Rituxan. Prior to my transplant I was on it for a almost two years - it was also used during my transplant. Rituxan is a monoclonal antibody. In layman's terms, it is a drug that targets and destroys a specific type of antibody, in Rituxans case, the protein CD20 which is found on immature B-Cells. B-Cells are an important part of the immune system. Monoclonal antibodies are a huge step in medical history because they have the capability to destroy targeted malignant or malfunctioning cells without destroying all other rapidly producing cells. Meaning, it doesn't have all the horrid side effects of cytotoxic agents (aka chemotherapy) but has a similar, hard hitting function. It is frequently used in cancer and certain autoimmune diseases for this reason.
My second round of Rituxan to combat the autoGVHD went smoothly. I am one of the lucky patients who really doesn't experience much side effects from the drug. Besides a couple days of diarrhea, exhaustion, and sore muscles - I do just fine. The infusion itself is about 5 hours and is accompanied by steroids, Benadryl, and lots of saline. Rituxan is given via two infusions every 6 months. Now that I have completed my second round, it's time to just sit back and wait for results. My physicians hope is that the drug will reign in the autoGVHD reaction before it gets too out of hand, or before it reactivates my immune system, causing a relapse post HSCT.
While we await to see results from the drug my team decided to get some baseline pulmonary function tests. Unfortunately, my PFTs have slightly declined since my last assessment in May. My spirometry dropped by 5%, my plethysmography dropped by 11%, and my DLCO dropped by 16%. In the PFT world those are noticeable drops, but also drops that could be within the "margin of error," which is around 10%. Is it a skewed result, is it the autoGVHD in my lungs, or is this signs of a relapse? At this point, my local team is already itching to put me back on low dose oral chemotherapy and steroids. I essentially refused a new treatment plan until I could consult with my specialist - I trust him to make the best, most informed decision out of all my care providers as he has the most knowledge of post transplant patients. I saw him on Wednesday. He spent a good amount of time talking over my symptoms, clinical findings, test results, and general quality of physical and emotional health. Thankfully, he still does not believe my current physical state indicates a relapse post HSCT. However, the autoGVHD is definitely wreaking havoc on much of my body still. Since the Rituxan will take a month or so to really generate the results we need he decided to start me on a low dose biologic agent that will more immediately reduce some of the inflammation in my body. We will also be upping my vasodilators as my Raynauds has pretty seriously increased since all this began. Honestly, his biggest concern was my lack of sleep. The body cannot properly function without sleep. Since September I can count on one hand the number of decent night sleeps I have had. Even with traditional sleeping medication, I just cannot stay asleep. He has ordered a sleep study to asses exactly what's going on. We were hoping the poor sleep cycles were related to my mental health, but even after beginning treatment for my anxiety, the poor sleeping habits have remained.
Mental health. Something I do not often touch on. Not because I am ashamed, not because it is less important, but simply, because mental ailments absolutely, unequivocally terrify me. A condition of the body seems so much less frightening than losing... yourself. As I am sure you are all aware after reading my last blog post, I was struggling. Not only physically, but mentally. I found myself downright riddled with anxiety, PTSD, depression, and panic attacks. Completely incapacitated by cycling thoughts, frustration, and emotional frailty. This wasn't just sadness and worry - this was an all encompassing black pit I could not escape - I felt trapped in my own brain. Luckily, I have a team dedicated not only my physical, but mental health as well. We began anti-depressants and therapy immediately. After some trial and error, we found a drug that significantly improved my quality of life; Cymbalta. I went from having panic attacks at the grocery store and crippling anxiety seemingly every waking moment - to maybe once every week or two. It's incredible to feel such tangible relief. If you are struggling, please, don't be embarrassed to find help. You are not weak. You are not flawed or inadequate. You are dealing with an ailment that can be significantly improved with proper care. Thank you to my friends and family who helped me through a very rough few weeks.
A full work up, including a high resolution CT of the lungs, a repeat PFT, blood tests, and an echocardiogram are all scheduled for early next month. This will give the Rituxan a bit of time to kick in before we can truly assess how things are going. The good news is, my rashes have significantly decreased post another course of my least favorite drug; Prednisone. I now only have a few dry remnant patches left where the more severe rashes were. So it looks like things are headed in the right direction - hopefully, this will be far behind me soon.
