Three Act Plot

Screen Shot 2019-11-21 at 8.08.13 AMWhen I wrote the last two blog posts my husband, Andy, kept telling me to write the third act to give hope to my readers. He is a writer and a theater buff, so he frequently talks about Three Act Structure. Really, he actually does… He says that everything always goes terribly wrong in the second act and that things resolve in the third act. He wants me to hurry up and write part three since the last two posts felt rather tragic and hopeless. I know we’ll get to the third act but, unfortunately, we have a few more obstacles to deal with in act two. 

So let’s recap where we left off. I was on a chemo regiment that worked wonders-briefly. I had a couple of weeks where I felt great, but then the cancer found a way to progress. The result was fluid build-up in my abdomen. So we spent a couple of weeks controlling the symptoms while we worked to chose the best next line of treatment (my fourth). This involved placing the PleurX catheter back in my abdomen so I can get relief at home. Thank goodness, because when they placed the catheter, they removed a whooping 5.1 LITERS from my abdomen. Now that I can control the fluid, it was time to start a new chemo combo, in hopes that the chemo knocks back the cancer again. 

I met with my oncologist, who had a list of three potential treatments. She wanted to research further and consult a colleague before choosing. On Thursday, November 14th, she had decided on Abraxane/Carboplatin, and I was scheduled to start on Tuesday, November 19th. On November 18th, I received phone calls from the hospital’s pre-auth department, our insurance liaison, and my cancer clinic. Since this chemo combo is not part of the standard of care, my insurance company would not approve the drug combination until their medical review board had a chance to review it. On November 20th, the review board came back with their decision. They would not approve the Abraxane/Carboplin combo but recommended a Carboplatin/Gemitadine drug combo. My oncologist now has the option to request a peer-to-peer review with the medical board to fight for her preferred combo or she can accept their choice. She has decided to fight for Abraxane/Carboplatin. 

We are awaiting the decision now. Waiting, in cancer treatment, is the worst part. Waiting for test results, waiting for decisions, waiting for treatment, waiting for relief. Time is precious to a cancer patient. Time off treatment is terrifying. Fear sets in. Is the cancer running rampant while we delay? That’s what it feels like to me. I’m  uncomfortable now and in pain. Will the new treatment turn that around? I have complete trust in my oncologist, and I’m confident that we’ll get on track with a treatment plan again. It’s just that the waiting stinks!! I’d like to get out of act 2 and get on to a resolution! I know my friends and family can’t wait to read Act Three. 

Triple Negative Shocker

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Only one week after the paracentesis on Halloween, the discomfort was back and I would need another procedure. Apparently, it was a very busy day in the IR, because normally they can schedule me the same day pretty easily. Andy and I spent the day calling all over Aurora to try to an appointment. Meanwhile, I sat home feeling miserable. Finally, they told Andy to send me to the ER, which turned into a five hour ordeal. Waiting, waiting, waiting. Feeling sick and uncomfortable. Finally, I got the procedure done. I knew that it was time to place the PleurX catheter in my abdomen again so I don’t have a repeat of that wasted day. 

Nov 12th I was scheduled to see my oncologist. I knew that the fluid building up was a bad sign, and I had a hard week wrapping my head around the implications. As I mentioned before, my doctor does not have a poker face. Not even slightly. When she walked in the exam room, she had the most distraught expression I’ve ever seen on her. This appointment would not be a good one. 

Here’s what I know now. After the paracentesis, a sample of the fluid was sent to the lab to be evaluated. The cytology shows that my cancer has mutated from ER/PR+Her2- to Triple Negative. Only 10% of Lobular Breast Cancers are Triple Negative, so this is a real shock. Those of you knowledgeable about breast cancer just felt that sucker punch. The rest of you are probably completely confused. In a nutshell, here’s what that actually means. These symbols stand for a breast cancer cell’s hormone receptor status. Positive ER (Estrogen Receptor) and PR (Progesterone Receptor) status simply means that the cancer cells have a protein (receptor) on the surface that binds with estrogen and progesterone, which fuels the cancer’s growth. HER2 is another protein found on cells that help control how cells grow, divide and repair. Positive hormone status causes the cells to divide and grow faster than usual. The good thing about positive status is that many breast cancer treatments are targeted to work directly against these receptors. 

In other words, there are hormone blocking drugs which block the receptors found on the cells, so the cancer can’t continue to feed on estrogen or progesterone. Any one still with me? Due to my previous 100% positive hormone receptor status, I had a number of drugs that could control my cancer. I started off by taking tamoxifen for 4 years. When that stopped working, the cancer spread to my pleural space (around my lungs), I switched to Ibrance/Faslodex. That also was not effective for very long and I had progression to my peritoneal cavity. That’s when we switched to oral chemotherapy. The goal was to stabilize the cancer, and then switch back to a different hormone blocker to maintain stability. But, the recent cytology on the fluid now shows that my cancer cells are no longer hormone receptive positive. That is where the term Triple Negative (ER- PR- HER2-) comes from. The cells are no longer fueled by estrogen or progesterone or HER2. So I will not be able to go back to hormone blockers. 

Another step we took involved further genetic testing. I did a Foundation One test to see if I had any of the genetic mutations that are being targeted in clinic trial treatments. Many of you have heard of the BRCA gene. It was in the news frequently when Angelina Jolie opted for a prophylactic double mastectomy due to the gene. There are other genes that are also important in breast cancer.  A big one for triple negative cancers is PDL1. There is also ERBB2, amongst others. The second hit of bad news was that I don’t have any of the treatable mutations. 

If you’re still with me, what I am trying to tell you is the treatment options that are effective with hormone positive cancers, and genetic mutations are no longer effective against my cancer. A number of future treatment lines I had hoped to try are off the table now. My treatment list is getting short, and for the first time in all of this, I’m scared. I have to remind myself that this is a marathon, not a sprint. This week my doctor is evaluating my options and Tuesday I will start a new chemo cocktail. It will be Carboplatin and Abraxane. I’m hopeful for a good response.