Update:  8 weeks post aspiration and all is well…………….

 

Scratch that………..things are great!!!!!!!!!!…….

 

I didn’t update last Friday…………But I could have…….and probably should have……..but I had fund raiser stuff all weekend.  Forgive.

My new team here in Seattle continues to deliver……….There were some questions last week when I left you guys……..

“Would Tysabri interfer with cell migration?”……………well……….you be the judge………

My care team seems to think:………

…………….. All systems are go…………

*******************************************************************************************

Dr. Kita writes:

 

Dear Dr. Slavin,
Thank you for your thoughtful reply.  The two prospects you mention are
highly intriguing.  I will await their development with great interest.
Based on your reply, we will make no changes in his MS regimen around
the time of the transplant.  We plan to embark on an aggressive rehab
program post-transplant.  I am trying to set Todd up with some regular
time on a lokomat machine in Portland.  The lokomat combined with other
tools such as his external ant-tib stimulator may help with enhancing
his function.

It also sounds as though we do not need to do any specific bloodwork.
His hemogram cam back essentially within normal limits but all
parameters were lower than we typically see with patients on Tysabri by
a factor of about 0.5.  His absolute lymphocyte count was 1700s which
while normal, is low for our Tysabri patients.  Cd4 and Cd8 counts
“within normal” with a CD4/CD8 ratio of 2.2, but the absolute numbers
were again about half of what we see in Tysabri patients.  I am not sure
why he is feeling the need for Tysabri sooner.

Thanks again.  I will be in contact again as we approach the transplant
time.  I will cc Todd on my reply so that he is aware we are
communicating.

Best,
Mariko

****************************************************************

Then we covered some other stuff……….Dr. Kita says last week:

 

Dear Todd,

 As you know I have been in contact with Dr. Slavin and we have exchanged a few e-mails now.  We have that road paved now and as time goes on we will keep communicating with each other.

 I would like to include another person in your team of providers.  Dr. David Yu, a physical medicine and rehab specialist, who has a special interest in neuro-robotics, neuro-regeneration and neuro-rehabilitation, at VM.  He knows of your transplant and I want him to be a part of your rehabilitation program. He is very excited about what you are undertaking.   Perhaps we could arrange for an appointment in the next several weeks?

 

Slavin does not think MSCs express integrin so does not think it will interfere with migration and would prefer not to make any big changes in your regimen.

 

I will talk to one of our hematologists to see if they want also to be a part of your care team, even if it is just a brief “hello, how are you” to keep them in the background if we need them.  If they think it is a good idea I will set up a visit.                                                                                                                         

 Dr Kita

*************************************************************************************

My response:

 

Dear Dr Kita,

 It’s funny how you have successfully “read the patient” in reference to your “get some rest” and “not to burn the candle at both ends”.  I am constantly reminded of how I always like to bite of more than I can chew.

 Going forward I would like to revisit to potential for this treatment to turn on the “JC virus” and the risk of PML.  Was any of this discussed w/ Dr. Slavin?

Todd

 

****************************************************************************************

 Her reply:

 

Dear Todd,

 I don’t know that the transplant itself has any impact on your risk of

PML necessarily.  Your bloodwork supports this presumption.  The risk

has much more to do with the Tysabri.

Dr Kita

**********************************************************************************************

Now today she comments:

 

Dear Todd,

 I got an e-mail back from the hematologist.  Here is what he had

to say:

 “Hi Mariko, Fascinating protocol!   From a clinical standpoint,

since he is not receiving conditioning chemotherapy or have an

underlying marrow disorder and this is an auto transplant, I doubt he

will have significant hematologic issues.  Toxicities may be more in the

area of autoimmunity and neurologic issues. I’d be glad to see him but

would prefer on an “as needed” basis. Thanks, Henry”

************** 

So there you have it.  He knows about you and is on board if we should

need him, but only if we should need him.

Dr. Kita

********************************************************************************************

 My response today: 

 

Dear Dr. Kita,

 Wow……Don’t take this the wrong way but……”I like you”.  You will slowly find out about me that I am so committed to this.  I so appreciate the hand holding and communication.

 This is going to work.

 Be Well

Todd

****************

 

To be continued……………………

Advertisements