So I’m not your typical patient. I don’t blindly do what doctors recommend unless I have spent time learning and researching. Hence, my recent decision (which I still stand firm on) to not take the recommended Tamoxifen as part of the “protocol” for breast cancer treatment. I have learned to be a professional patient through my years of experience living with Multiple Sclerosis.
I happen to have a unique relationship with my neurologist, in that we discuss in detail the treatment options that are being created and tested in clinical trials. We always have. I appreciate that he is always willing to answer my questions honestly, and he fully supported my decision to participate in the clinical trial for what later became known in the MS community as Gilenya. He understands that I am proactive, and that I can intelligently decipher data to reflect the truth, not just the numbers. It’s a relationship we have built over the last almost 13 of my 14 years living with MS, and I trust this man implicitly as the “captain” of my healthcare team.
While my MRIs have been “stable”, this only means that the changes are not yet detectable, and I have had two major relapses in the last four years, one of which was most definitely a brain stem occurrence, which is generally difficult to read on MRI anyway. I always use the same facility for my MRIs, for the sake of comparison, but they don’t use the most powerful machines available. But that part doesn’t even matter because regardless of what the MRI says, clinically, (while not horrible) I am not doing as well as I was several years ago, despite me working harder and harder on the things I can do to help myself.
For years now, I have been watching a new MS treatment (Ocrevus) through development and clinical trials. I do things like set up google alerts so that any time the drug is mentioned, I get a link to the article sent to me. I then read and research more on Google Scholar. I combine data with testimonials, and of course discuss these things with my neurologist every chance I can get. On paper, it seemed like this was going to be a perfect fit for me. The efficacy resulted in NEDA (no evidence of disease activity, something we all strive for since there is no cure) with a very impressive safety profile. Initially, it was due to be approved in December of 2016, but due to “marketing issues”, the date was pushed to March of 2017.
A lot of things happened in that time. Like breast cancer. When I found out I didn’t need chemotherapy and that radiation would do the trick, I was so incredibly relieved, not just for the obvious reasons, but also for the fact that chemo would have excluded me as a candidate for Ocrevus. Additionally, however, it was discovered that in a trial comparing Ocrevus to an existing MS treatment (Rebif), there were six cases of breast cancer in the Ocrevus arm, and none in the Rebif arm. As a result, the packaging insert contains a warning about possible malignancies that could not be explained in the trial. The insert states that women should be screened regularly for breast cancer, and I thought, “Well damn! No one is going to be screened more regularly than I am from here on out,” convinced that I was still a candidate.
Last week I had the appointment that my neurologist and I had carefully scheduled, hoping that by the date chosen, all the red tape would be sorted out, both by insurance companies as well as by the hospital’s review board, which it has been. But when he walked in the room, I knew from his face that the conversation I had feared was about to happen. He looked at me and he told me that we were going to have a very difficult conversation, and one he had been dreading for some time. The bottom line is that my neurologist is not comfortable putting me on a treatment that caused malignancies when I have just finished treatment for breast cancer. This was a short study, just two years, and that’s a pretty high number of breast cancer diagnoses in a short amount of time. He also admittedly said that because the study was short, he fears longer term effects which are not yet available until extension trials produce more data. He said he would do it but he would worry about me all the time. And to be perfectly honest, if this guy, who has had no motive other than my health for 13 years now, is not comfortable, then neither am I. That’s how much I respect the relationship we have built, even though I was (and still am) utterly devastated. My dreams of NEDA came crashing down, and I found myself crying buckets of tears of disappointment.
Instead of dwelling on that, because he’s not all that comfortable with tears, he told me about another treatment in development that he likes very much, probably because he knew I’d write it down and do the same due diligence I always have. When he left the room, he acknowledged that my reaction was better than he had anticipated, and I told him that’s great, but I’m just going to sit in here and cry a little more before I come out of the exam room. I was mostly joking but I did my share of shedding tears. I had placed all of my energy on this and for a brief minute, very out of character for me, asked why I had to get damn breast cancer. But only for a minute because that’s not me. I moved on. Reality is what it is, and I am grateful for stable MRIs even if clinically I’m not as stable as the MRI reads. When I finally emerged from the exam room, the nurses started in, joking with my neuro saying things like, “Why did you make Rennie cry?”. It’s just one of the many reasons why this is my chosen team to manage my illness.
When I left the MS Center, I felt lonely, afraid, and pissed off that breast cancer robbed me of this dream I have been chasing for so long. At that moment, it didn’t matter how many people in my life make me complete and happy every single day. I chose to give myself a very brief pity party, which was pretty easy since Bruce was away, and my friends weren’t around. I never overstay my welcome at these parties, but I’d be lying if I said I never threw them. Being human means that we experience all of our emotions, good, bad, and ugly. And believe me, I am an ugly cryer! So I did a little wallowing, and I came out the other side with more perspective and more certainty that the only predictable part about MS is its crazy unpredictability.
Although I am not a candidate for Ocrevus (sadly), I applaud the fact other patients are benefitting from it, because our options as MS patients are so very limited. In fact, this is the first treatment that is approved to treat progressive forms of Multiple Sclerosis, which definitely makes me happy when I look at the big picture. So instead of focusing on myself, I simply turned my focus to the greater good of it all. Scientists are making great strides all the time, and while there is no cure, there are new treatments in development all the time, and maybe the next one will work for me.
In the meantime, I remain committed to my wellness, both inside and outside. I nourish my spirit and my soul as well as my body, because that’s the one thing that I have control over on this crazy journey. Like I have said many times in the past, this is not how I envisioned my journey, but it’s mine to walk, and I choose to do so with a smile on my face, love in my heart, and a glass of lemonade, half full (of course), in my hand (even if it is a “sippy cup”).
Whether it’s hot coffee…
…or a cool beverage, I always drink from a “sippy cup”. I drop things way to easily and I trip over nothing, so this is our accommodation for me not spilling everything everywhere.