Maintenance Tx for indolent, NHL

lacorota

I completed induction Tx for indolent, NHL 3B, in December, 2015. My last scan, a month ago, was clean. The suggested maintenance Tx following induction was continuing with Rituxan only, 1 X every 2 months. But I had to quit, after 2 Tx, because the fatigue, mostly, was life-changing, epic-class.

The best analogy I could offer was, I'd wake up each day felling okay, and have the will to go about a day completing various garden-variety tasks commensurate with a normal household. Usually, within an hour, or two, of getting groceries, a short walk, or perhaps house cleaning, the fatigue was precipitous, and would wash over me within minutes. Pre-NHL, I'd been very active with long distance cycling, hiking, and swimming.

I told my oncologist that the fatigue was sudden, and it felt similar to what I felt like following a 100 mile bike ride at a decent pace. He seemed puzzled every time I complained, and dismissed my complaints with a tone arrogance. His typical response was "I've never had any of my patients complain of either fatigue, or joint pain from maintenance Rituxan Tx." My perception was I must be mistaken, then. So I began systematically eliminating every medication I'd ever been prescribed to see which might be the source. The result after deleting one-after-another medication from my arsenal, the condition continued  with only Rituxan.

My oncologist kept telling me this was something my PCP needed to address. After galleries of blood work, one test determined I had the profile for hypogammaglobulinemia, a condition common to Rituxan. As well, my PCP's data sources cited up to 30% of those receiving post-induction, maintenance  Rituxan reported "extreme fatigue." After searching for, reviewing, and digesting as many credible, peer-reviewed, articles on Rixan as I could, I decided the empirical data at minimum suggests that overall survival wasn't significantly improved, and it was relatively ambiguous as to improvements in progression-free survival. 

So I was at one of those many informed, decision-making crossroads cancer patients and  survivors frequently come upon. Id hoped, perhaps, that there might be something to treat the fatigue relatively c/t Rituxan Tx. But fatigue treatment  wasn't an option without first acknowledging the possibility by the oncologist. 

So I concluded my maintenance Rituxan Tx following 2 Tx sessions. I had to weigh quality of life vs. just lying in bed fatigued most of a day, with a beating heart, and pumping lungs. Naturally, making such decisions and assuming the risks leaves one with the uncertainties. Are those cells in there doing push-ups, waiting for the first opportunity to multiply again? 

So I come here to see if I'm the first and only person who ever had issues with maintenance Rituxan Tx and quit? I decided to change my cancer-care venue closer to home, and get a second opinion. 

Has anyone quit Rituxan for similar reasons, and did their doctor at least acknowledge the possibility of fatigue? If so, what is the gold-standard for treating über-fatigue if Im hopefully not dismissed by my second-opinion Doctor?

 

Phil