Saturday, March 5, 2016

Introducing My Stunt Double and HSCT update

Maybe. An astute and avid reader of my blog, aka Mr. Factchecker, aka Shane, aka my Husband who I think only reads a post if I link to it from Facebook, pointed out last week that the post I wrote seemed really confusing, so I decided to try and clear some confusing points up. And instead I deleted it. Not on purpose. I  typed up some pre-ramble to add to it, then watched in horror/confusion/disbelief as my finger hit the delete button. Then when it asked if I was sure I really wanted to toss the post again I watched my pointer stretch itself out and almost reluctantly hit Yes. And it was gone. I'm not sure why I felt surprised. It was really like watching a car crash, something beyond your control. Except it wasn't. I probably only have about 20 minutes before the kids come in from outside (Oh wait, here they are) so I am not going to try and re-create the muddled mess it was. And you are welcome.

Things have been kind of busy around here. If you did happen to read the mysteriously disappearing post, it was about a "new" therapy for MS and other autoimmune diseases called HSCT, or Hematopoietic Stem Cell Transplantation.  It's not really new in and of itself, its been done for certain types of blood cancers for quite some time, but since it's "off label" it has to go through all the hoops before it is accepted as a legitimate therapy for MS. Meaning most insurance will not cover it yet. And it costs up to $400,000.

For the procedure, you have your own stem cells extracted. Then you are given chemo. Once your immune system is 'mostly dead' they swoop in and save you with the extracted stem cells they harvested in the beginning. The stem cells are naïve, that is, they  don't remember the taste of myelin and don't go around chewing on your central nervous system for another fix. Sounds great to me.

There are two versions of HSCT -Myleoablative and Non-Myleoblative. The first wipes out your immune cells, including the bone marrow cells. The non-myleo leaves the bone marrow alone. They have had amazing results with both versions, though the non-myleo sometimes needs a second round of chemo some months after. Initially it requires up to a month long stay, or longer, in a hospital. With the myleo HSCT it will require re-vaccination for your past immunizations, generally not  with the non.

Post HSCT the myleo version results in a complete halt of MS activity, the non tapers off over a few months or longer but eventually gets there. It does not do this for everyone, but around 80% or more, which is a far larger percent and with a far more drastic stopping of progression than any of the drugs your neurologist can give you.

Lemtrada is a newer drug just out for MS. You gotta love the names they come up for these drugs. The actual name of the drug is alemtuzumab. Under another name ( Campath) it has been used for the treatment of certain types of leukemia. It was pulled from the market in 2012, then returned with a  new name, Lemtrada, and a new price tag. Basically it went from about $2,000 a dose to $20,000.

The story is you get 5 days of it. Then a year later, 3 more days. I don't know if they know how long beyond that it keeps being effective. But it kills off certain of your immune system cells. And then does it again a year later. So you are constantly being knocked down. It makes much more sense to me to just get it all done at once, and then start to build up your new immune system and keep it going. It also  comes with some fun cancer risks and leaves the lucky recipient open to a host of opportunistic infections. Sounds fun, right?

While were on the crazy-name train, due out this year is ocrelizumab. Another immune suppressing drug. As we discussed all this with my neurologist I made the brilliant connection- alemtuzumab-ocrelizumab. They both end in MAB. And they are both monoclonal antibodies. MAB. My neurologist was quite impressed when I popped out that gem. Then she let me go back to watching Sesame Street.

And she very nicely took the paperwork from a clinic I am applying to and filled out the information they want. The previous week she ordered another MRI with gadolinium, despite the fact I'd just had one in December without contrast. It was worth it as there was an enhancing lesion, which you can only see with the contrast agent. As we were filling out paperwork at home Shane asked,

"So is it wrong of me to hope you have an enhancing lesion?"

All the gadolinium does is highlight any recent damage, meaning there is new activity and most of the clinics prefer to treat patients with active MS. Funny name for what causes you to become less active in real life. But we found one, so yeah me!

After giving her the paperwork we did the whole walk the line, touch your nose touch my finger routine. It was There was no math so I was happy. And I didn't totally flunk the balance part. Also good. She did say she'd I've me between a 4 and a 5 on the EDSS scale. (You want to be as far from a 10 as you can)

So after our second trip to the office, we finally had and submitted all the paperwork to the hospital in Florence!

What? Florence? I thought she wanted to go to Germany? Or the Hutch?

I did. But the Hutch said no. And after a couple weeks, so did Germany. But then we found Florence. They do the same procedure (BEAM, it's called) of myleoablative HSCT that the Hutch is doing and Germany does as well. Rumor on the Facebook HSCT forums is that Florence has a little more wiggle room for who they will accept than Germany. There is no other hospital offering the BEAM protocol. The Philippines is just about the same as BEAM. the others are non-myleoablative,  (Russia and Mexico).

But the advice is, apply everywhere and take what you can, when you can. So Shane did. I got to push the send button on the final application for Florence. So I had a part. And I got to read his correspondence so I got to see how well he presented me to them. They are in for a fun surprise if/when we finally get to meet in person. But They've seen my brain so I'm sure they are prepared. Or in for a fun treat. Russia, the Philippines, and Mexico all said yes but, again I want the full meal deal. One and done.

So we stopped looking at neat places to rent in Heidelberg and are looking at some crazy cool places in Florence and the Tuscan countryside. Not sure what might actually be the result of it all, but it is fun to think about the kids having a great time while I get some serious alone time.

I have also thought of turning this blog over to Shane, this is the stunt double part. He's a good writer and can communicate real facts in an effective way. And it wouldn't take him days to get the pertinent information concisely packaged and posted. But he has a job, so its kind of iffy.

Sorry if this still doesn't make sense. For the real story on  HSCT check out WHEELCHAIR KAMIKAZE'S blog.

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