When Acute Hepatitis is Good News

 I'll start at the end, which is where the good news is, then I'll explain how we got here. We've learned that my liver IS the culprit that's caused my stomach to fill with fluid and many of my other issues. But it's not liver cirrhosis (which would have been very bad). It turns out that my Keytruda treatments caused me to develop acute hepatitis. Now people don't normally get excited about hepatitis. We're excited though. It looks like no permanent damage has been done to my liver and we can hopefully get it back to normal. Wanna guess what the treatment is?

More steroids! So I'll once again get all the great steroid perks like increased energy and appetite, alongside all the steroid drawbacks like insomnia, facial swelling, muscle weakness, and calcium depletion. But if we can fix my liver, it should all be worth it. (I'll also be taking diuretics, which help take fluid out of your body and make you pee constantly. Those aren't treating the liver though, they're just to help keep some of the fluid swelling off my stomach). 

So how did we get here?

My last blog post had us doing a portal vein study. Those results actually came back perfectly normal. My condition had continued to deteriorate though. I was so swollen with fluid I looked seven months pregnant!

About to give birth to 2.5 liters of fluid!

I was struggling to breathe when I walked even short distances. Eating was nearly impossible. My weight was stable, but I could tell I was getting malnourished because my fingernails were starting to come in looking very unhealthy. Something had to give.

So my doctor decided to check me into the hospital. My hospital has a special unit for bone marrow transfer patients that's entirely separate from the other hospital units. It was constructed to minimize places dust or germs could accumulate and catered to patients like me in every way. While there we were able to get a paracentesis done, taking 2.5 liters of fluid off my stomach. And that wasn't even all of it! They also tested the fluid, which came back normal. We did a CT of my abdomen, again clearly showing my liver was enlarged. Then we had the main event, a liver biopsy. Once the biopsy was completed we decided I would go home for the weekend. The results wouldn't be back until Tuesday or Wednesday and we couldn't do much of anything in the meantime.

I continued to feel exhausted at home. I was still getting short of breath at the slightest physical effort and eating was still a challenge, even after the paracentesis. On Wednesday I was back at the doctor for results and it was actually really emotional for me. I'd been so worried about cirrhosis, that even the "good" news of hepatitis struck me weird and I cried. After a day to process it though, and a meeting with a gastrointestinal specialist too, I'm feeling much better about everything. I *did* start 60mg of steroids yesterday too though, so that might be some of what has me feeling better.

As far as the acute hepatitis goes, there was a lot I didn't know or understand at first. This isn't a viral hepatitis and doesn't have a letter associated with it (like Hepatitis A or Hepatitis B). It is a drug provoked hepatitis that can, apparently, be treated with steroids and cured. It's also not contagious in anyway, so that's great too. I will be going tomorrow for another paracentesis to take more fluid off my stomach. If we're lucky, this will be the last one though.

Now we just have to give everything time to work!

Brave (Scary) New Frontiers

 Let me catch you up before I overwhelm you with new updates...

The bronchoscopy results were not helpful. Despite having biopsied from one of the areas that had lit up on my PET scan, the biopsy taken during the bronch came back showing no cancer. The problem is, that result does not mean there's no cancer, it just means there's no cancer in that specific spot we biopsied. And all the tests run from the lavage fluid came back negative as well.

That left us with very little to go on. I went several weeks without seeing my oncologist. It was too soon for another PET scan and without any useful results from the bronch we just didn't know what direction to go. It was nice to have a little down time with no treatment. My fingernails started getting stronger and looking normal again and my hair started to grow back just the tiniest bit. 

But then some of my cancer symptoms started creeping back. I've had a low grade fever for almost 3 weeks now, which initially we thought was a cold, but have eventually admitted is probably a sign my cancer is growing again. I've also had night sweats again and have been frequently feeling worn out. Plus I've started feeling like I have pressure on my chest and it's more laborious to breathe. These things all point to a likelihood that the cancer in my lungs is growing again. 

So after conferring with Dr. Essell, we've decided we're going to try immunotherapy. I've talked about this as an option before, but always as an option that scared me. Immunotherapy will stimulate my immune system, which will hopefully cause it to kill any remaining cancer. But because of my graft vs. host (GVH) disease, it could cause my immune system to flare and attack my body. Basically, my donor immune system would not recognize my body and it would attack my body, but with extra power from us having boosted it.

Immunotherapy is the last treatment option we have that has the potential to put me in any meaningful kind of remission. If the immunotherapy fails or if my body can't handle it because the GVH, we're down to options that can't really put me in remission, that could only hopefully keep me alive a little longer.

So this treatment is double scary. Scary because it may try to kill me itself, but also scary because if it fails we've run out of life-saving options and are only left with hopefully life-prolonging options.

So things are about to get going! I'll go for a new PET scan tomorrow to establish a baseline for when we start the new treatment. I'll also get a COVID test while I'm out tomorrow because I'm scheduled for a minor surgery next week. Once my COVID test is back negative I'll go in to have (ANOTHER) port put in for treatment.

This won't be my first or my second port; it'll be my third. And that's not to mention all the lines that I've also had placed over the years. My chest is a mess and we're not entirely sure there's a place to put another port. The surgeon is going to take a look at my chest and see if there's a spot that will work, but there's a chance they'll actually have to put the port in my leg. If that's the case, it's going to make getting my treatments an interesting affair!

If everything goes smoothly, I'll be getting my first immunotherapy on Friday, August 14th. I'm really nervous about it. So please send lots of good vibes my way. 

Side note: We are still as fully isolated as possible because of COVID-19. We're not eating out or doing takeout from restaurants. Nor are we having any visitors. For the time being please don't send food or flowers, just because we're "quarantining" anything that comes in the house for three days before we bring it all the way into the house. We have to be as careful as possible as we get ready to start this new treatment!

Cancer: The Reboot of the Sequels to the Unwanted First Five Episodes

Horror movies are notorious for continuing to come out with sequels long after you were CERTAIN the bad guy couldn't possibly have survived that last ending. In much the same vein, my Hodgkin's lymphoma has decided to reprise its role in my chest. An unwanted new chapter in a saga that even my doctor promised me was LONG over.

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.