metastatic breast cancer

The Rabbit Hole....Ending my hiatus & living with Stage IV TNBC

Where did I go? Why did I stop posting? How have I been?

Wow, it’s been over two years since I last posted. Abandoning, suspending, walking away from what I loved to do. The decision was instant, a snap judgement. It was like repurposing power, using what I had in my reserves to focus less on the greater good and simple put, focusing every single ounce of strength, courage, experience, hope and prayer on one thing. Survival.

  1. So what happened? Why did you stop posting?

    In April of 2017 I was diagnosed with Stage IV Triple Negative Breast Cancer. For those of you who don’t know Triple Negative Breast Cancer originates in the breast and is not express the genes for estrogen receptor (ER), progesterone receptor (PR) or HER2/neu. This in turn makes Triple Negative Breast Cancer/TNBC hard to treat.

  2. What was it like for you when you where giving the Stage IV Metastatic TNBC diagnosis?

    It was crushing. To be told that your life expectancy was shortened. It was numbing. I remember being ice cold emotionally when the diagnosis was confirmed. No crying, no tears, nothing. I was ice cold. There was not room for a single inch of emotion, I had already decided before walking in to meet with my original oncologist that no matter what she told me, it was not going to break me. I won’t go into to all the details now (as I’’m working on a detailed book) but let’s just say I summoned up a full blockade response. Yeah, you know the one. For every time you've been knocked down, slighted, punched, kicked, disrespected, we gain just a little bit of resilience each time we get up. So my lifetime of experiences prepared me, and like a bull seeing red, I pushed thru the visit, trampling and suppressing any belief that I was not going to make it.

  3. So what did you do next?

    I went home and laid down for a week. My body was very tired and I was trying to process everything I had heard. You see, It was not just the confirmation that I was now Stage IV MTNBC that I was dealing with. I was dealing with the loads of research and tons of new information that I was ingesting daily, a habit I had picked up when I was told something might be wrong in March of 2017. When my original oncologist revealed that some activity in my lungs and spine had shown up on a PET Scan, my immediate reaction was to start ingesting research. I spent at least 5-8 hours a day (often in the middle of the night) just reading and educating myself on Metastatic Triple Negative Breast Cancer, what it meant, who was doing research, what kind research they were doing and what were the results. I poured over white papers, spent hours in chat rooms that doctors frequent, read immense amounts of research articles, watched videos and wrote down notes, questions and scenarios.

  4. What did I learn?

    That TNBC is not just one disease. Nope. That’s right, the most important thing that I learned from all that research in March of 2017 was that TNBC was heterogeneous, meaning that TNBC was not uniform and it did not fit into one tight, structured simple classification. In other words TNBC consists of subsets, that are grouped together and given the title of TNBC. Yup. It was shocking, because no one ever discussed with me the fact that I had been diagnosed with a disease that had subtypes. Back in 2015 when I was diagnosed Stage I TNBC, I was under the assumption that it was a rare, more aggressive form of breast cancer, but I did not know that even with that diagnosis, that there were differences that could effect how I would respond to standard of care chemotherapy. So, once I was diagnosed metastatic the big question became, which subset did I fall under and how were researcher’s addressing it.

  5. What conclusion did you come to after doing all the research.

    Well, quite frankly I knew the only option was building a survival action plan based solely off of scientific facts that pertained specifically to my case, I was seeking Precison Oncology. Precision Oncology is an innovative approach to cancer treatment that ensures your treatment is specifically designed and targeted to your unique form of cancer. So after doing some reading, I just started approaching the oncologist that had done the research. As you guys remember I’ve talked to researchers prior to my Stage IV diagnosis, straight guerrilla style, just showing up without an appointment and making myself at home. Well with my Stage IV diagnosis my approach was a little more clinical. I approached the oncologist/researchers and asked questions about what they were working on (I actually made appointments!), why they were working on it, what was the end result and how if any could it be applied to my particular case. Eventually after chatting with one very smart clinical research oncologist I learned that: I had a ton of tumor lymphocytes (white blood cells that have left the bloodstream and migrated towards the tumor). In other words, these TIL’s had recognized the nasty ass cancer in my body, had mobilized together to fight but did not properly kill off the tumor cells. This research oncologist indicated that I should have done a lot better when I was being treated for Stage I TNBC on chemotherapy because of my abundance of TIL’s. The research oncologist indicated that I should get genomic testing (when your tumor is specifically tested for genetic mutations) and think about trying to get into a clinical trial that was targeting a particular mutation (if I had one).

