Published 24 July 2016

Final leg of the procedure (Day +10)

Many of us managed to sing right through neutropenia. Yesterday, Dr. Ruiz-Argüelles told me that my white blood cell count was 26,000. A normal count is 12,000. At first, I thought he had made an error through some English-Spanish miscommunication, but then in the clinic lobby, I found someone else from Australia who had reached 42,000.Many of us managed to sing right through neutropenia. Yesterday, Dr. Ruiz-Argüelles told me that my white blood cell count was 26,000. A normal count is 12,000. At first, I thought he had made an error through some English-Spanish miscommunication, but then in the clinic lobby, I found someone else from Australia who had reached 42,000.

So, later today, we are onto our final leg of the treatment, an infusion of rituximab (Rituxan, 350mg) to kill off any autoimmune-active B-cells (CD20 B-cells) which may have survived the chemotherapy. After all, this was a non-myeloablative procedure, so in exchange for some important, decreased risk, we didn’t completely deplete the immune system. In fact, the clinic recommends that we receive six total over the next year (five additional 100mg rituximab infusions, bi-monthly). Because of cost, I’ll probably return to Mexico for the followup treatments.*

Except for the hair loss, my body seems to have returned to how I was before treatment. Although during chemotherapy, my MS pain levels had dropped significantly, they seem to have unfortunately returned to pre-procedural levels. That’s kind of a bummer. But during my meeting with the doctor yesterday, he said that although some people start to notice improvements right away, most will not until 12-18 months after the procedure.

If you search for them, there are several videos of HSCT veterans showing improvement right around Day +9 to +11: people with joyous tears in their eyes are suddenly walking better. I’ll need to be more patient. Right now, my right calf nerve is painfully burning like it’s on fire.

Technically, I am free to return home tomorrow, but our flight doesn’t leave until Saturday morning. We have accommodations here until then, and we’ll probably forego the couple hundred bucks it will cost to change our tickets, so we’ll probably just leave as originally scheduled.

This four-week journey is coming to a close. It’s a little surreal to think I actually left the country and completed this thing! I suspect it will be a monumental cornerstone in my life.

* 100mg rituximab infusions at Clínica Ruiz cost roughly $500, which is probably 30 times less than getting one in the USA. According to my regular neurologist, my insurance company is unlikely to pay for them, so I’ll probably return to Mexico.

Important Timeframes

  • 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

Disclaimer

I am not a doctor. I am a scientist (engineer) who has had MS since March 2013.

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