Category Archives: File under between a what if rock and a no answers hard place

Personalize Medicine: A Personal Story

breast cancer

Maybe you’ve heard of it: Personalized medicine. Or sometimes it’s called precision medicine. The idea is that through a series of tests, researchers decode a cancer patient’s DNA plus the DNA of the tumor to see what’s gone wrong. Then they find drugs to “fix” or bypass the problem in hopes of creating a cure.

For some cancers, this has gone splendidly well. For certain types of blood cancers and even rare cancers, it’s been a game-changer.

Breast cancer, though, is still in precision medicine infancy. And for me, who only has cancer in small spots on my bones, it’s been a fight to even get a seat at the table. Part of the problem has been that biopsies of bone tumors are unreliable. That’s because the tumor mixes in nicely with the bone, so that when a sample is taken, you need to separate the two, usually by dunking the sample in acid to disintegrate the bone. You don’t need to be a rocket scientist (or even a cancer researcher) to figure out that that’s going to be a problem that could alter the tumor cells.

My first biopsy to take advantage of this new research was two years ago. The sample wasn’t good enough – there weren’t any cancer cells in it. By the time I got the results, I was on a treatment that was working so my oncologist recommended waiting until it failed (plus, I imagine the health insurance company weighed in, refusing to pay for two biopsies so close together).

This past summer that treatment stopped working and it was time to take a look at new options. I underwent another biopsy and this time – hallelujah! – there were cancer cells in the sample. Not a lot. Only 20% of the sample  was cancerous. The rest were normal cells. Pretty remarkable, if you ask me.

The findings: My DNA, as far as they can tell, wasn’t preprogrammed for cancer. That means the cause is likely environmental.  As far as the tumor’s DNA, researchers could only find three things wrong with it. For one, my AKT1 “is mutated at low frequencies” – meaning the gene is broken. This gene has to do with putting together proteins so the cell can carry on healthily. I also have an amplification of two genes – PAK1 and PTP4A1 – meaning, there are far more of them than a healthy cell needs or has.

The good news is that there is a drug in clinical trials called AZD5363 that turns off the AKT1 gene. More specifically, one of the three clinical trials available targets breast cancer, using the drug in combination with both an anti-estrogen drug and an anti-androgen drug. Turns out, my tumor is scarfing down both of those hormones.

The bad news is that it’s very unlikely I’ll qualify for the clinical trial because my cancer is only in my bones, a clinical trial exclusion. Researchers like to look at tumors they can see, not tumors mixed up with bones that are hard to get a read on.

Still, I’m not undaunted. For now, I’m on a low-dose chemotherapy drug called Capectitabine that seems to be working. My blood tests are coming back nearly normal. I’m heading for a PET scan in two weeks which will let me know for sure, but so far my blood tests have been reliable. According to research by the MBC Project, this drug seems to work for a longer period of time than other treatments. I’ve been getting about 18 months out of a treatment before it fails. It would be great if I could get more time than that.

Second, the FDA is liberalizing it’s “compassionate use” policy. This allows a patient like me to appeal for a promising drug, even though I wouldn’t be included in the clinical trial. It’s a deal the pharmaceutical company or researcher would also have to sign off on (particularly because they offer the drug for free under compassionate use). A recent study showed that when asked, drug companies usually say “yes.” We’ll see if that changes with the new FDA policy.

Fighting cancer is a lot like playing pool. The goal isn’t just to sink a ball into a hole, but to also line up the next shot. For me, that means reaching out and making contacts among researchers, drug companies or the FDA who will be beneficial when this treatment fails so I’m not flailing around when it does. I learned this past summer, the appeals process can take longer than I have to give it.  I just don’t have time for the learning curve.

In the meantime, I’m tuning up my brain, reading books like The Organized Mind” Thinking Straight in the Age of Information Overload by Daniel J. Levitin, which has a chapter titled: Organizing Information for the Hardest Decisions When Life is on the Line. I’ve learned that going forward I’m going to be forced to make life-altering decisions with limited information that is constantly changing.  I may make a decision today and tomorrow get new information that would change the decision entirely. Sometimes I can change my plan based on the new info, sometimes I can’t. The best I can do is prepare a strategy that allows me to evaluate the best option in the moment.

For now, that will have to do.

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The Magic 8-Ball Answer

I built you to weather this stormAm I the only one who had a Magic 8-Ball whose only answer was “Future unclear, Try again later?”
At least that’s the only one I recall , which is precisely the answer the universe is shouting at me these days.
Since my last post I have received my latest blood tests which show that after a month on the lower dosage of this drug Ibrance my numbers are still creeping up. And I’m doing just what I said I’d do. Next month I’ll go back to the higher dosage and endure the painful side effects while I await information on a new clinical drug trial for immunotherapy – a drug that teaches your own immune system to recognize and kill the cancer cells.
I have a plan, I’ve activated it, I should be fine, right? So why does it feel like I’m standing on the corner of No Answers and What If?
My mother, the greatest catastrophe thinker of all time (really, she missed her calling. She should have gone into disaster preparedness. ) puts a name to what I haven’t been able to.
“What if this cell is drug resistant?” she said. “What if nothing kills it?”
And the knot in my stomach tightens.
I have lunch with a friend whom I learn has a great depth of spiritual knowledge. She believes we’re here to fix something we missed the last go around. She suggests that I’m going through this so that I can tell the story. That through it, others will find their own strength and hope. And the knot releases a while.
This morning I run into my pharmacist while walking my dogs (Yes, Frenchtown is a bit like Mayberry that way.) I ask him about ketosis strips as I contemplate pursuing a Ketosis Diet that calls for fasting intermingled with high protiens, high fats, minimal carbs. The theory goes that all cells consume glucose – including cancer cells. When there’s no glucose, cancer cells can make their own for a while, then rely on glutamine. But healthy cells can survive on ketones – produced by this diet – while cancer cells whither and die of starvation. Yes, it’s a drastic change. And I know this all sounds a bit crazy. Crazy is where you go when you run out of plausible answers.
It’s usually about this time that I start a rant, er, I mean conversation with God, who usually does all the listening while I talk. But this time he sends me a message to help me untie the knot:
“I built you to weather this storm,” he says.