Dec 26, 2008 - 6:11 pm
First and foremost, happy holidays to all!
I wanted to share some information with anyone who may be diagnosed with Mediastinal Large B-Cell Lymphoma. I was diagnosed back in April and underwent 6 cycles of R-CHOP. My first medical oncologist was holding off on referring me to a radiation oncologist, up until our last appointment. She was resigning and felt I should explore this option, since she would no longer be my oncologist.
Boy, to look back on the chain of events and share my story...I sure hope but one person benefits from this.
At first I was upset, because I felt we had "lost time". My husband and I were nervous, but we marched forward, right into the first doctor's office. She was awful...tapping her foot, impatient, didn't give eye contact...I just knew in my gut she was not the radiation oncologist for me, to evaluate my case. So I went through the system and got a second opinion...
It took a few weeks to get an appointment, but she was highly recommended and the top in her field. She was-- is-- AMAZING. She reviewed all of my history, from the bone marrow biopsy, first CT scan, and subsequent PET scans, bloodwork, etc., met with me for about two hours (1 hour with nurses, 1 full hour with her), and even reviewed my case with her partners and former colleagues at NIH. In the end, she decided not to pursue radiation treatment. This is key and critical, because I feel as though we 6-cycle R-CHOP folks are treading new territory...
According to her, all of the data from years past, recommending radiation treatment right after chemo for this specific lymphoma, were for those folks who received 4 cycles of R-CHOP, not 6. Apparently, the 2 extra cycles of R-CHOP (Rituxan, specifically, since it is targeted therapy for the CD-20 cancer cell) serve the same purpose as radiation would-- to zap away those vacationing CD-20 cells.
So there you have it. I encourage any of you with this type of cancer who responded well to R-CHOP (resolution of tumor early on...mine was gone after 2 cycles) to ask questions and really make sure you need radiation. Don't just get it "because". Explore your options, take the time...work with your doctors. Make the best decision for you. That decision may end up being to get radiation, but in the end you will get it because you are doing what's right for you based on your specific case.
I know the healing journey can be exhausting, especially as we inch our way to the last cycles of treatment. Hang in there...before you know it, you'll be saying that you are in remission!
Peace to all on the healing journey...God Bless!