Thank you Trish Markey and “Science Friday”

 

I finally got on board with a Neurologist and staff in support of the Israeli protocol.

Yesterday I met my new Neuro Dr. Kita at Virginia Mason here in Seattle. She had obtained the records from Swedish and we were now good to go. My first impression was good.  When I got up and went into work last night…….I checked my email…….I think I’m now with the right Neuro.

I was concerned that her email would have some difficulty reaching Professor Slavin. So I forwarded him the following.

He returned a response w/in 15min.

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Dr Kita writes on my behalf:

 

Dear Dr. Slavin,

I had the great pleasure of meeting your patient, and now mine as well,
Todd Small.  I am a neurologist and MS clinical investigator in Seattle
and I look forward to working with you in his care.  We are all very
excited about what he and you are undertaking.  I wanted to touch base
with you to begin a dialogue about this care.  He has given me
permission to speak to you about his medical care.

Todd is s/p bone marrow extraction 6/30/09.  Following his return to
Seattle he has felt quite tired, overall more weak and having more
difficulty walking. He felt the “need” for his July Tysabri infusion 2
weeks earlier than when he was due.  He felt an immediate positive
impact of the infusion.  Then again in August, he was feeling the “need”
for the Tysabri infusion about a week early.  Again, following the
infusion he had a modest improvement.  This phenomenon of feeling due
for Tysabri is quite common in our patients who are still early in their
treatment (typically in the first 6-9 months) when the drug
concentration has not yet reached steady state.  It is something we tend
to see less of the longer our patients are on Tysabri.  Todd has been on
Tysabri for over 30+ infusions.  Both Todd and I made a guess that as
his bone marrow and white cell population is replenishing, he may be
requiring more Tysabri.

I drew bloodwork on him today as I am interested to find any clues to
help explain his clinical symptoms and response to Tysabri.

I do have concerns about maintaining him on Tysabri.  I am certainly
concerned about what is his overall level of immunocompromise.  But I am
also concerned about whether it is wise to keep him on an adhesion
molecule antagonist post-transplant, since we would expect Tysabri to
interfere with transmigration of cells across the blood brain barrier.
Do MSCs express alpha-4 integrin?  I am very interested in your opinion
about this.  While I understand you want his disease to be stable, I
would hate to interfere with any potential migration/transmigration of
the transplanted cells.  If you think it would be wise, we can hold his
September infusion and maybe additional ones as well, until you think
migration/transmigration is complete.

Also is there any necessary bloodwork we should be following pre and
post-transplant.  What changes, if any, do you see in the heme profile
post-transplant?  I intend to get a hematologist on board in his care
post-transplant. Perhaps this is overkill, but I think it would be of
interest for our hematologists and I would also appreciate their
involvement in case something went wrong.  What are some of the
complications you have encountered (uncommon or otherwise)
post-transplant?

Finally, Todd will be getting a new set of brain and spine MRIs on a 3T
magnet in September.  He will be bringing those studies with him for
your review as well.  My patients on Tysabri get scans every 6 months,
so we would have another MRI to look at 6 months post-transplant unless
you perform follow-up scans on a different schedule.

In my work with MS, most days are filled with uplifting interactions as
I share in the daily triumphs and struggles of my patients.  Some days
can be harder than others and on those days, to patients not doing well,
I have often specifically cited the work you are doing to provide hope
for their future.  How serendipitous that Todd should come under my
care.  I feel very privileged that Todd has included me in his journey
and has brought me in contact with you.  I hope to be able to learn much
more about how MSC transplantation can help our MS patients.

I look forward to working with you in Todd’s care.

Sincerely,
Mariko Kita, MD

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Profesor Slavin’s response was somewhat vauge………But it left me hopeful that I am with the right liason here in Seattle and that things will be properly sorted on both sides of the world.

 

Professor Slavin writes:

Dear Todd,

I am in contact with her already.
She seems very nice and very serious. You are in good hands.

Professor Slavin

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Some very valid questions……I thought.

I wonder because Tysabri works so  differently from the other interferon’s and glatiramer acetate used in  treatment of MS, would Tysabri interfere with the migration of cells?

We’ve still got time………and no worries……..but what if I would have done nothing and went with just this gut feeling I had?

All I’m saying is that……..you need someone in your camp on these things.

 

I’ll let you know what direction we are headed.  I sould know something by next week

Be Well

Todd

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