Liver me this, liver me that

In March I had scans and they looked stable. The LMD and brain mets looked tiny still, which is always a HUGE relief. My liver lesions showed a little growth and a little shrinkage, but overall, nothing too dramatic that would cause me to need a treatment change at that time. The liver function tests (LFTs) were sort of trending up, but there wasn’t anything dramatic. My doctor and I decided we would go forward with the same treatment I had been on and scan again in six weeks. At that appointment we also discussed what would come next in the treatment line-up — one option being a clinical trial that included LMD patients. I was excited about that because usually LMD patients are excluded from trials (long story short, it’s about funding and FDA approval). Changing treatments is never a fun talk to have, but I was excited about the idea of participating in research again.

About three weeks after those scans I woke up from a nap one day with very swollen and painful lymph nodes in my left arm. A call in to my oncologist and we decided we needed to scan again and soon.

The results of that scan, just three weeks after the March scans showed that the liver lesions had grown, just a little, and the recommendation was to get a liver MRI to confirm the extent of the growth.

I haven’t spoken much about what types of scans I get and why, but insurance is a big reason I get only CT scans now, even though my doctor would like me to get liver MRIs regularly, since that is a location I have active cancer. My insurance has denied my request to get liver MRIs time and time again. CT scans are great for a general picture of the body and can be used as a measurement tool to track growth, but they are not finely focused and can show a lot of image noise when looking at a specific organ. So in my mind we could have had definitive evidence of progression a few weeks ago if I had been approved for a liver MRI and I would have made a different choice about treatment at that time.

While my doctors office was sorting out scans with insurance, we were also working on getting me qualified for this clinical trial. It was clear that it was time to move treatments as my LFTs and CT scans continued to trend in the direction of progression, albeit small at that point. I was also starting to have increased pain in my liver as it started to become inflamed and angry.

I signed my trial informed consent, started doing blood work, scheduled the other tests needed for a baseline for the trial, and was ready to rock last Thursday. Unfortunately, cancer had other plans for me. My LFTs came back WAY too high, even my bilirubin which has always been stable and normal for me was elevated. This was alarming. My doctor asked me to come back to Boston on Monday to have my labs drawn again. This time the LFTs came back even more elevated than before. I wasn’t going to qualify for the trial, and my doctor didn’t want to wait any more days to start treatment. We were worried, I was in pain, and I had been off treatment for several weeks at that point.

On Monday of this week I started an IV injection chemo called Eribulin. It’s an older chemo, but was used quite frequently before the last five or so years when a lot of these new chemos were approved. To be honest, I don’t have a deep knowledge about it besides what we went over in my chemo education appointment. Side effects seem like most chemos — some GI issues, hair loss (already lost that), fatigue (just pile more of that on), low blood counts (like red and white cells), and neuropathy. There aren’t many times where I feel like I don’t really have a choice in treatment options, but this seemed like one of those times. I could have refused treatment, or delayed it more, but if I wanted to keep going with a treatment this was my option. So I took the advice of my dear friend Moni (may she RIP) and said LFG.

And while all of that was happening, I also was able to get that liver MRI approved by insurance and had that scan on Tuesday. Bad news there…more than 70% of my liver is now covered in lesions. The plan is to keep a very close eye on my liver. I will be monitored weekly with blood tests to see if my liver function starts to trend back towards normal and we will scan in six weeks. If in the meantime the liver function doesn’t trend back towards normal we will change treatments yet again and hope and pray that I don’t go into liver failure.

If you see me around and I look yellow please let me know 🙂

And this is the tricky riddle of having metastatic breast cancer. A year ago I was changing treatments because the liver was acting up, but it eventually responded to treatment, with all LFTs heading in the right direction and scans looked good. In the fall my liver was cooperating and stabilized while we scrambled to treat and stabilize the LMD and brain mets. Now it’s the other way around again. We don’t have research to show how LMD or brain mets respond to Eribulin, so that’s a little scary. Hopefully I will continue to see residual benefits from radiation and previous chemo in the brain for weeks or months to come so that my liver has a chance to respond to Eribulin.

Please keep the good vibes, thoughts, and prayers coming my way. I’d love to give you all some good news in a few weeks when I get scans again.

XO