatigue, anemia and vulnerability to pathogens. We may also extend our time considerably — or not. Nor is the extension a walk in the woods. It all sucks so far.
We are making progress, but I honestly wish we had Star Trek technology. If we could transport, we could also transport cancer cells into oblivion, cell by cell. No more broad brush strokes that affect everything.
Now that would be a real cure.
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