Last week I went to Seattle for a football game and returned with a cold virus. Side note, being a football photographer would be a dream job! I've done free lance for some newspapers...just putting it out there, hint hint! Today is my 1 week cold-anniversary and we're settling in nicely. I can't say that I wish I had something interesting to report because no news is good news. I still haven't learned how to blog, so when I get an email like "how do I contact you?" I try to reply directly. "How do I sign up for notifications?" That one, I have no idea. I feel kind of like an open book at this point, but in my email/facebook questions the last few weeks, most have asked about my fatigue and side effects after Car-T. The cold is evidence of one side effect, my "compromised immune system." How I hate that phrase. There are times when I don't even want to leave the house because it seems like a Howard Hughes level of germ paranoia. I have a bottle of anti-bac in the side of my purse at all times (only not at a football game because purses aren't allowed.) Fatigue? probably none. I've never been someone who takes naps and I still don't. I have been an insomniac, and I still am. For that I've amped back up the yoga and it's helping.
There's a lot of exciting advances in immunotherapy right now, so many that I can't keep up. I'll do what I can, unfortunately I had to delete some of my earlier posts regarding study info and advances because--luckily enough--my blog has recently been featured on some type of Russian spam site. Sorry Russia, no offense. It could easily have been Nigeria. Anyway, the point is that some of my posts are getting a TON of traffic. If emails could be weighed, at least a ton. I thought they'd fade away but I don't want to mess with it and they're persistent! Since I really have no idea what I'm doing...I just deleted the posts.
I just saw this link, I can't believe that I either missed this article or somehow forgot about it. Most of the information that is out about car-t cells quickly revolves around the financial aspect and who is going to make the most money off of it, while my interest continues to be how many patients will benefit from this and how quickly lives can be saved.
In an attempt to keep this blog about Car-T & it's side effects, I'm going to address the topic of hair. As I wrote about in an earlier post, I did have 4 days of chemo prior to my infusion of t-cells. The chemo was primarily to suppress my existing immune system. It is so early in these studies that there isn't a consensus on the best way to go about administering t-cells. The Drs are learning right along with us. I am hesitant to speak too specifically about my particulars because there isn't a handbook that is being used, and my situation most likely will not be identical to another patient's. All that said, I'm naturally fond of not losing my hair. It was/is kind of a big deal to me. I've been there. Depending on the trial & the doctor, I'd guess that if someone was going to have cart19 immunotherapy, the recommendation would be a chemo prep that would cause hair loss. Also having said that, in anticipation of my own therapy, I found another patient--stalked may be the appropriate term-- who had kept hair and you can bet I got to the bottom of that. How was that possible? Long story short, it depends. Personally, I feel that if it's a question of living or keeping hair, the hair has to go. In reality, I addressed my affinity for keeping my hair before I signed on for the trial. The doctors were split on dealing with it, with one doctor saying okay, and one doctor's exact words being "He told you WHAT?" in complete disbelief.
Last night was the Super Moon/Eclipse/Apocalypse/Etc. Yours truly drove out to what was supposed to be the middle of nowhere to find about 300 others who also had the same idea. You'd think this was a big deal or something. Since I live on the edge of the middle of nowhere, I packed up and headed to the middle of nowhere versions 2 & 3 and got some photos. Stars! Yay!