Saturday, December 21, 2013

StemCell Boost, a Christmas Present from My Sister/Donor on day 261

Good Morning,

Today we have a happy post, about my boost.

boost

bo͞ost
verb
  1. 1.
    help or encourage (something) to increase or improve.
noun
  1. 1.
    a source of help or encouragement leading to increase or improvement.


      Back when I was a Yacht Broker, a presence at the Annapolis Boat Show was mandatory.  Sail and Power Shows, back to back. One year I had gone up alone early, or it was between shows and Army-Navy football match was going on- anyway I was staying in a rental house a few blocks from the Docks. After a  protracted dinner with friends at  McGarveys Saloon and Oyster Bar , my path home took me down along King George Street, past the Naval Academy.  I have been looking on Google Maps, and there have been some changes to the Fencing, probably post 911, but 25 years ago, there was a stand of tall Rhododendrons and Firs between the street and the tall wrought iron fence.

     I heard some rustling in that foliage, and stepped in to see what was going on. To my surprise, there was a group of cadets sneaking back in over the fence!  As I watched, one kid - a plebe no doubt - was giving a leg up to the last of the upperclassmen.


     When I cleared my throat, they all snapped to attention, and I think it was then the kid realized that he was going to be sacrificed.    I said  "stand down" in my most authoritative voice, approached the fence and then said,
      "Kid, if you learn nothing else here, don't be the last one over the fence".

   We were all a bit tipsy, but as I approached the fence, and assumed the leg up position he had used, he realized that I was going to "save his bacon, and started in with the  " Yes  Sir, Sir, thank you Sir".  I told him not to call me sir.

     I then said to the three cadets who had stranded their shipmate - and were poised to run off -

"I have to walk by the gate. Should I tell the duty officer  how you stranded a shipmate, and deserve to be flogged through the fleet?   The brig is too good for you", and before they could respond, walked away.

 I  have often wondered how their respective careers in the Navy played out.

     Today's post is about a different kind of boost, and sacrifice too, and is a happy day for me.
It involves a medical procedure that spans the ages, from the nano-technology of today, to the lodestone of old. High-tech to analog.

I have tried to be as optimistic about my progress as possible, but here I was after 8 months ,  day 261 of my post-transplant life,  still transfusion dependent, having Iron overload from the 100+ transfusions of Red Blood cells, with a compromised liver from all the transfusions and the meds. And as I told those of you who sensed all was not Hunky Dory,  and called or E-mailed me privately know there was more going on at the cellular level then we had figured out yet. Even so,


Something has been wrong, and much effort has been spent by many figuring out what it is.

Today we look at "The Boost"

Follow me below the fold for a medical update, and  The Boost.  1,2,3,  Jump!



      I won't go into the theories of why my transplant was not having the desired results. Suffice it to say there has been wonderful collaboration with all the medicos involved.

     My Sister/Donor Laurie has been here in the Duchy of Durham for a week undergoing tests and getting Neupogen injections in preparation to my getting a 'Boost" of her stem cells. This time the Neupogen hit her pretty hard, and she has been sleeping many hours a day.

We spent several hours yesterday sitting with her while she was hooked up to the Aphresis Machine for the collection. 






You may remember her posts from back in May. Donor's perspective part 1  and
 Donor's Perspective part 2 .


      We had a great visit with my main medico, and  reviewed the history of my Stem Cell Transplant, the rationale behind the meds I had taken and taper rates,  the management of the GVHD, my continued need for transfusions, my biopsy results, why we settled on the Boost.  He paid me a great compliment when he said how much he enjoyed working with me, as I asked the same questions - sometimes after, sometimes before - that he and his peers were asking themselves and each other when my name would come up, which it does often, apparently.  He said  "…it is like treating a Doctor, only you don't have the attitude".

My cover was blown, little did he know I do have the attitude! Hah!

Seriously, it goes to show that if you are not willing or able to be your own patient advocate, you need to have someone who is capable of asking the right questions.





After the visit, we went back to sit with Laurie as she finished up her time on the Aphresis machine, harvesting her cells.



