Hey everybody, how are you?
It's Jess and it has obviously been a bit since I've checked in. I actually started to write a post last week, but in typical me fashion, I just got busy doing other things and I did not get around to finishing it. So instead of trying to force myself into this box of needing to write it all out, video is what you get. And you get to see my face and yeah, these great earrings. (Ok, and this transcript!)
First, I just want to kind of recap that, yeah, I was busy. I did a lot of really great things in September and the week leading up to it. If you've been following along, you might remember I started with the clinical trial at the NIH. That was the big news back in the last week of August.
Right after that, I flew to Tucson, Arizona to participate in a death doula, an end of life, training program with an organization called Going With Grace. I'm working on becoming a death doula and hopefully we'll expand on that a little bit more in a future post.
After the death doula training in Tucson, Chris and I were able to go to Brooklyn and visit friends, our old gym, our old community and got to see a lot of folks, which is always really, really nice. If we didn't get to see you, then hopefully we'll see you next time we're there. That's always such a special, it's always great to get back to Brooklyn.
And it really, this time around, really made me appreciate everything that the city has to offer a little bit more. Last time I visited, I think I was a little curmudgeon-y and kept complaining about the noise and the smells and all that stuff. We had really great weather while we were there and we got to see amazing people and so it was really fun.
Then after the trip to Brooklyn, that next weekend, I actually went to Kansas City to participate in the Fight CRC ambassador retreat weekend. I am honored to be a mentor this year for the new ambassador class. It was great to meet some really great, amazing people that are in this unfortunate club called the Colorectal Cancer World.
And then finally after that, my travel was done.
So for now I'm home doing things, you know, doing my regular things, volunteering at the hospice. I got to have grandma time today with the grandson. We went to an indoor play area, which was really awesome. Oh, and really exciting too is I started a fitness class with my local cancer group. So I'm doing that on Mondays, one day a week, getting some women into some strength and resistance training, which is great because that gets me right back in front of people, which I've missed. So it's nice to be able to do that and to give back to this community.
Okay, now maybe what you actually signed on for is that I finally heard from the NIH! And I don't know why I said finally, but I was expecting something around six weeks post-surgery. And that was last week. So on Monday, I just gave a call to my doctor. He called me back Tuesday, yesterday.
I was checking in to see how my baby TIL cells were doing. because there's still no webcam on them. My doctor let me know that it looks like we've got some progress. We've got some fragments that are showing successful growth, which is great. I have seven fragments out of 24 initially.
Apparently when they harvest the lesion, they divide it into 24 fragments. And then, I think if my understanding is correct, they each get their own little Petri dishes. And then of those 24, seven of them have shown signs that there is growth, which is good. In his words, we’ve jumped the first hurdle.
I was concerned about the number, too. I was like, oh, is that a good? Is it average? Is it low? He responded to not sweat over how many fragments are showing a response. Because even if we've got one good one, they've been able to proceed with the treatment with at least one that is showing signs of growth.
So good. My baby TIL cells, I like to think of them as they've grown to their toddler phase now.
And so now what happens is that there's testing that's being done in the lab. They're testing the reactivity of the cells, which basically means that they're seeing if they're actually effective at identifying and then targeting the cancer cells, because that's what we want. Provided that that happens then we'll head back to the NIH and then it'll be time for the re-infusion.
While they're doing that, they're also doing other testing. It's kind of like a branch we have two different routes at this point. Ideally we want the TIL cell growth and the reinfusion, but there's also something else called T cell receptors that they're testing. And to be quite honest, I don't remember all the details on that so I'll have to research that a little bit more.
But, right now things are moving along.
Lab testing still is going to take a bit, upwards of a couple months still. So it's wait and see. One thing my doctor said is that how we can think about it right now is, no news is good news. If he has to call me earlier then that might mean that there is something going on, like there's no response or no reactivity, and we've got to move to plan b.
The other thing we did speak about is that I am due for new CT scans and an MRI. I just scheduled that for November the 11th, 11-11. And depending on how that goes, if it is showing signs of disease progression, then that might change the positioning from the NIH. They might try to bump me up on the list a little bit more. They will try to get the lab to push all this testing a little bit quicker.
But it really depends. To be honest my CEAs, which is a marker, a test where they measure the cancerous load in my body, has been increasing a little bit over these past couple months. The CT scans and the MRI will give us a picture of if things are growing, getting a little bit worse, or if ideally they're just staying stable or getting a little bit better. Because all of that would just buy more time for the NIH to do the full testing and all of that.
So I guess what I will leave it with is that things are going as planned. Things are out of my control. I am back on chemo. I've had three cycles of chemo since the surgery, and it's the same regimen I was on before, which is chemo every two weeks. It's hitting me a little bit this time. It's a lot of fatigue, a lot of nausea, but we're working on managing all those symptoms.
Anyway, that's it for now. Thank you all for being here. Thanks for your love and support. And thanks to those that checked in because they're like, hey, what's going on with this NIH stuff?
Hopefully this helps to ease your mind a little bit and to kind of keep the hope going for my journey. If there are other questions and stuff, please feel free to leave them in the comments or reach out to me and I'll help answer all that.
Much love to you all, and I hope to see you all soon.
with love and gratitude,
Jess
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