Scheduling Rituxan Maintenance

So I finally got in to see Dr. Vempaty yesterday, after having had our February appointment cancelled when she fell ill.  I knew we would be discussing the next steps for Rituxan maintenance.  From what she had told me before, I was aware of my two options: 

A. a series of four infusions, each one week a part (like I had last fall), every six months, or 

B. one infusion every three months.  

I was hoping that we could go with option B, as it seemed less intrusive, and more manageable, plus it would mean putting half as many infusions of this drug in my body each year.  Luckily, this was indeed the course she recommended.  We planned to schedule my first maintenance infusion on Friday, March 25th, as that was an easy day for me to miss at school, and then I would have the weekend to recover so I could return to work the following Monday.  We would then plan to schedule the next infusion 12 weeks later in June.  Dr. V said we will schedule an MRI six months after my last one, which would be in the first week of August, and we would meet the following week to discuss the results.

I learned a couple of interesting things in this visit.  I was somewhat surprised that she has not done Rituxan maintenance treatment on a patient with my type of "marginal zone" lymphoma, because it is so rare and she has never had a patient with this before.  However, she has done maintenance with patients who have had follicular lymphoma, which is a very similar type of low-grade b-cell lymphoma, and given I already responded so well to the Rituxan, she believes that we will continue to see good results.  She also told me that there is a possibility that the masses (tumors) which showed up in my MRI as unchanged since November, may possibly be scar tissue, and not necessarily active cancer cells.  However, there is no way to tell unless we do another biopsy, which she didn't recommend (phew!)

As you would imagine, a visit to the oncologist is never pleasant, especially when I ask the "what if" questions that I know I don't want to hear the answers to, but I can't help myself:

Q:"What are the risks for continued Rituxan maintenance?"

A:"Possible side effects include headaches (which I already have), immunosuppression, as well as a VERY unlikely possibility of contracting a disease known as leukoencephalopathy, which is potentially fatal, where the brain basically degenerates.  None of us here have ever seen it in any of our patients."

Q:"What if the Rituxan stops working?"

A:"We escalate treatment, and try Rituxan combined with harsher chemo drugs."

Q:"Is it possible the cancer will spread?"

A:"Yes."

Q:"Where is it likely to go?"

A:"The bone marrow, the lungs, the GI tract."

All of this is sobering, and I hate being reminded of my vulnerability during these appointments.  However, I am not going to dwell on these possibilities.  I am on a very positive treatment course.  On a day to day basis, this disease doesn't affect me, and for the most part I forget I even have cancer.  I am not experiencing uncomfortable symptoms.  I am feeling very healthy overall, and living my life as normal: going to work each day, taking care of my family, and spending as much time with friends and loved ones as possible.  I am trying to keep busy and fill my time with activities I love, and especially take advantage of travel opportunities.  Ewan and I just recently enjoyed a wonderful week visiting a multitude of aunts, uncles, and cousins from my dad's side of the family in Jacksonville, Florida (see pictures below).  We are also planning a spring trip to Europe to sightsee in Spain and London, and visit Gavin's family in Scotland, as well as trying to decide on a summer vacation destination.  My future is bright, and I am focusing on loving the life I live, and living the life I love!

At the town center with my Uncle Ramzi, my dad's brother.

At the Jacksonville zoo with a new friend.