First time they collected  6 Million cells, this time they collected 8 Million.

The Procedure:

Last time, April 3rd 2013,  I was injected with Laurie's stem cells, and her white blood cells, those predatory T-Cells that seek out and fight infections-the warriors of our innate and acquired immune system- that bring  on the Graft VS Host reactions. This was necessary to wipe out any of my cells that the chemo had missed ( very few it turned out) .  

This time we only want the CD34 cells, the mother cells, the progenitors whose babies become Red Cells, Platelets and White Cells too, but we don't want to transfuse any of the predatory T Cells, and bring on another bout of GVHD.  Still with me?  We need to transfuse only the Stem Cells, the progenitor, mother cells.

How, you may ask, can such a thing be done?

High Tech Meets Low Tech, sort of…

In a nutshell , the blood product collected from Laurie is run through a device that exposes it to bazillions of nano-beads each of which has a minuscule bit of iron inside.  These nano particles are coated with the right HLA for the receptors on the CD34 Cells, therefore only the CD34 cells pick up a bead. The entire harvest is then passed through a fairly strong  magnetic field, and Presto! - you guessed it -  the ones with the iron are separated out, and the rest are flushed out and wasted.

OK, this device employs an fancy electromagnet, and the teslas, the strength of the magnetic power can be adjusted. It is manifestly not a lodestone- but humor me and allow me a digression into the World of the Lodestone.

Lodestones:

From wikipedea:
One of the first references to lodestone's magnetic properties is by 6th century BCE Greek philosopher Thales of Miletus,[8] who is credited by the ancient Greeks with discovering lodestone's attraction to iron and other lodestones.[9] The name "magnet" may come from lodestones found in Magnesia.[10]

In China, the earliest mention of the attraction of a needle appears in a work composed between 20 and 100 AD (論衡): "A lodestone attracts a needle."[11] By the 12th century, the lodestone compass was being used for navigation in medieval China.

I found one of these Gilbert Scientific Kits from the 20's  in the attic of the house we moved into when I was 5.  








It had a bit of magnetite and this experiment




Pretty strong, Eh?

Could a cyber-terrorist dig up a lodestone, and use it to wipe the data off a Hard Drive? 
Certainly it could affect the strip on your credit card.   Watch for a post on magnets.

OK, enough of that, back to the Boost.

Approval needed:

       I am working on a separate post/screed/rant about the whole stem cell controversy and the ethical and theological opponents and proponents, and the govt reg agencies, and why poorly educated elected representatives with political baggage make the laws... don't get me started.

     Here is where Laurie and I think alike. Harvesting her stem cells is an extension of her being a Red Cross Blood donor, which falls under civic duty or responsibility . Using umbilical stem cells, as opposed to just discarding them is ok too.  These procedures are non-invasive.  Once the harvesting becomes invasive, i.e., once you stick a needle into an embryo, the rules change,  and the door swings wide for ethical discussions and rants and protesters, for those cells open the door for cloning, and all the frankenstinian implications posed therein, like fetus rights, when does life start, etc.

 This is not that.
       My procedure has to be approved by the FDA though, and my medicos were able to get a preliminary approval, based on there being a "life or death " condition. This was enough to proceed with the treatment, which is still like a clinical trial, or a research experiment on humans, ergo the FDA involvement.   Mind you,  procedures like this have been around for almost 20 years, mostly in pediatrics, but the Feds still want to cover their asses  and look out for ours when it comes to stem cells. 

     After that, there is also a case review by an in-house  Institutional review board, but the board members usually trust in  their own Doctors,  so it is just another layer of CYA. If this subject is of interest to you, I suggest reading this blog from Harvard Law



    And of course, the procedure must be paid for. Propitiously, my Blue Cross Blue Shield  Transplant Case Manager Advocate, a twenty year veteran RN, BSN, OCN, CCM from Stamford, the left coast leader in Stem Cell Transplants, has been monitoring my post transplant symptoms, and had not closed my transplant claim yet.  Big Sigh of relief there.

