Tag Archives: metastic breast cancer

Cancer in abeyance, a cold and broken hallelujah

breast cancer cure

“I’ve heard there was a secret chord, that David played and it pleased the Lord. But you don’t really care for music do you?

Last week I got the news every cancer patient wants to hear: Scans show No Evidence of Disease. My cancer is in abeyance.

“It goes like this, the forth, the fifth, the minor fall and the major lift. The baffled king composing Hallelujah.”

Do I feel a sense of relief? Do I want to scream Hallelujah? Absolutely.

“Your faith was strong but you needed proof. You saw her bathing on the roof, her beauty and the moonlight overthrew you.”

Do I want to believe there was something I did right to make this happen? Yes, again. But I also know better.

“She tied you to a kitchen chair, she broke your throne and cut your hair, and from your lips she drew the hallelujah.”

Yes, cancer has been that evil mistress who has thrown me to the ground, made me say uncle, then laughed at me mockingly as I struggled to get back up. Cut my hair? Hell, she sheared it right down to the scalp. And when chemo was done and it started to grow back, yes, she drew from my lips a hallelujah.

“Baby, I have been here before. I know this room. I’ve walked this floor. I used to live alone before I knew you.”

Even with cancer in abeyance, I no longer live alone. She lurks like a shadow within me, rogue cells slithering undetected in my blood, my bones, my organs. As I get back to my life, I struggle with this acceptance. That it’s not over. That it will never be really over. Not until there’s a cure.

“I’ve seen your flag on the marble arch. [Cancer] is not a victory march. It’s a cold and it’s a broken hallelujah.”

It will return. I try to put that out of my head. I try to celebrate this moment, this win. I celebrate with a broken hallelujah.

“There was a time you let me know what’s real and going on below. But now you never show it to me do you? And I remember when I moved in you. The holy dark was moving to and every breath we drew was hallelujah”

A time when I could trust my body, the idea that if I was feeling healthy, I was healthy. That if everything seemed OK, it was.

“Maybe there’s a God above and all I ever learned from love was how to shoot at someone who outdrew you.”

There was a time when everything was clear cut. When I aimed at a target and hit a bullseye, I was done. I’d made my mark and could move on.

“It’s not a cry you can hear at night. It’s not somebody who’s seen the light. It’s a cold and broken hallelujah”

I can not explain what it’s like to live a life turned-upside down, to fight to bask in the light of good news in this moment, despite the darkness that certainly lies ahead. Yes, it’s a cold and broken hallelujah.

All the same, it is hallelujah, hallelujah, hallelujah.

 – Quotes are lyrics to”Hallelujah” by Leonard Cohen.

 

 

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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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Finally, good news for metastatic breast cancer

Breast cancer and exerciseProbably the hardest thing for me to embrace about my situation is the lack of answers. My doctor can’t tell me if a med she’s prescribing will work, or if it does, for how long. The only thing she can guarantee is that at some point it will stop working.

So a study released today that says exercise can reduce the risk of dying from breast cancer by 40% is probably the best news I’ve heard since the advent of chemotherapy.

To put it in perspective, many cancer drugs that the FDA approves have success rates lower than that.

The study goes on to debunk the myth – and relieve our guilt – that what we eat has anything to do with combating the disease. “Women with breast cancer don’t need to make extreme diet changes (like cutting out meat, dairy, sugar, soy, etc.),”  said Dr. Ellen Warner from Odette Cancer Center at Sunnybrook Health Sciences Center in Toronto, who coauthored the review of more than 70 research articles and publications. “There is no evidence any of these are effective. They can eat anything in moderation and following Canada’s food guide would be helpful if they don’t know much about nutrition.”

Yes, she concludes, a diet in high-saturated fat definitely spells trouble, while soy products – which at times get a bad rap because they mimic estrogen – can actually improve longevity.

Exercise, on the other hand, is the Holy Grail. The study recommends 150 minutes of activity per week, which it says less than 13% of breast cancer survivors do.

I count myself among that 13%. And I can only add my own anecdotal evidence, that exercising is what is keeping me sane. Working out improves my mood. It chases away the fear. It grounds me. It’s my Xanax. Yes, it helps me keep my weight in check. And I’d hazard a guess that by using my body more, it makes it healthier, more robust and therefore, on some level, able to fend off the rapid spread of this disease. If I had any recommendation to give someone in my situation, vigorous, heart-pounding, sweat-gushing exercise would be it.

More importantly, though, this study gives me something I can actually DO to keep my disease in check. It takes away my helplessness which can lead to hopelessness.  And it takes away the guilt that I’m not doing enough.

As cancer patients, we need more information like this – studies that show us habits that lead to better outcomes. I’m willing to make many lifestyle adjustments, but I need to know that they are having an impact. Someone telling me that he beat cancer by juicing or she did by ingesting a lot of cannabis is all well and good.  But a study that shows that thousands of people did one thing and changed their lives – well that’s something I can take to the bank.

 

 

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