We're home from Florida, and we're getting back into the swing of things. We left Fort Myers on Friday morning, 2/9 and made it to Chattanooga, TN that night. Florida and Georgia are lonnnng states, but we powered through, and we even got to stop for peach cobbler topped with peach ice cream somewhere in the middle of Georgia (yum). Then we stopped at Buc-ee's for gas and dinner about an hour before stopping for the night. We left Chattanooga in the morning and arrived home last Saturday around 6pm. We were happy to make good time, and it helped that we gained an hour that second day. It was good to be away, but the time in Florida felt long, and I'm very happy to be home. We got to celebrate Liv's 6th birthday on Sunday afternoon, and we met Raj to watch the Super Bowl that evening.

Then I had the day off on Monday for scans. My appts were a bit later than usual, so I ran a few errands before going to the hospital. As the flow always goes, I started with my nuclear medicine injection to prepare for the bone scan. Then I waited for my CT scan with the not-so-delicious barium drink (I switched back to mocha again this time). After the CT, the tech pulled out my IV, and she asked if I'm on blood thinners. I'm not, so I knew this meant my platelets must be low, which results in slow clotting. I cut my finger this week too, and I definitely noticed it bled more/longer than normal. I have to fast for the CT, and it was already 2:30 pm, so I was hungry when I was done there. I grabbed a small salad and ate quickly before going to take a nap in the bone scan machine. I was so tired I didn't even ask for music. I told the tech that I was going to nap, and I zonked out. I woke up briefly after each picture to adjust my position, if needed, but otherwise I pretty much slept the whole time. Afterwards, I went shopping a bit and came home to let the waiting begin...

My bone scan results came in first, on Tuesday afternoon. Tara included a note with them to say things were stable. As I know I've shared before, I don't focus too much on my bone scan results - I'm of course very happy they're stable, and that I have very few spots of metastases (mets) in my bones. I know I would focus on the results if they showed progression, but when they show stability, I don't assume that's predictive of what my CT results will show. Here's a blurb from the bone scan write-up (which say (in English) that the same spot in my right shoulder is showing uptake (cancer) at the same intensity as last time):

There is persistent single focus of abnormal osseous radiotracer uptake involving the right acromion, not significantly changed in intensity when compared to the most recent prior bone scan dated 11/14/2023 and corresponding to a sclerotic lesion seen on the same-day and multiple prior CT scans. No scintigraphic evidence of new focus or disease progression.

I anxiously continued my waiting until Tara called me on Wednesday afternoon to tell me that my CT results came back stable. She told me some of the specifics and released them in MyChart, so I could read them myself. We chatted briefly, and she told me that she and Dr. Flaum were both happy with these results, and that they do sometimes see that this combo of drugs may take longer to be very effective than chemo (like the Xeloda I was on, which showed pretty significant improvement at my first few scans). So that gave me hope that maybe my next set of scans will show shrinkage. And I knew I would have a chance to talk to Dr. Flaum more the next day. Here are some of the details from the chest, abdomen, pelvis CT (reminder that hepatic means related to the liver):

Several hepatic lesions are again seen: * A 5.3 x 3.4 cm segment 2 mass (3/51), previously 5.3 x 3.5 cm * A 3.5 x 2.0 cm segment 4a mass (3/55), remeasured on the prior study at 3.4 x 2.0 cm * A 0.7 cm segment 5 mass (3/61), unchanged * A 0.5 cm segment 6 mass (3/64), unchanged.

An aortocaval lymph node measures 1.0 x 1.1 cm (3/69), previously 1.3 x 1.3 cm. A portacaval lymph node measures 1.1 x 1.6 cm (3/61), previously 1.1 x 1.5 cm. No enlarged pelvic lymph nodes are identified.

Finally, here's the main point from the neck CT:

The enhancing nodule in the dorsal aspect of the left trapezius muscle is further decreased with only trace residual fat stranding. No progressive disease.

When I saw Dr. Flaum on Thursday, she could tell that I was kind of bummed by the stable results - I was really hoping to see shrinkage after my first 3 months on this new combo of meds, so I was kind of blah. I think I'm always kind of blah during scan week, though. Even if the results are good, it's a reminder that I'll have to go through the testing and waiting and anxiety cycle every 3 months for the rest of forever. It's exhausting! Anyway, she said she understood that I wasn't jumping for joy, but she reminded me that these results are good and that she's satisfied. And even though the most concerning of the spots (in my liver) haven't changed, there are a few spots that are smaller - specifically, the lymph nodes that showed progression on my last set of scans are now smaller, and the nodule on my neck/trapezius muscle has decreased in size as well, and now shows only trace residual fat stranding, but no more cancer. That's the spot that originally diagnosed my MBC. She reminded me that when drugs are tested for efficacy (in research/clinical trials), they measure average "progression-free survival" which means the average amount of time people stayed on the drug without progression, which includes both shrinkage and stability. That was a good reminder, and it gave me a bit more comfort with the results.

