Updates from the MBC Rollercoaster

Let me first say that the metaphor of a rollercoaster has some of the same issues as “journey” or other typically positive things, but it has been a good way of explaining the extreme ups and downs of this experience. As I pass 6.5 years of living with Stage IV Metastatic Breast Cancer (MBC) and am in that coveted position of being a bit of a unicorn or outlier, I don’t find that weathering the ups and downs is any easier, just that I tend to have more tools at my disposal, as well as people around me who understand it differently.

So, here’s what’s going on … during my fourth (4th) cycle of the clinical trial I’m in (my 6th line of treatment), the results of my tumor markers were elevated beyond the levels present when the last progression occurred. I realize that many patients and doctors don’t follow tumor markers because they are often not accurate and no diagnostic or treatment decisions are made on tumor markers alone. For me, over the last 6.5 years, the elevation in my tumor markers has predicted accurately every single progression before said progression was verified by scans. Now, I realize, and my doctor reminded me, that tumor markers are affected by many things including inflammation. Additionally, the clinical trial I’m in involves immunotherapy and it’s the first line of immunotherapy I’ve received, so we didn’t know how my body would respond.

With all of that in mind and trying very hard not to prematurely react, we asked for scans to be done sooner than originally scheduled and my doctor agreed there was sufficient concern to do that. While I am used to receiving PET/CT scans, the clinical trial I’m in requires a Nuclear Bone Scan and CTs of the chest, pelvis and abdomen. Yet another data point that is a bit out of my comfort zone. You can read a bit about that scan experience in a previous post: The Story I Tell Myself.

After that pretty difficult scanning experience while already super anxious about the results, we waited with bated breath. Thankfully, the CT scans all came back within a few hours without any major concerns, except for lung scarring (more on that below) and mention of a healing fracture in my pelvis we hadn’t previously be aware of — bone mets are hard on the bones and I’d previously had radiation to my pelvis. It was the nuclear bone scan that caused the consternation, noting “uptake consistent with progressive disease” in the impression, specifically at the two bone mets where I’d had radiation in the fall last year.

My doctor kindly sent me message about the scan in my patient portal and made sure I had a telemedicine visit for the day after the scan results posted. She knew that I’d be concerned about the results and reassured me that the uptake in those specific sites in the context of immunotherapy was unlikely to be progression. We agreed on several other tests to add a few data points for my peace of mind and also that we will scan a bit sooner than four (4) cycles as the clinical trial protocol allows for scans earlier. I’m actually pretty excited about the possibility of Signatera testing, which may actually be a better measure while on immunotherapy, just crossing fingers that the only soft tissue mets we’ve been able to biopsy will be sufficient.

As to the lungs, well I’ve a lot of scarring now in all of the lobes, plus more nodules (we’d already been watching a few). I’d previously requested a referral to a pulmonologist specializing in Interstitial Lung Disease (ILD) in order to be prepared for a possible next line of treatment and was able to meet with him within the same time period as all of the scans as well as complete a pulmonary function test, so I’m glad that I can work with him on these new results. No symptoms to speak of and ILD is a known side effect of at least one of the medications I’m getting in the clinical trial.

Treatment is this week and I’ll also be completing the rest of the “restaging” testing required by the clinical trial, mostly bloodwork and heart evaluations, plus a Brain MRI as a precaution. I am thankful for my doctor who is understanding of my need for more information, for confirmation, and works with me to get that.

In all of this medical activity, I’ve dropped the ball on a few projects and there’s quite a few emails sitting in my inbox that need to be addressed. When appointments and testing and scans rev up, I find myself often unable to focus, unable to complete tasks that are typically routine. The laundry certainly piled up a little too and I can’t say I’ve been at my best with the various presentations and moderation responsibilities that have occurred in the midst of all of this. I am thankful to be working with people who are understanding of my need to pull back a little when managing the flow of medical information and so thankful to those people who have gently and consistently checked on me.

More updates to come …