  6. What action did I take after to address my treatment plan after being diagnosed with Stage IV TNBC?

    I went back to my original oncologist to discuss my options. In the four weeks from PET Scan to biopsy to results I had become a different person. No longer was I satisfied with having my oncologist organize my treatment plan without having a say in what direction I would be going. I came with a specific needs request based off of conversations I had had with the research oncologist. I wanted my treatment plan to be factual and science based with no decisions based off emotion or what any other patients were doing. I needed these decisions to be about me, my case and very specific. Sadly, my original oncologist did not agree that I should have genomic testing, instead countering that I should exhaust all “standard of care”. Mmmm. When I pushed back and ask why, my original oncologist indicated that “other patients with MTNBC were doing well with parp inhibitors”. I pushed back again and asked how this decision was being made “based on what!” Again my original oncologist, pigeoned holed my ideas of genomic testing and my attempts to rationalize trying for admittance into a clinical trial. “It could take months” was my original oncologist response “And the cancer could keep growing, while you wait to get into a trial”. Frustrated but armed with information, I pushed back and indicated that I was only going to build an actionable treatment plan based off science, not generalizations, specific to my needs. At that point, after hearing and feeling my original oncologist resistance I knew it was time to end our relationship and part ways. It was one of the most brutal, sad and frustrating days of my life, but it was also very liberating. I knew that deep down inside I had changed for the better and instead of being an alarmist and conformist, I was walking a new path, based off of science. I went on to receive my results of genomic testing via Foundation Medicine, grabbed a copy of my biopsy report, ordered cd’s of my scans, arranged my huge medical report in a binder and hit the road. I was on a quest to get into a clinical trial.

  7. Where did the information/Precision Oncology lead you?

    At the time there were not a ton of clinical trial navigators (that I knew of). I spent lots of time on the Clinical site hunting for a trial. Luckily today patients have the ability to choose from an array of navigational tools that can assist in the search for a clinical trial some of which include: SHARE’s Metastatic Breast Cancer Trial Search, Cancer Research Institute’s Clinical Trial Finder, National Cancer Institute’s Clinical Trial Database. These represent just a few and there are a lot of other clinical trial navigators out there. Thank goodness, because the task can be daunting. Eventually I narrowed down my choices to include trials that were focusing on TNBC patients, were only treating metastatic cancer with immunotherapy (only no combo with chemo) and trials that had two or more immunotherapies combined for treatment (as I had been told by a third research oncologist that some patients had a better chance of response when immunotherapy is given in pairs and not as a single agent (mono therapy). Eventually I started to look at individual hospital web sites. Even then the hospital had to be a teaching or research institution, because I knew that the access to clinical trials was more extensive at one of these hospitals. Now you all know my personality is a bit of a wild card and I definitely used that to my advantage. After looking over my genomic report from I contacted a Principal Investigator (the research oncologist who runs the trial) to discuss a trial he was running using immunotherapy targeting a PIK3CA mutation. In all honesty I did not have that mutation, but I had one that was in the family, PIK3R1. I figured, it sounded close enough and why not explore the possibility of allowing me into the trial based on that! Well, several says after sending my email, the PI called me back. This was June of 2017. I can still here his deep voice as clear as a sunny day. Not only did he shoot down my theory down (sorry, but clinical trials are a lot more specific than being close enough), but he after my initial let down, he informed me of some life changing information. The PI indicated that a double agent immunotherapy only clinical trial that he was running, was opening up a cohort to include MTNBC patients. The trial had already been running and had been treating Non Small Lung cell and Melanoma cancer patients successfully with this double agent immunotherapy only trial. The PI wanted to know if I was willing give it a try and sign up for the trial, that had not even opened up yet to include MTNBC. It was like Christmas in June! Long story short twelve weeks after getting my diagnosis of Metastatic Triple Negative Breast Cancer I was entered into a double agent immunotherapy only clinical trial.

