June 19, 2016 Almost 2 years post HSCT

My last post was almost a year ago. It’s a whole lot easier to post positive, upbeat blog posts.  It’s been a rough year, and I’ve done a lot of questioning throughout.  Did HSCT halt my progression?  Would additional treatments help?

When I started researching HSCT for PPMS, I connected with as many other PPMSers who had undergone HSCT as I could, but there were not many others who had gone before me.  I was only the 45th international (non-Russian) patient treated in Moscow.  At that time, only Moscow and Tel Aviv would treat primary progressive patients.  The results for the PPMS patients were mixed, and it was still early in many of their recoveries.  I made the decision to pursue HSCT and told my family and friends about my decision.  I was thrilled that there was something I could finally do to try to alter the course of my disease.

Roughly two years later, PPMS patients can now be treated in Russia, Israel, Mexico and the Philippines.  Russia has treated 255 international patients!  The most exciting news is that there is also a PPMS patient currently being treated at Northwestern in  Chicago, by Dr. Burt.  I’m hoping she’s the first of many!  Dr. Burt’s Phase III clinical trial, the final stage, will be competed this year.  There will be a 5 year required patient follow up, ~1 year to write and publish a report for peer review, ~1 year to write an FDA submission, ~1 year of committee review.  Hopefully by 2022 the FDA will finally recognize HSCT as an option for MS patients in the USA!

My first year post-HSCT was a practice in patience and I learned to expect the unexpected.
I had hope for a stable future, an end to my progression, and an increase in the quality of my life.

My second year was more difficult and I started to question if my progression had really been halted.  I struggled with balance, walking, strength and overwhelming fatigue once again.  Dr. Fedorenko sent out a post HSCT questionnaire in January 2016 which helped me clarify my concerns.  In February 2016, I made the decision with Dr. Fedorenko’s help to pursue additional “booster” treatments to halt my progression.

The additional treatments to stop the progression are Rituximab infusions.  Rituximab is a monoclonal antibody drug that is used to treat diseases with overactive or dysfunctional immune B-cells.  It binds to the protein CD20 on the surface of B-cells, which helps other cells locate and eliminate the overactive B-cells.  Rituximab was part of my initial treatment in Moscow.  It’s not a big deal to get extra Rituximab infusions.  However, it IS a big deal to convince insurance to pay for it.  There are some insurance companies that will pay for it, but the process often involves a great deal of effort by the patient and their doctors.

I had my first “booster” Rituximab infusion last Thursday. Everything went well and I will have three more that will complete my HSCT consolidation therapy.  I’m still hoping to definitively stop the progression of my disease.

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Yes, I match the curtains and the chair :- )

I’ve been working with a new physical therapist for the past 3 months.  As a neurological PT, she’s been able to explain to me a great deal about balance and gait that I never understood.  She’s had me focus on exercises that all have practical applications for my movement.  I had a little epiphany when I noticed that the way I was shifting my weight for a balance exercise mimicked the motion of a “normal” gait.  She has me practicing walking with a Lite Gait, on a rubber mat with a cane, and around obstacles.  I’ve learned how to safely use a cane for short distances and stairs.  Yesterday, I walked 300 feet (less than 100 meters)with my cane! She also took the time to give me an exercise plan that breaks down what I should do each day.  In the past, I’ve always felt frustrated that I was unable to complete all of the exercises that I thought I needed to accomplish daily.  Now, I have a manageable plan.

 

Not attractive photos, but I wanted to show how I was hooked up above the treadmill. The straps take some of my weight off and I can practice walking unassisted.

PPMS is a horrible progressive disease can easily rob us of our dignity.  My family members that live with me help me with daily activities, take care of 100’s of daily tasks that seem insignificant individually but add up to an enormous amount of time & effort and are my lifeline.  I feel fortunate that my son, Adam, and my husband, Fred, are still available to help me.  I continue to need their daily assistance.

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Memorial Day Weekend at the beach. We borrowed a beach wheelchair from one of our neighbors. I was able to attend a cookout on the beach that would have been too far for me to walk. I also practiced walking while pushing it across the sand.

 

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I gave Charlie a ride as I walked.

 

I’ll be heading back to the beach soon. Every year, I wonder if it will be my last – if I’ll be able to continue using stairs and walking the 50 steps to the beach walkway.  For those of you who have followed my HSCT journey, it’s important for me to reiterate that I have no regrets.  I was incredibly fortunate to have received this treatment from the kind and devoted people working in Moscow’s Pirogov Hospital.  I’m so grateful to have the support of other post-HSCTers around the world.  We are a small group of individuals, but our numbers are growing.