The lab:


The lab got Laurie's blood product from the apherisis device  around 1600  on Thursday, and delivered the goods around16:30 today, Friday.


Bag read in and hung.

Infusion:

Meanwhile we had started an IV w/saline drip - straight shot , no pump, with a three way valve.



Note the bag ofCD34s has it's own little saline bag already piggy- backed. I asked the Lab Lady about that and she said that was the way they always did it , for pediatrics.  I must have looked puzzled, for Laurie and Anne both said, "and you are 8 months old, remember? " 
The proud Donor
The Elated Recipient


      We talked for a half hour or so while waiting to see if there was going to be any reaction or rejection. These were A+ CD 34s, and my type has not yet flipped from O+, but my Biopsies show I am 98% donor, with a +/- of 2%.  We found that we could repeat this procedure again, if needed, and the lab had frozen 1/2 of the CD34's in case I need another dose, so Laurie would be spared a third Apherisis - but she could still do that too if needed - she would not age out on being a donor.  However, she is the only one that could ever be a donor for me, ever. I would not survive a new MUD, ( Matched Unrelated Donor.)
   
     Still no reaction, and no reaction after we went back to our Motel room, and opened a bottle of  Sparkling Cider from Foggy Ridge, and no reaction after we went across the parking lot to the Bleu Olive Bistro for a celebratory meal.  And no reaction while we exchanged Christmas presents tonight, nor while I pen these words. We have snuck Laurie into our room for the a slumber party/sleep over before we put her on a plane tomorrow.  I figure if we get busted for three in the room, I can insist that we have our DNA tested, for Laurie and I now share the same DNA, therefore we are the same person, hence there are really only two people in the room!

Hah!

Chris




11 comments:

  1. You are a gift to us all, Chris Siegel! Wonderful news! Words can't begin to describe my happiness as I read your post. Thank you for keeping us in the loop. A huge hug to you, Annie, and your sister. xoxoxo

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  2. Thanks for the update Chris. Been thinking about you and Annie. Best Christmas gift (or Hanukah) that I've read yet. Love to all of you.

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  3. What a great Christmas gift! I'm hoping that "no reaction" is a good thing? When/how do you know if the new cells have turned the tide? Hope that reaction happens soon! Love to all, Judy and David Wooten

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    1. Hi Judy, No reaction is good. A reaction might happen if some of Laurie's T cells, the warriors had made it into the fusion some how. Also, even though my type has not flipped from )= to Laurie's A+, there was a little bit of risk ( < 2% ) of a hemolytic reaction. No , I show 98% donor cells, including a Y chromosome. Watch for the post on that!

      Happy Winter Solstice! I feel like the Sun has dipped low to the earth to warm the cockles of my circulatory system.

      C

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  4. I love the photo you posted as much as the positive progress! I'm back in town and so looking forward to seeing you and Annie. My Best to Annie and Laurie and I hope to see you soon.

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  5. you certainly are a boost , an inspiration, a lift to us all with your clever smart and humourous postings... especially as i read this at the moments of the solstice, here comes the light...
    congratulations to you dear friend

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  6. After all of that, you still managed to sneek in a plug for Foggy Ridge Cider! You are the best.

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  7. Fabulous! So happy for you all! Happy Solstice to ya!

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  8. You make my mind soar and dance, Chris..you're a marvel. Here's something to make you spirit soar: http://www.upworthy.com/find-out-what-a-bunch-of-happy-smiling-fulfilled-people-are-calling-their-best-free-therapy?c=ufb1

    Patti Frank

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  9. Happy solstice to you, annie and Laurie. I am writing this just as the sun made its turn (or actually it is the earth that turned, right?) toward its journey to the summer long light! You guys are miracles in action to me and I thank you for your this Christmas gift! As the song says, "All I want for Christmas is you"! and sho' nuff, looks like we will have you!
    Susan Ketchin

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  10. I have been negligent keeping up on the blog. Now I have Pick a bale of Cotton stuck in my head. So very happy the boost is working, You have been through so much, and you keep this amazing dialogue worthy of medical student requirements. Love you both, miss you Marianne

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