Post Radiation Update

October is over, and November is here. A lot has happened since I returned from NJ, but the most important things that have happened are that I have spent some quality time with my family and some friends, you all have SHOWED up for us in such significant ways, and I have been slowly recuperating. Thank you a million times over for always being such big supporters of our family. 

Highlights from October:

• #LightUpMBC — On my birthday, my friends planned a special lighting event at the Durham Community Church, lighting of houses around our community, and a giant fundraiser for Metavivor with Tideline, a local food truck venue and brewery and Sweetened Memories, a local bakery. It was a lot of fun and so beautiful to see. So much work went into the event. I am so grateful that it happened, that I witnessed it, and that it was so successful! My eldest sister was alos here visiting, which made the event even more special. Please check out the websites if you don’t know what #LightUpMBC or Metavivor is. 
• We went to Maine for a long weekend with Andrew’s extended family. We did plenty of relaxing in such a beautiful place, and it was just what I needed to recuperate after chemo earlier in the week. 
• We had a weekend where the boys went to Colorado, and the girls stayed home together. That was a fun little weekend for us to spend extra special time solo with one of our children. 
• C had her first school dance. She got dressed up, danced with friends, and had a blast. M hosted his Danish friend for a few days and took him trick or treating in Durham. Trick or treating is a new-ish phenomenon in Denmark, so it was fun to show them the American way. 
• I continued to get chemo all month (saci), and I am tolerating it well. My current schedule is two weeks on and one week off. So I am down in Boston for treatment two times every three weeks, plus when I have scans. 
• I had a couple of trips to the local ER on my off week from chemo in October for a “fever of unknown origin.” My SIL was a trooper and sat with me in the ER for many hours. Ultimately, the fever was mysterious, and I was given some antibiotics to take for a week, and it went away on its own. 

Current Treatment

As I said before, I am still on systemic chemo. I started the Sunday before I left for NJ, and we kept it going once I returned. This chemo is called Trodelvy or sacituzumab (Saci). I have tolerated this chemo pretty well. It’s a cousin to Enhertu, which I was on in the spring. With enhertu, I was rather run down and didn’t feel well on it for the better part of a week. With saci, I am usually down only for a day or two, and then I am back. I have a lot of fatigue still from radiation and saci, too, but fatigue is manageable when I am not feeling sick and foggy. 

My cognition is still not back 100%, but I am doing much better than a month ago. I have been tapering the steroid I was on, and as of yesterday, I am done taking that for the time being. I was on the steroid for so long, and it made me feel so awful (jittery, brain fog, weight gain, etc). I am happy to be getting a break from it. 

I have now had a brain scan, spine scan, and body scans since radiation and starting saci. I am pleased to report that the LMD has responded well to the radiation and that the saci also has had a positive impact on the liver lesions. So that means that as of right now, I have stable disease. This is a HUGE win! The cancer isn’t gone, but it is currently responding to the treatments and not growing. Shrinkage is good, but not growing new lesions is even better. 

We don’t know how long this will last. Sometimes this will be only for a few weeks, and sometimes this can be for months. I’ll get brain, spine, and body scans every six weeks. This is a short time interval between scans, but LMD can move quickly, and we need to closely monitor it. If I am symptomatic before scans, I need to act right away and call my doctor because that usually means progression. 

I learned that there are symptoms to look for that are unique signs of progression to the spine and brain. For the spine, I am supposed to look for new numbness/tingling in extremities, difficulty walking, or incontinence. For progression in the brain, I am looking for vision changes, changes in how my face feels or functions, or seizures. I hope that with a close eye on things, we can catch the progression before I am ever severely symptomatic, but you never know with this disease. 

What’s Next?

I have always appreciated my team for many reasons, but one of them is that there is always a “What’s Next” plan, which gives me a lot of hope. With LMD there is not a clear “What’s Next” plan. It’s sort of a wait and see approach. There are some options, but any changes to treatment have to be carefully weighed with quality of life during the time I have left, overall survival statistics, and if we are treating body or brain metastases. It’s not as cut and dry anymore. There are some chemo agents that I could still consider that cross the blood-brain barrier, but those are more effective on the body than the brain. So if there is progression in the brain, these aren’t the best options. One option that I have in my back pocket is pretty radical, and it would be for primarily treating the LMD. It’s something that Dana Farber has a little experience with, but they are willing to explore it with me if that’s the direction I want to go. If I go that route, I will explain it in detail, but for now, you should know that it’s a bit like the Wild West for my brain. 

For now, I am doing my best to regain some normalcy in my life — packing lunches and cooking dinners, doing laundry, organizing cabinets, carting kids to activities, etc. I don’t like being a full-time cancer patient — it’s an identity that really sucks for me and for my family. It’s hard for it not to take over a large part of my day when I am regularly on the phone with doctors offices, insurance, taking medications, monitoring how I am feeling, or at appointments. I want to take a break from all of this, but that’s impossible. So instead, I celebrate days when I have more energy, when I am able to get a few more things done and still take a nap, when I get extra snuggles from my loved ones, and of course, I will celebrate stability of the disease and tolerance of the current chemo!