  8. What kind of immunotherapy were/are you on? What’s it like being on the trial?

    On July 30th 2017, I entered the clinical trial. The trial consists of getting two immunotherapies one experimental and on that’s been on the marker for a while). I receive the agents every 21 days via infusion as an outpatient at the hospital. At the time I was receiving a revamped version of an IL2 agent NKTR - 214 and PD1 Inhibitor. I received both the drugs at the same time and was monitored for side effects (via blood tests, EKG’s). I acquired a new team that includes a Principal Investigator, Research Nurse, Infusion Nurse, Phlebotomist, Physician Assistant, Nutritionist, Massage Therapist, Social Worker, Receptionist and a Customer Service Rep (who tracks my expenditures and makes sure I’m reimbursed for out of pocket expenses while participating in the trial such as food and parking). I have grown very fond of my new team after divorcing my old one. I have even found a new breast oncologist and am slowly building a new treatment relationship. For the first 10 months of the trial I was receiving both agents at the same time. The side effects from the IL2 combo with PD1 were a little rough at the beginning of the trial. Some of which included puffy and peeling skin under my eyes and lips. Extreme fatigue and heartburn. Eventually I started to get really bad arthritic pain that would last 72 hours and then I’d have what I’d call my “Pop Up” and feel better. Most these side effects would last from 48 to 72 hours, After that I was able to move around, go out, spend time with family and enjoy life. My focus was all about survival.

  9. So, what dd the immunotherapy work?

    Yes! In a nutshell eight weeks after starting the trial I received my first CT Scan. The scan revealed that my tumors had decreased by a whopping 72%. That’s right after being diagnosed with Stage IV Triple Negative Breast Cancer in April of 2017, entering a trial in July of 2017 it was revealed in September 2017 that the tumors in my left lung, ribs, spine and pelvis had decreased. By May of 2018 the tumors in my lung, spine and ribs had disappeared. I have one small “spot” of left on my pelvic bone. That spot has been stable for well over a year now. My oncologist has indicated it might be a hole that was left over after tumor reduction. That spot is the only thing that keeps me form being considered a complete responder (as I am officially known as a partial responder)! The feat is nothing short of amazing that I have had such a durable measurable response for the length of time I have had. Especially since I’ve only applied for and been on only one clinical trial. Due to my success/durable response the Principal Investigator and I felt I had received the maximum clinical benefit from the trial drugs, after determining that I had a 100% reduction in the target tumors and I came off the trial after 20.7 months. As of my last scan, things are still the same (quiet) and I have had no tumor progression (as of Sept 2019).

  10. So what’s next.

    Attempting to reclaim my life. It’s been an emotional roller coaster that most can’t understand. I still scour, hunting for research and educating myself on my disease. I answer emails from other patients who have been diagnosed with the disease who have heard about my story and have questions. It’s really the reason why I chose to begin posting again. To pay it forward. In addition I have teamed up with non profit advocacy groups and write, speak and consult about my experience from. a patient perspective. In addition, I’m in the process of writing a book. Without information from other patients sharing their individual experiences one what to expect when attempting to get into a clinical trial or what it’s like being on one, the journey would have been much more difficult. It’s not easy but hearing the stories motivated me and I figured if they could be brave enough to do, so could I. I read stories of patients effected from all types of cancers who shared their experiences around clinical trials, the good and the bad and it fueled my search, an quest to live and not succumb to this deadly disease. I’m one of the lucky 4% of breast cancer patients worldwide who respond to immunotherapy (only no chemo, radiation or targeted therapy combo). The amount of work and luck it took to get to this point is astounding. To finally start sharing my crazy story with others is therapeutic and may possibly inspire someone else to take a leap of faith, when faced with gigantic obstacles. So for every underdog out their facing a cancer diagnosis, I’ve begun to share my story, in the hopes that I can educate and keep motivate someone to keep going, no matter what the cost. So, Im back to updating my blog on useful information that may shed a light on services that all make up this community of cancer.