Herceptin, Risk Taking, and One Strong Bitch’s Fifteen Year Battle with Cancer

Katherine* is slowly watching the levels of cancer antigens (CA) 125 and 127 in her blood stream rise beyond their normal range. Not a good sign. She knows the cancer is growing again somewhere in her body, but she’s not quite sure where yet. This sixty-six-year-old woman has survived three bouts of cancer over the past fifteen years- breast, lung, and bone- and is preparing for what might be yet another round.

After spending time with Katherine, most people would agree that it’s best just to not get in her way. “I just feel personally that I’m just one strong bitch,” she told me in a phone conversation.

“I’m going to continue on because I’m here for a reason and a purpose. And if it’s to give to the medical society. …Yeah, I’m good with it.”

We often use this space on Life Science Nexus to talk about the great innovators and risk takers out there. The life science, tech, food entrepreneurs, etc. Yes, these business people are trailblazers, but we often forget those risk takers who actually have their lives, not just their livelihoods, on the line. These intrepid people who are so encumbered by illness that they’re willing to push the boundaries, try the unvetted treatments and therapies, and risk their health to create hope for others who may travel down that same path.

I was honored to speak with two brave, strong women over the past months who shared their personal stories of illness, risk, and journey back toward wellness with me. They are the true entrepreneurs, the real risk takers, who face battle over their own health every day.

If nothing else, I hope these women’s stories will inspire us all to take that risk, go out on that limb, because our gambles are so much smaller than theirs.

Katherine knew something was wrong with her own body well before any doctor could actually give her a diagnosis. “In the second week of January 2001, I was perfectly healthy. I had had a mammogram a year and a half before. Everything was fine,” she explained. Then everything became distinctly not fine. One of her breasts became extremely itchy and the skin intolerably dry. A friend suggested putting some mineral oil on the skin to relieve the discomfort, which she did. It didn’t help.

Soon after, Katherine went to her normal gynecologist who suspected she had a blocked mammary gland and ordered up an ultrasound and another mammogram. Both tests turned up nothing extraordinary. Still dissatisfied, she finally went to see a surgeon. “They were all in agreement that it was an infection in my breast and had given me antibiotics,” Katherine explained.

They were all wrong.

“…the breast became worse and worse and worse and finally it was diagnosed eight months later as inflammatory breast cancer.”

Inflammatory breast cancer is a very rare, very aggressive form of breast cancer that occurs when cancer cells block lymph vessels in the breast. Inflammatory breast cancer can often be confused with breast infection, which is exactly what happened in Katherine’s case. The disease is locally advanced, meaning it spreads from its point of origin to surrounding tissues and often into the lymph nodes, which also turned out to be the case with Katherine.

Katherine was diagnosed with stage IV inflammatory breast cancer, it had spread to the lymph nodes, and given eight months to live. It’s now close to fifteen years, or one hundred eighty months, later. Even today, stage IV inflammatory breast cancer patients have a life expectancy of twenty-one months, according to the American Cancer Association.

This bitch is strong.

“The emotion at the time to a woman or anyone that has been diagnosed with a terminal disease is very hard to explain. Very, very hard. And each and every individual takes it differently. …Do you let everybody know and then they feel sorry for you and you’re not treated as you normally would be? Because I could remember saying when you stop including me in major things, for input, then I’ll die of a broken heart before I die of cancer. Because you treat me differently, because I’m ill. And I think I’ve proven that. You can’t do that to me.”

This bitch takes no prisoners.

Luckily, Katherine lived very close to one of the top women’s hospitals in the country. After she finally received the correct diagnosis, she underwent radiation to try and shrink the size of the tumor in the breast. It didn’t work. In February 2002, she had a single mastectomy and had as many malignant lymph nodes removed as her surgeon could access, which turned out to be sixteen.

“And all I could say to [the surgeon] on the phone was sixteen was my lucky number. And he did not agree,” she quipped to me on the phone.

Soon afterwards, Katherine found her oncologist, a man would would travel down this path with her for the next fifteen years. She was put on a relatively new drug called Herceptin. “I started on that sweet little bag of Herceptin on March 15, 2002, the day that my father died of lung cancer. And from that day on, I’m administered an IV dose of that miracle little bag that has kept me going through stage IV advanced inflammatory breast cancer,” she said.

This bitch is so strong.

Herceptin (Trastuzumab) is a humanized antibody- a specialized, Y-shaped protein- that binds very tightly to the extracellular portion- the region sticking out of the cell- of human epidermal growth factor receptor 2 protein, or HER2. The HER2 protein is found on normal cells in the breast but can become massively overexpressed in primary breast cancer cells, where upwards of two million copies of HER2 might be inserted on the cell surface.

Isn’t more, better? Not in this case.

