Hi everyone. I hope you all are having a great Thanksgiving weekend.
A few people asked in response to my last post what specifically was the conflicting information I got about my decision to stop or continue treatment. I wanted to take this opportunity to explain a little more about the science behind my illness and treatment.
A short answer to the question about the conflicting information: essentially, my Stanford oncologist first told me I could consider stopping treatment early because I was on a longer and harder regimen than is what typically done at Stanford. So I decided, after careful consideration, to stop treatment. Then, when I went in for my next appointment, she backtracked and said if I could do more I should, since I was originally put on a longer protocol.
So, neither recommendation was necessarily evidence-based, and it perhaps could have been communicated in a better way, since telling me to do more chemo after I had already decided to stop felt kind of like being punched in the face. Anyway, I wanted to make an evidence-based decision, so I since have done a lot of research and reading of the literature (with the help of my physician mom), and have come to a final decision.
First, a little background. My diagnosis is Acute Lymphoblastic T-Cell Lymphoma. I do not have leukemia, since my bone marrow was never involved. I presented with a mediastinal (chest) mass, representing a single premature T-cell of my thymus that mutated into a raging cancer clone of cells, and, unable to stop its own growth, took over and grew into a massive tumor. I was told the entire tumor probably grew in only six weeks. It’s that aggressive.
I have a good prognosis. While the average survival for my cancer is somewhere around 50-60%, this number includes old people, people who died from complications of the chemo immediately, people whose tumors never responded to treatment, etc. When you parse out the people like me, the survival looks closer to 80-90%. My good prognostic factors include:
- My age
- That I did not have bone marrow involvement at diagnosis
- That I did not have abnormal white blood cells in my blood at diagnosis
- That I do not have the Philadelphia chromosome (a fusion of two genes that leads to abnormal cell activity)
- That I went into remission quickly (called rapid early remission)
- That I’ve tolerated the chemo as well as I have up to this point
- That I have not relapsed up to this point
So, yay me.
As time passed from my last dose of intensive chemo in October, I started to feel much better, and it started to feel possible I could handle more. Part of me felt that if I could handle it, I should do it. I want to feel like I did everything I could.
On the other hand, chemotherapy can be really toxic, some drugs more so than others. Some of the drugs I’m taking have the potential to cause long-term sequelae. So, I need to balance the possible benefit—that more chemo will lead to greater survival—with the possible risk of long-term damage to my body.
I spoke to both my Stanford and UCLA oncologists about this, and neither could tell me with certainty how much the extra chemo would impact my survival. Maybe I’d be torturing myself for a 1% greater chance at survival, maybe 5%, maybe 10% . . . there is no research looking at the difference. And really, I’m a person, not a statistic. Either I’m cured or I’m not.
I did more research with my mom on the specific chemotherapy drugs I would be getting in these last eight weeks. Some are worse than others. Some would just be shitty while I was taking them (asparaginase, ARA-C, thioguanine, vincristine), while others could cause significant long-term problems (doxyrubicin, cytoxin).
So, I have decided I will do the final eight weeks of intensive chemotherapy, minus the two most toxic drugs, doxyrubicin (which can cause cardiotoxicity) and cytoxin (which can cause ovarian failure). I’ll start this coming week and finish somewhere around the end of January or beginning of February, depending on if I have any side effects that prolong the treatment.
While the thought of doing more intensive chemo kind of makes me want to shoot myself, this feels like a good decision. I want to live. I don’t want to have any regrets that I didn’t do everything I could.