Making Good Progress (Week +12)
Last week I had my first followup infusion of rituximab, this time the actual brand name, Rituxan. Since before I left for Mexico, I had been stressing about how I was going to do my five followups.
Obviously, it’s quite inconvenient and expensive to have to return to the southern part of Mexico bimonthly, especially considering my restrictive diet and special sanitary needs. Furthermore, I would need someone to accompany me for at least this first one. It was such a relief to have found a local doctor and facility to administer the drug. Cash on the barrelhead, the total was $1830. Excluding travel and lodging costs (a two night stay), the Mexico price was last estimated at about $500. By next time, my request for financial aid directly from Genentech may have been processed for some sort of discount, considering my insurance company has declined to pay.
I’ve spoken with another patient, who’s in Mexico right now doing her treatment. She lives in Canada, but she’s also coming to Santa Barbara to do her rituximab followups. That’s how lucky I am. Two girls from the UK, who were in my group in Mexico, were able to do their treatments locally, there. But in the US, there’s a problem finding a qualified hematologist who’s willing and able honor Dr. Ruíz's discharge instructions. US insurance certainly wont.
Let me interrupt this train of thought to mention that Monday and Tuesday of last week were pretty much pain-free. Yes, pretty well pain free. I haven’t experienced that much relief for more that two full years. Wednesday, the day of my infusion, did not abide, however. The rollercoaster ride continues. Oh, and I've finally started to gain back missed weight. I'm up ten pounds since before treatment, still 17 pounds below my normal weight, but I no longer look sick when I see myself in a mirror.
The Cancer Center of Santa Barbara has a nice infusion room (i.e. chemo room), which is very generously staffed. To address the harsh side effects rituximab is capable of inflicting, they started my treatment orally with two Tylenol, then with an infusion drip, a large dose of Benadryl. I felt the Benedryl within seconds; wow, that was a big dose. They started the rituximab very slowly, then sped it up after my body had a chance to acclimate to the “taste.” My first dose two months ago was almost four times as large, so this was bound to be easier, and it was.
The hardest thing about the procedure was enduring the side effect-preventing medication. Ironic. Maybe the Rituxan contributed to the drowsiness, but I was knocked out for three days, continually chasing my normal sleep cycles. I caught up by the weekend and slowly began shedding the pain, once again. Today is Monday, and I’ve been pretty well pain-free for most of today, and that includes doing an hour of physical therapy and 30 minutes of driving. I can get used to this :)
My PT worked on my left shoulder today and confirmed that there’s some pretty significant atrophy there. He’s previously identified atrophy in my left hamstring and calf. If the pain relief continues to sustain, you can bet your ass that I’m going to work hard to rebuild that muscle mass. My left arm has had control return over the last few weeks, and I put up a pull-up bar in my house that I will work with, the best I’m able.
While my waking seem to have slightly improved a few weeks ago, it seems to be back to about par (as right before treatment). The muscles are weak and control is still sub-par in the hip, knee, and ankle. I need to be patient.
On September 5th, I will have made it three months, halfway through my strict sanitization period. When I hit six months, I’m finally able to eat restaurant food and fresh foods again. I can eat probiotoics and live, cultured food, to work on my gut dysbiosis. I can even eat sushi. What a relief that will be. My biggest sanity challenge right now is having to not only do all my own grocery shopping but to make all my own meals. Three per day, seven days per week. It’s bad enough not being able to order a pizza because of my gluten restriction, but the convenience factor of fast food, even healthy fast food, has greatly been missed. Stay the course. If things continue to get better on the same trajectory, it will be worth it!
- My Stem Cell Transplant Date: June 5th, 2016
- Treatment duration: 4 weeks
- Typical onset of disability reversal: +9 months
- Typical complete recovery from procedure: +1 to +2 years
- Typical maximum reversal of disability: +2 years
I am not a doctor. I am a scientist (engineer) who has had MS since March 2013.
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