I asked her about the bone scan only having mentioned my right shoulder without any mention of the C7 vertebrae, even though my CT scans did say "unchanged sclerotic lesions in the C7 vertebral body and right acromion (shoulder) presumably represent treated intraosseous (bone) metastatic lesions." I was unsure why the bone scan results wouldn't mention the C7, when that's the test specifically used to look for bone mets. So she explained that the bone scan only mentioned the spot of focus of abnormal osseous radiotracer uptake, which was in my right shoulder, and that it didn't mention the C7 because there was no uptake there. She said that unlike other spots in the body, where cancer isn't visible anymore once it's gone, it's rare that it's ever completely invisible in the bones. So even if there's no active cancer, they can typically still see where cancer was in the bones. So, this lack of mention of the C7 in my bone scan is a good thing, and it means there's no radiotracer uptake (no active cancer) in that spot.

So I'll stay on the same combo of medication (Faslodex injections every 4 weeks and Kisqali pills once a day for 3 weeks on and 1 week off), and I'll get scans again after 3 more cycles (12 weeks). I have felt really good on this set of drugs. I don't have many noticeable side effects (maybe some fatigue and a bit of hair thinning (which I can only tell bc more hair comes out in the shower than it used to, but it's not bad)). And even though my blood counts have gotten low, they seem to bounce back up during my off week from the drug. I also told her how my hands and feet are doing now that I'm off Xeloda and don't have the hand and foot syndrome as a side effect anymore. In mid-January, my hands started peeling, and it got pretty bad (see pics). But I noticed how my fingertips had peeled first, and I made an assumption that it was my body ridding itself of the top layer of dead skin that was so sensitive while on Xeloda. It finally all flaked off (gross), and now my hands are a lot more normal. I still have some weird things going on around my nails, and I'm pretty sure I have an in-grown toenail on my left foot, which hurts a lot (I have to go see a podiatrist), but I'm glad the skin on my hands and feet are getting a lot better.

We also talked about some possible future treatments when this combo stops working. I told her that I'd really like to avoid IV treatment for as long as I can, and we talked about new oral treatments that have recently been approved, along with some that are currently being studied. I hope it's a long long long time from now, but my next line will probably be Orserdu (elacestrant), which is an oral medication that targets the ESR1 mutation, and is prescribed after having progression on other endocrine (hormone) drugs. I'll explain more if/when we cross that bridge, but I'm glad to know we have an idea in mind for what I'd likely move to if we see progression.

After the talk of scan results and some future drugs, she did a brief physical exam and sent me on my way... I got my Xgeva injection in my stomach (for bone density) and two nurses joined forces to give me both Faslodex injections at the same time - one in each glute. And since I had driven to the hospital for my appointment, I went and took a 25-minute walk around the hospital. I walked east so I could see the lake a bit, then grabbed a salad and headed home.

When I saw Dr. Flaum, my lab results weren't back yet, so she said they'd be in touch to tell me how things looked. Later, I received a note from Tara telling me my platelets were down to 76 (reminder that the low end of normal is 140-150), and my white blood cells/neutrophils were also on the low end, so they want me to get another blood test on Tuesday. If my counts have rebounded, I'll be able to start my new cycle of Kisqali on Wednesday, but if they're still really low, I'm guessing they'll have me delay the start a few more days and maybe get another blood test. My poor left arm. 😞 I'll schedule my next scans once I know when I'm going to be starting my meds...likely early to mid-May.

Unrelated to scans, I'll share that I started a writing workshop with Wildfire, which is the magazine publication for those diagnosed with breast cancer young. The workshop is for 2 hours on Thursday nights for 6 weeks. I've had 2 sessions so far, and I've really enjoyed it. It's a group of 9 of us who have all been diagnosed with breast cancer. Each time, we kick off sharing something about ourselves, and then we get into bursts of writing based on prompts. The workshop leader (and founder of Wildfire), April, will give us a prompt and set a timer. She tells us to keep our hand moving for the whole time. And after writing in response to 4 or 5 prompts, we get the chance to share something we've written. It's been a really great experience so far. In addition to enjoying the writing, it feels like a support group of sorts, and it's always nice to connect with people who just get it.

So, that's that - I'm tired and going to get ready for bed. Assume no news is good news if you don't hear from me for a bit. 😊 

Thanks, as always, for following along! xo