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News and Opinions about MS, Health & Disability

From Russia with Test Results for HSCT

on October 29, 2016
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Regular readers of this column will know that I am convinced about the efficacy, reliability, and safety of Hematopoietic Stem Cell Transplantation (HSCT) as a treatment for MS. In fact, a few weeks ago, you learned through this column that my decision was made; HSCT was for me.
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Hey, that’s me in my new wheelchair in the HSCT centre in Moscow, with Dr Fedorenko and assistant Anastasia.

Dates were agreed, flights were booked, special assistance was arranged, and coach travel from my home to the airport was organized.Knowing that there are other health conditions that might make the treatment impossible, or ill-advised, I spoke with Dr. Denis Fedorenko, head of HSCT therapy in Moscow, by phone and asked his opinion. He asked me to travel to Russia so he could oversee four days of tests before making a final assessment.

But that was not enough. I had to obtain a visa from the Russian Embassy before traveling; and as a British citizen living in Spain, that was no easy matter. But, eventually, it was granted and I was set to travel.

The plane touched down at Moscow’s Sheremetyevo International Airport close to 5.15 a.m. on Monday of last week, where a hospital car and driver were waiting. Learning that this was my first time in Russia, he whisked me on a diversion into the city itself, showing me Red Square, the Kremlin, and the Bolshoi Ballet. “And that,” he said, indicating a nondescript office block, “used to be the headquarters of the KGB.”

I didn’t ask about its current use.

Pre-HSCT tests

That day was the start of the most exhaustive and exhausting series of medical checks in my entire life. They included MRI scans of my brain and spine, as well as my chest and abdomen, and ultrasound scans of the veins in my legs.

Decision day was Thursday, when Dr. Fedorenko came to my room with all the results. The key findings were:

  • I have progressive MS, but all lesions in both my brain and spine are inactive
  • My prognosis, according to Dr. Fedorenko, is that the MS is unlikely to progress and, if it does, it will only do so slowly
  • My heart (I already knew had an irregular heartbeat, or atrial fibrillation) is totally OK on one side and, overall, pumps 10 percent less blood than it should
  • My lungs operate at 90 percent capacity
  • My vitamin D level is below the usual scale

Based on the fact that my MS is inactive and that chemotherapy could pose a threat to my heart, Dr. Fedorenko took the totally understandable decision that HSCT is not for me.

“In your case, with the MS not progressing, the benefits of the treatment do not outweigh the risks to your heart,” he said.

In short, as MS progression is currently stalled with inactive lesions, for which I am grateful and in a happy place, I don’t need HSCT.

This article, written by me, first appeared on Multiple Sclerosis New Today.

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ian profile

50shadesofsun.com is the personal website of Ian Franks, who is Managing Editor (columns division) of BioNews Services. BioNews is owner of 50 disease-specific news and information websites – including MS News Today. Ian has enjoyed a successful career as a journalist, from reporter to editor, in the print media. During that career he gained a Journalist of the Year award in his native UK. He was diagnosed with MS in 2002 but continued working until mobility problems forced him to retire early in late 2006. He now lives in the south of Spain. Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective and is a keen advocate on mobility and accessibility issues.


5 Responses to “From Russia with Test Results for HSCT”

  1. Annie says:

    It’s been interesting reading your blogs Ian, I am sorry to hear of your heart stopping you from having HSCT but also good to hear Dr F’s opinion on your MS being stable.
    I value your opinion, may I ask what your stance is on HSCT at clinica ruiz in mexico? Efficiency compared to russia? Being that they split their chemo days rather than 4 consecutive as Russia do?
    Am intrigued to hear your opinion.
    Kindest regards,

    • ian0811 says:

      Hi Annie, I have only heard good things about both Moscow and Clinica Ruiz in Mexico. Veterans of both centres speak highly of the standard of care and positive results. It seems that both chemotherapy protocols are effective but I would be interested to hear comments on this topic from anyone with first-hand experience.

      • Annie says:

        Yes, I would be interested to hear also. From what I can gather the mexican method seems gentler in that not everyone loses their hair, nor do their levels seem to go as low, or require transfusions etc following stories it seems to be a gentler ride, so curious to know efficiency status.
        ️Thanks so much for your response & time. Take care 🙂

  2. Ian, I heard at a Consortium of MS Centers meeting about your trip to Russia and its results. While I am glad you don’t qualify because your lesions are currently inactive I am sure you were hoping for HSCT.

    I see you asked about chemotherapy and I’m familiar with a local man whose MS was progressing rapidly. He had chemotherapy treatments under Dr. Stuart Cook at UMDNJ here in NJ. This man is now walking, driving, and working part-time (standing on his feet.) I saw him a few months ago and he lost weight, moved near the Jersey Shore and looks fabulous. If you want to know more please feel free to reach out to me.

    Best to you on your journey going forward. Thank you for sharing your important story. I enjoy reading your blog and column.

    Cathy Chester

  3. brad schlaeger says:

    i HAVE progressive with non active lesions and am interested.

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