Tuesday 4 November 2014

Met with Prof Slavin, Samira, and got my schedule today.  The party starts tomorrow.

Prof Slavin was very knowledgable and professional.  I asked him a couple of things:
Q (me) - Will a higher dose of chemotherapy / immune system destruction be beneficial in defeating my disease?  If you think so, then I want this.  Please.
A (Slavin)- My medical opinion is no.  We give you what we believe will help you, and what we believe is a safe dose. Here's my analogy: The largest bomb ever dropped is the atomic bomb in Hiroshima.  It was designed to kill everybody and everything.  But did it?  No.  People were coincidentally in cellars or wherever, and as a result, a small amount of people escaped death.  This is entirely possible with the 'bad' cells in your immune system, whether we give you an increased dose (or even a lethal dose) of chemotherapy or not.  A few of the 'bad' cells may escape death, or all the 'bad' cells may die.  It is impossible for us to know by medical testing shortly after HSCT.  (I will find out in the years to come, that's for sure.)
[That's his medical opinion, and Prof Slavin certainly knows more about this than I do, so I am happy to accept what they provide (for battling MS, I believe that any amount of chemo is better than none).]
Q - Can you explain this procedure (HSCT) to me?
A - Think of MS as an adult lion in the jungle.  If you meet this lion, he will not recognize you as friendly, and will most certainly harm you and may even eat you.  However, if you care for and feed a lion cub from birth, he will recognize you as friendly, and likely not want to harm you.  This is how we think of HSCT for Auto-Immune diseases.  Our goal with this procedure is to kill the cells in your immune system that are harming you, and replace them with new cells that can learn not to harm you - that will live in harmony with your body.  You cannot teach an old dog new tricks.  But you can teach puppies.  (Got a good laugh at that one.)

Prof Slavin also talked about mesenchymal stromal cells (MSCs), and their potential curative affect on damage to the central nervous system.  He was very positive regarding MSCs - even talked about how they are the likeliest candidate for anti-aging regimens (after being prompted by my father's question, which Prof Slavin really liked). MSCs are something that I will consider. Just not now. HSCT first, let's see how I respond, and then go from there.

Prof Slavin also asked that I provide updates to him on a regular basis, for the benefit of him, me, and others that are considering HSCT for their PPMS.  I agree, so I agreed, and I intend on doing this.

His final words to me were "I hope we can help you".  Me too, Prof Slavin.  Me too.

Here is my HSCT schedule, discussed in detail with Samira:
Day -6 (Nov 5) : 5mg Campath
Day -5 : 10mg Campath
Day -4 : 15mg Campath
Day -3 : 30mg Campath
Day -2 : 15:00 Bone Marrow Aspiration (collection), 16:00 Fludarabin 40mg/m^2, 18:00 Cytoxan 60mg/kg
Day -1 : 12:00 Cytoxan 60mg/kg
Day 0 (Nov 11): 10:00 Bone Marrow Transplant (I get back what they collected)
Day +1 to +14 -ish : Reduction in population of various cells
Day +15 -ish onward : Engraftment, as seen by an increase in population of various cells via blood testing
Once population of these various cells are at an acceptable level, I am free to go home.  Cautiously.

I will also be taking various medications (pills) during the schedule.  This is intended to help keep various viruses and bacteria down while my immune system is unable to keep them down.

Samira said that I will be in the clinic round-the-clock during Days -2, -1, and 0.

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It was another beautiful day in Tel Aviv, as shown below:



But in the evening it rained, so we ate room service (two thumbs up).  Weather here changes quickly. Here is a pic from last night's dinner out:


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For 5+ years MS has attacked my body with no resistance.  Tomorrow, resistance shows up in the form of biochemicals, and it will show up every day on each of the 5 days after that.  Thank you, resistance.  Please kick as much MS ass as you like.  The more, the better.

6 comments:

  1. Here's to Resistance and MS-Ass-Kicking!!! xoxoxo

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  3. Sending our hopes and dreams your way!

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  4. great posts. following and cheering you on every step of the way, groves. your constitution has always been one of hard work and perseverance; you got this. looking forward to catching up with you on this side of the pond once you take this treatment down. be well, brother. /digiacomo

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    1. thanks for the well wishes, rob. you (and yours) are welcome at our house anytime. after all, without you, there would be no 'us'. hope you are well.

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  5. You can do this!!!! Michael, Tomislav and I are rooting for you at home. Keep the updates going, they are great.

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