The higher amounts of HER2 protein on the cell surface of primary breast cancer cells causes higher levels of signaling from the protein, into the cell, than would occur in normal cells. This excess signaling leads to very rapid cell proliferation, underlying the aggressive nature of the cancer. Herceptin antibody can bind to the portion of HER2 that sticks outside of breast cells, turning down signaling from HER2 and slowing down cell growth and tumor progression.

This whole process is something I can never imagine going through, let alone go through and not spiral into depression, self-pity, and extreme bouts of ice cream ingestion. Even at the darkest points, Katherine pushed forward with humor and optimism.

“I have kept records. I’ve kept a book. I’ll tell you in the back of my medical book there’s a story of me without my right boob standing up at — Women’s Hospital, having two plastic balls laying in my lap, drain tubes, with a flannel shirt on because they told me to wear something loose. I never felt so manly in my life. To stand up and have two balls hanging down and half of a chest wall and a flannel shirt on. And I thought, ‘Oh God, is this what it’s going to be like?’” she told me over the phone.

After the mastectomy and lymph removal, Katherine had forty-five rounds of radiation treatment on the mastectomy chest wall where the skin was intentionally burnt off to remove any remaining cancer cells.

At the time of Katherine’s initial diagnosis in late 2001, the internet just wasn’t the information monstrosity that it is today. Sometimes we forget this. So hordes of information about her diagnosis, whether accurate or not, was not at her fingertips.

“Because now with the internet, people are so up on everything and can read more and more and more all the time. And you can follow your research, your pharmaceuticals, knowing what’s going on step by step. When it’s been up for FDA. When it’s been approved. When it’s not been approved. Why it’s been denied. Which when you’re in this type of position, every bit of hope is a ray of light to know this could help me or someone else, be a mother longer, a sister longer, a daughter longer,” she said.

Instead, Katherine banked on hope, faith, optimism, and her medical team who kept her going over the last fifteen years.

Fate, nature, genetics, whatever you want to call it, was not yet through with Katherine.

“In 2007, I had watched for one year a cancerous growth grow on my lung, until it reached the size that they could take it out,” she explained. So she went back into the hospital for a partial lobectomy of the left lung and then was “put on my way. Still on Herceptin. Still on chemo drugs.”

But the drugs weren’t enough. In 2011, the cancer had spread into her sternum and she underwent forty-five rounds of radiation to try and kill off the malignant cells.

To date, Katherine still receives Herceptin through an IV in the arm every twenty-one days, a chemotherapy shot every thirty days, and regular treatment with Xgeva for the bone cancer. But right now, she’s watching the level of cancer antigens in her blood rise, suggesting that the cancer is growing yet again. Her blood numbers may level out. They may not. If not, it’s time to reengage the attack mechanisms.

“There was one drug left for me two years ago, when this started to grow again. If it would start to grow again. Which, in all honesty, I knew, [my oncologist] knew. I didn’t fool myself through any of this. …This evil thing lurks. Lurks, just waiting for something to spawn it. …I’m what you might call a lifer,” she surmised.

If it is true, and the cancer is growing somewhere in her body again, I think this bitch will give it a run for its money.

Katherine outlived the career of her oncologist, a blessing and curse to any cancer survivor. Her beloved oncologist, who walked with her through fifteen years of treatment, retired last December. Now Katherine’s on the hunt for a new oncologist who can pick up the torch and help her navigate the road ahead on this battle.

Before he retired, her oncologist told her there were five drugs on the market now for her condition, leaps apart from this same point fifteen years ago. Now she just has to find the right drug, with someone else.

“[My oncologist] let me know that there’s hope. That I will have something to go with. And not only one, but five. Thanks to all the researchers and all the trials that everyone has done and put in. Those many, many hours in the labs and doing many interviews and papers. So for that, I’m so appreciative. I really am. And now I’m going to find a new oncologist and he or she is going to help me continue on, possibly, let’s say, another fifteen years. I’ll be optimistic, but I’ll be grateful for whatever I get,” she told me.

I asked her how she continued on for all those years, how she dealt with a misdiagnosis and living over one hundred eighty months longer than she was expected to. This woman has an intense will to live. If you met her, I dare you to disagree. She told me, “My desire to be a mother longer to my daughter is really the main reason that I feel I’ve been granted this life for so long. And I think we all find one reason or another.”

“You either approach this as conquerable, or you sob. You feel sorry for yourself and say ‘why me?’. Which is natural. Like I say, you’re allowed to go to the bathtub and the shower and cry and feel sorry for yourself. But also, you must step out of that bathtub and put your big girl pants on and deal with it. Because it’s yours. It is up to you to take care of it.”

This might just be the strongest bitch I’ve ever known.

Originally published at www.lifesciencenexus.com.

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