Recently I have been faced with many hard decisions that needed addressed. Do I do my last round of chemo? Do I then go on a maintenance therapy or do I have my stem cells harvested for transplant? Do I do nothing more at this time?
I spent most of last week fairly certain that I would not do my last round of chemo based on my recent recovery. The thought of not being able to survive another round was very real to me. However, by the end of the week I started to recover and my mindset seemed more on track with finishing.
I am also faced with the decision of what to do after treatment is complete. In the normal course of treating mantel cell, the immunotherapy drug Rituximab is given every other month for one to three years, or, an auto stem cell transplant is performed immediately following chemo. In my case, however, my doctors call me an anomaly in that with the trial I did there is no data for them to give recommendations as to the best course. And while a Stem Cell Transplant sounds like a good option, in reality it may only give me some extra months of remission yet has not definitively been proven to lengthen life.
Lastly, I have learned that long term use of Rituximab, possibly in a maintenance setting, comes with the potential side effect of respiratory complications.
At MD Anderson through their trial, they do nothing following the four cycles of chemotherapy. MD Anderson, of course, is looking for data. They want to know how many patients stay in remission and for how long. I am no longer comfortable with this plan. I realize that I bought into this initially and it was, in my opinion, the best decision I could have made at the time, but my mind has changed. Things look different now and I don’t want to be a lab rat for data collection nor am I content just waiting to relapse.
I have asked many, consulted with several and have researched as much as I can and still have no definitive answers. I only have an educated guess and my gut. At this time, I need to focus on me and that means I need a break. Enough is enough.
It seems that I could treat every day and simply endure life, or I can finish this treatment and start living again. There are no absolutes. No guarantees. There is no medical journal to consult. This is up to me with the advice of my team to figure out and decide.
I have decided to go forward with my last round of chemo next week. I have chosen not to have an auto stem cell transplant and will follow up my treatment with maintenance Rituximab.
I have no idea if my decisions are correct, I have no way of knowing how long I will remain in remission and I have no clue how to live my life without the constant worry of when the shoe will drop and this beast will come back. What I do know is how grateful I am for waking up each day and for being able to spend time with my family and friends. There is a rainbow of hope for me knowing that my year of treatment is nearing an end. Life is good, in fact it is better than good, it is fantastic. I am comfortable in my decision. It is, after all, my life, my body, my choice.