I recently met a man with PPMS.  He’s the only PPMSer I’ve met outside of Moscow – and he lives 15 minutes from my house!  I hitched a ride with him and his lovely wife to my first informal MS gathering – a La Casa Internationale Del Pancakes.

Charlie is so smart and full of love.                                                                                                             We are all grateful that this sweet pup is part of our family.image

Charlie is so smart and full of love.                                                                                                             We are all grateful that this sweet pup is part of our family.

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This made me laugh!

 

 

 

 

 

 

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17 Comments on “June 19, 2016 Almost 2 years post HSCT”

  1. Bobby Litman says:

    Nancy, your courage is inspirational and I consider the day that I first met you while visiting Sue and Muzzy next door in Bethany Bach a very special one indeed. I’m not a very religious person, but now and then I do pray and ask God (if indeed he/she exists) to heal all those in pain, emotional and physical. And when I do, you are always included in my wish list. Many people would have accepted the hand you have been dealt but you chose to fight it and to do everything in your power to challenge and defeat it. You are one amazing human being. I am blessed to have met you and your family. On a personal note, your joining me to celebrate my 75th birthday last weekend made it a very special occasion for me, one that I will cherish for quite some time. Hugs, dear lady. Bobby aka Robaire (Litman)

    Like

    • Oh, Robaire, you are so sweet. I appreciate all your good wishes. You know I was so delighted to meet you as well. Being able to join you for your 75th birthday weekend celebration and meeting Rich & Marcia was really special. There’s nothing quite like celebrating milestones with friends and family! Come back soon! >

      Like

  2. Sandi! Thank you so much for taking the time to comment and be so encouraging. I really appreciate it! HSCT gave you a wonderful, full life and you continue to inspire all of us who came after you! Hugs to you, my dear friend. ❤

    Like

  3. Sandi Selvi says:

    I promise, you will keep feeling better and better. Attitude has a lot to do with it, and you have a great one. And the transplant works, I know. It has been 16 years 4 months since my transplant. Most people wouldn’t even know I have MS anymore. I’m back playing golf, no one expected that. I feel great and must say, HSCT gave me back a life that I want to live.

    Like

  4. karyn davidman says:

    Nancy, if you need to come to Northwestern for ANY care, you can stay with me!

    Like

  5. Susan P says:

    You go, girl! It would take a lot less to knock me down. Please post updates on your Rituximab infusions. You’re a trailblazer, leading the way.

    Like

  6. Thank you, Dawn! I’m doing the best I can with what I got. When the going gets tough, the tough get going : – )

    Like

  7. Dawn says:

    I know it is a tough journey! Persevere, don’t ever give up! You are doing great😀😀😀😀😀

    Like

  8. So good to see anyone doing the treatment for other than RRMS. I have read about good effects for this group too😄 But it is a long way for most patients I think. I haven’t updated my blog for a long time. And I have changed my name. But it is better. I have a lot of muscle pain. But that is due to weak muscles. And it didn’t get any better after I operated the ligament in my ancle this winter. So a lot of non-MS problems.💐 Good luck, and dont give up👍😃

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    • Thank you, Jorunn! It’s not easy to keep up with the blog posts! I remember you had HSCT in Israel and then had MSC. Am I right? I hope the muscle pain dissipates as you continue to get stronger. Non MS problems definitely get in the way of our recovery. Hugs to you & thank you for your encouragement. ❤

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  9. Barbara G says:

    2022 (or sooner) for the USA. Let’s see this come to fruition and be an accessible treatment in the USA.

    I also eagerly await a positive response to your Rituximab infusions (can’t come soon enough.)

    I love that your newish neurological PT has helped you formulate a manageable home exercise plan. The suspension above the treadmill seems innovative, and I commend you most heartily on never giving up and on always investigating new treatments and new treatment practitioners.

    I count Charlie’s love and the love and care from Fred and Adam as win-win’s for all of you. You give back so much to everyone in terms of demonstrating perseverance, courage and good humor. xo

    Like

    • Thanks, Barb! I am a fighter. I’m so fortunate that the HSCT worldwide community is so helpful & encouraging. This post has been viewed by people from 32 countries already. We’re passionate about spreading the word. It’s unfortunate that most people say their biggest regret was not having HSCT sooner. The lucky ones get HSCT when they are minimally disabled.
      Love you & thank you for your encouragement.

      Like

  10. Joan/Terry Rhoades says:

    gotta run…more later…

    Like

  11. Joan/Terry Rhoades says:

    Oh my…so glad to get a detailed update…what an ordeal…

    Liked by 1 person


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