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My Stem Cell Journey Continues

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We are getting so close to my October 1st stem cell infusion! I am so incredibly excited! And in case you missed it, this is how my first appointment went in July.

I had my most recent MSC appointment a little over a week ago on August 1st. I almost missed this appointment though thanks to not having this appointment in my phone calendar and thanks to a pretty rough night.

Starting with the rough night story… the night before my appointment, I went to my usual Mexican fiesta night with my sister-in-laws and not remembering that I had to wake up at 6am the next day, I indulged in a jumbo peach margarita. When getting home I remembered that my appointment was the next day and I had to sober up quickly and arrange for my boys to have someone to watch them since I would be leaving well before they were going to wake up. Of course I had insomnia and a horrible headache until around midnight. Then I tried going to sleep and my stomach started hurting. I awoke at 2am nauseous and ended up in the bathroom bringing back up a peach margarita. Feeling better, I returned to bed only to be woken up twice by both of my boys crying that they were having nightmares. So, when my alarm went off at 6am I had only gotten 2 hours of miserable sleep and was on my way to my appointment.

With coffee in hand, I arrived at my appointment with some time to spare. I had the standard set of tests performed including another MRI, 20 vials of blood drawn, OCT test, neuro tests, visual tests, visual evoked potentials and mathematics adding test. My brain hurts just thinking about that math test!  I found out that my previous MRI from last month did not show any new enhancing lesions, which is amazing because I have been off all MS meds since Feb. 19th, and ironically this was my first clean MRI since I was diagnosed.  I have been feeling a lot better overall since being off medications… hmmm… but I digress…

Anyway, I got the fantastic news that…

MY CELLS HAD GROWN AND MULTIPLIED!

They are now cryogenically frozen at Case Western Reserve and we are waiting on a test result to come back which tests for the sterility and viability of the cells. Once this test comes back, I have one last pre-infusion appointment which will put me through the same standard tests one last time before I get my stem cells infused into my body. That appointment is on Sept. 12th, and that’s when I find out that everything is officially a go for Oct. 1st!

And because everyone seems to be asking about the specifics of my stem cells and my infusion, I share with you a YouTube video which describes the mesenchymal stem cells that are instrumental in this study:

Mesenchymal Stem Cells Drive New MS Study/Treatment

And my infusion will be of my thawed stem cells through IV. I do not go through any chemo or radiation thankfully. I will be receiving about 2 million cells per kg of body weight. My main hope is that this infusion will stop the progression of my MS. I would love to see repair of damaged myelin and nerve/brain tissue and recovery of eyesight in my right eye and strength and coordination of my left leg and arm. Getting balance back and getting rid of fatigue and spasticity would be great too.

Crossing my fingers and saying my prayers!

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Patient #17

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It’s official. My stem cell journey has begun, and I am allowed to tell all and let you follow along my journey. I am also wanting to chronicle this for myself so I can look back and see how it all unfolds over time.

I am part of an amazing stem cell study being done by Cleveland Clinic, Case Western Reserve University and University Hospitals here in Cleveland, Ohio. There are to be 24 patients enrolled, of which I am officially patient number 17 (which has incredibly been my lucky number all of my life). This is a phase 1 study which is trying to assess the safety of autologous mesenchymal stem cell transplantation in people with Multiple Sclerosis. There are also some secondary measures that they are trying assess, one important one being vision. You have to have had optic neuritis at least once and I believe some thinning of the retina.

One week ago, June 12th, was my “screening” visit, where I went through a whole battery of tests and signed every piece of paperwork needed for the study to officially begin. I met the clinical team, including the lead investigator of the study, Dr. Cohen. Super great group of people and very thorough. I had blood taken, neurological testing, peg tests, memory tests, vision tests, an MRI, a visual evoked potential test, and a chest x-ray. For the most part, I will not be finding out the results of these tests to keep me blinded to my scores on some of these tests.

Basically, no news is good news.

I did get a phone call the next day telling me that everything was a go and that my EDSS score was a 4.0. This threw me a little bit because I was expecting my score to be a bit lower. For those of you who don’t know, EDSS score is a rating of disability for people with Multiple Sclerosis. For this particular study, you need to have a score between 3.0 and 6.5 to be eligible to be in the study. Anyway, after the phone call I knew that I was to be at University Hospitals on June 19th for my bone marrow aspiration. And that happens to be today.

Currently, I am sitting on my couch nervously waiting for the lidocaine and morphine to wear off. My aspiration was at 7am this morning, and I was done by 8. I did get an IV with a nice amount of morphine and lidocaine local anesthetic. But I will be honest with you… It still hurt… A lot. Because I am so little they had to do both hips. The doctor and nurses were amazing and so good, but there is no easy way to get through it without pain. You just breathe and bear it. They did get a lot of bone marrow and now we wait 5-6 weeks and pray that the stem cells grow and multiply beautifully. After they grow, they are cryogenically frozen and a small sample is sent for testing for viability and sterility which takes about another 5 weeks to come back.

Currently, I have two more appointments scheduled starting in August for more of the same testing, just to see how and if my MS and symptoms are changing prior to getting the treatment. Then I have a date of October 1st for my stem cell infusion! Although per the doctor, it might be sooner depending on the growth of my cells and other factors.

So, there it is.

Welcome to my journey. I hope this is an amazing leap for the treatment of MS and gives us some much needed answers and hope for the future. I will do my best to be candid and keep everyone informed as to my progress through the study.