So how did we get here? I haven't posted since 2017, so there's quite a gap, but I'll catch you up as quickly as I can.
The Imbruvica from my last post? It made me feel like hot garbage and it also caused lumps to start growing under my skin (extra points because that was not a known side effect). We tried decreasing my dose but it didn't help. So I was taken off of it before it ever had a chance to have any impact on my GvH.
Later, I started a drug called Jakafi. The details are not super important for this post, but I've been on it for awhile and it's supposed to be helping with my GvH. The GvH isn't really any worse, but it isn't a whole ton better either. It's very livable though, more an inconvenience than an active threat.
I started having more issues with my breathing and my lungs. We did two bronchoscopies and two or three CT scans. The scans looked different every time, but always concerning in some new way. The bronchs didn't turn up anything helpful. It looked like my lung was slowly collapsing and that other parts of my lungs were being overtaken by scar tissue. I was getting winded at the smallest things. I finally broke down and got a handicapped placard because walking on even the slightest uphill grade was exhausting.
That more or less brings us up to the last month. I'd had another CT that showed concerning lung images and we scheduled a third bronch. My pulmonologist took a biopsy during the bronchoscopy and that turned out to be where everything started to come unraveled. Initially, the local lab couldn't identify the cells in the biopsy. So they sent the cells to a world-renowned expert in Nebraska...who also couldn't identify the cells at first. But the guy in Nebraska WAS able to say that the cells were definitely abnormal. That bought me a PET/CT scan.
Several years ago, Medicare ruled that a person could only have 3 PET scans in their lifetime. I had already had probably 15 or more, so that meant no more fancy scans for me. But PET scans are the best scans for imaging Hodgkin's. They can show the size and intensity of any cancer that shows up. Plus they're in color! So without a PET scan we had no idea that what we were seeing on the CT scans was cancer. And we didn't have much reason to suspect it because Hodgkin's doesn't relapse after seven years of remission. It just doesn't. Except when it does.
So the abnormal cells in my biopsy were a good enough reason to get Medicare to spring for a PET scan. My first in years! I was really very excited because I hadn't had a PET in so long and I knew the images were infinitely better.
And boy did we get images. I have Hodgkin's in my lymph nodes. I have it in my lungs. You guys, I have it in my BONES. My literal bones. This is the worst scan I have *ever* had. By a lot.
Ugh. Ugh forever.
So today I started treatment for my shiny new Hodgkin's lymphoma. The reboot no one asked for or wanted. I'm starting with a chemo I've had before called Adcetris (or Brentuximab). We used it both before and after my second stem cell transplant and both times it was 100% effective at eliminating the cancer. I'm optimistic about that.
We're also taking me off some of my immune suppressants, with the goal of eventually getting me off them entirely. We have to be careful with that though. Without the Immune suppressants, my GvH could flare again (like when I had myositis) and that could try to kill me. But we want my donor immune system to do what I got it for in the first place: fight the cancer. The less we suppress it, the harder it can fight.
If I manage to get completely off the the immune suppression and my GvH isn't out of control, then I can try immunotherapy to further treat the cancer. It's a newer option and is wildly effective. If it had been available in 2012, I most likely never would have had a second stem cell transplant. But I'm honestly not overly optimistic that my GvH will cooperate for that. It could be an option though.
The plan for now is to do four cycles of Adcetris, which I go to get every three weeks, and then to have another PET after the fourth dose has had time to do its thing. If I'm lucky, I won't have many side effects from the Adcetris. I didn't the last time. But you never know. We'll reassess then and plot a continuing plan of attack.
Overall I'm just so bummed about all of it. Not angry, not terrified, not weepy. Just tired and SO over it. I've done this all before. The diagnosis is the same. The treatment is the same. Admittedly, the scan and the starting point are worse, but it's all so sickeningly familiar. I DID THIS. I beat it. We celebrated.
But the bad guy wasn't dead after all.
