Sunday, December 17, 2023

3: It's go time!

 The value of a second opinion

“They” always tell you to get a 2nd opinion when given a serious diagnosis. Luckily, we’ve never been in a position to need one until now. On Friday, we had a telehealth appointment with Dr. Luke Mountjoy of the Colorado Blood Cancer Institute (CBCI). He’s one of the top docs in the country specializing in blood diseases, and in particular aplastic anemia (AA). He did exactly what I now would expect from a 2nd opinion. He went step-by-step through every possibility based on the dozens of tests they’ve performed on my blood. One by one he eliminated each based on the science and the data. Then he went through every possible cause and again, based on the test results, came up with nothing to pin down other than my case is “idiopathic” (which, I believe, is where 60%+ of all cases fall.) It was a logical, thorough process that led only to this one diagnosis possibility.

Next, we discussed treatment options. The only other option to IST (see previous post) would be to go straight to a bone marrow (stem cell) transplant, but that’s an extreme first option given my age and full-match donor pool possibilities. (A full-match is an immediate sibling, under the age of 50; a half-match would be one of our boys.) So, a bone marrow transplant is still on the table if the IST doesn’t do the trick. We’re going to get everyone HLA-typed (human leucocyte antigen) so we’d be ready to rock if need be in the future.

Dr. Mountjoy left us completely confident that we have an amazing team of professionals behind us making all the right decisions and that we’re on the right path. The best news was that he said my RBC numbers show that my body is working hard to make new ones, even though it’s not been very successful, that I’m “fit” (yay) and in relatively good health otherwise. He said the “odds are stacked in my favor” for a full recovery (yay again!).

What’s next

 

Starting tomorrow, I’ll be admitted to PVH at 7:00 am. (Ye gads - I don't normally even get up by 7 am!) They’ll hook me up to an IV and I’ll receive horse ATG (anti-thymocyte globulin – trade name ATGAM) twice a day for 4 days. It’s a medication made up of antibodies derived from a horse, specifically designed to reduce the number of lymphocytes responsible for causing bone marrow destruction (the “killer T-cells"). It’s produced by exposing a horse to human thymus lymphocytes , which then makes antibodies against these lymph cells. (In this case, thymus is not the herbal kind, but yes there is indeed a connection between thymus, the body part and thymus, the genus for thymes. Hort friends - google that when you have nothing else to do!) The antibodies are collected from the horse, purified, and then used to treat humans with overactive lymphocytes thought to cause AA. In other words, the ATG treatment will “calm down” my killer t-cells and get them back to a more normal state of defense.



An AI-generated image of a horse giving a direct infusion - this, of course, is NOT how it works, but thought it was an interesting concept. (Joel says I'm just betting on the horses!)



In addition to the ATG, I’ll also be getting oral doses of cyclosporine (another medication to calm down the T-cells) and steroids to help relieve side effects symptoms. I expect to be released on Friday sometime and then we’ll head home.

The teams

  • Team Cooper: Kathy & Mack Green, Bonnie Johnson and Cindy Catherman are on deck to make sure Cooper gets some outdoor play time twice a day while I’m in the hospital and Joel’s away from home.
  • Medical Team: James Moore referred me to Ross McFarland; both are in Fort Collins at the Cancer Care and Hematology Center (UC Health). Luke Mountjoy (CBCI) comes to Fort Collins twice a month and will be part of the ongoing team as needed. These three, along with their staff of nurses and others, work together a lot of the time and are all at the top of their game. 
  • Neighborhood, friends and family teams are at the ready should any need arise.


I’ll probably do another post later in the week, but feel free to comment, check in with Joel or I, or just send your good vibes out into the cosmos for us.

Someone posted this on facebook this morning and I thought it was appropriate to include here.

1 comment:

dbrink said...

Thanks for the update. The wit and focus come through as always. Good to hear you're confident in your team. In addition to the comments we will be sending good vibes out into the cosmos and holding you in our thoughts. Best wishes.

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