Although harsh drugs and strict diet were successfully supressing my devestating MS relapses, disease progression was quickly deteriorating my ability to walk and slowly deteriorating my ability to think. The logical solution for me was to try HSCT, which is not FDA approved, so I left the country to do it. This website documents my research and journey to effect a cure.
Tomorrow morning, I’ll be headed back to Santa Barbara, CA. I’ll be so happy to be back in my home and hometown. I’ve been here in Puebla, Mexico for four weeks, and I’ve accomplished quite a lot.
For the last day and a half, I’ve been sleeping and sitting on the couch. Recuperation has been good to me. Pain levels are down substantially from where they were following my last infusion. I’m confident that I can keep them low during my travels tomorrow.
Navigating airports, customs and immigration should be easy as the United representative pushes me through in a wheelchair. A bald man in a wheelchair, wearing a face mask is warning sign that will keep people away. It will also garner some odd looks.
As a “thank you” gift to Clínica Ruíz, I left them with a copy of the chart that I created while I was here. They said they will hand it out to the next incoming group of patients, and Dr. Ruíz said that he will use it in his presentations. The chart is designed so people can easily visualize and make sense of this process.
This gift is also my contribution to George Goss and all the helpful people in the closed Facebook group, Mexico HSCT for MS & Autoimmune Diseases. There are so many great people in that group and others like it, who selflessly answer questions to guide people like me through these trebled waters. Our own doctors don’t know much, if anything, about HSCT for MS, so we have to learn it all ourselves if we are going to kick MS and get off those awful DMTs.
Thank you again to the HSCT for MS community, and thank you to all my friends and family who encouraged me to brave this procedure. Your thoughts and prayers worked wonders. ????
I will post my ongoing results in a separate blog, including my EDSS scores as I improve.
Below is version 10 of the Mexican Method chart I created [see the bottom of the homepage for a copy]. Everyone interested is welcome to utilize it. Please leave my credit intact. It will continue to be improved, and I’ll post updates here.
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Yesterday’s rituximab infusion was a little more difficult than I expected. A few of us needed multiple shots of steroids to combat the side effects. After a half-hour in, my head turned splotchy red, and I couldn’t stop itching my ears, throat, scalp and face. I was light-headed. One girl started getting a blistery, red rash on her scalp and neck. Another’s tongue and throat started swelling. In came the nurses with hydrocortisone shots injected right into the infusion portal, and within a minute or two, like magic, there was relief for everyone. Suddenly, we all looked and sounded normal again. Then I passed out for probably 30 minutes. The infusion lasted a good 3 hours.Yesterday’s rituximab infusion was a little more difficult than I expected. A few of us needed multiple shots of steroids to combat the side effects. After a half-hour in, my head turned splotchy red, and I couldn’t stop itching my ears, throat, scalp and face. I was light-headed. One girl started getting a blistery, red rash on her scalp and neck. Another’s tongue and throat started swelling. In came the nurses with hydrocortisone shots injected right into the infusion portal, and within a minute or two, like magic, there was relief for everyone. Suddenly, we all looked and sounded normal again. Then I passed out for probably 30 minutes. The infusion lasted a good 3 hours.Add a comment
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.Add a comment
Yesterday’s blood test came back with a white blood cell count of 4000, which means I’m no longer neutropenic. ???? Wow. That was fast! I was one of only two people of fifteen who grew out of neutropenia so fast.
Frankly, I was a little worried because my stem cell harvest was on the low end of what people had reported; one Aussie harvested two and a half times what I did. However, Dr. Priesca said the harvest amount seems to be unimportant, as long as you reach a million per kilogram, which I easily cleared.
So, now no more face masks are required when Gwen and I leave the apartment; although, I will still be wearing one on the plane ride home on Saturday, and when I’m in crowded places, like an airport.
Gwen is feeding me a lot of protein. I need to put on a good 10-20 lbs before I start looking healthy again. Steak for dinner and again for lunch today.
Pain levels have been about typical for me, or maybe a little improvement. They were better right after chemo. I’m optimistic that they will continue to improve.Add a comment
The chemotherapy used in HSCT is designed to destroy the immune system. The subsequent stem cell transplant is designed to grow back a new immune system.
For this purpose, the immune system presence is measured by total white blood cell count (WBC). When the WBC is below a certain threshold, the body is in a state called, “neutropenia.” This is a dangerously low WBC, in which the body is highly susceptible to infection.
WBC is proportional to the number of neutrophils in the blood, or absolute neutrophil count (ANC). “Neutropenia may be characterized clinically as mild neutropenia with an ANC of 1000-1500/μL, moderate neutropenia with an ANC of 500-1000/μL, or severe neutropenia with an ANC of less than 500/μL.” * The measurement is the total number per microliter or square millimeter.
Yesterday, I think they said that my blood test showed an ANC of 1200 (I will double-check this tomorrow), so I was mildly neutropenic. Today, it’s probably lower, and soon, it will start to raise back up as stem cells in my body grow into new white blood cells. To track my ANC, I’ll have blood tests every other day until I complete my treatment here. I’ll continue to get somewhat regular tests for a few months after I return home to be sure I’m headed for normal levels.
As one of the patients in my group said, “this is what we paid for, to become neutropenic.” I agree. This is when the MS-infected immune system becomes depleted, and we get to grow back a brand new one.
A couple days ago, I tried to cut my carbamazepine (Tegretol) dose by a third to check my resulting pain levels. (My primary MS symptom is pain.) That was a bad idea. A few hours later, I found myself gobbling down the rest to make up the remainder of the dose. I guess I got a little cocky because my pain levels have generally been lower since the first chemotherapy. No worries. There’s still two years of recovery ahead of me, so I need to remember to buck the urge for immediate satisfaction.
Anyway, I’ve been getting a daily shot of the stem cell mobilization medication, filgrastim, and I’m generally just waiting things out in isolation at this point. My sister, Ruth, is here to assist. Equipped with her surgical face mask, she went to Walmart today to do some grocery shopping. She also bought me a Wahl hair trimmer (total body grooming kit).
Goodbye body hair. It’s been falling out for a couple days, so time to get proactive. Most of the other patients are already bald.
* Dale DC, Cottle TE, Fier CJ, et al. (2003) Severe chronic neutropenia: treatment and follow-up of patients in the Severe Chronic Neutropenia International Registry. Am J Hematol 72(2):82–93.Add a comment