Weekly Update #52

Last week I had a PET scan and the results were good! The tumors in my lungs continue to be stable or smaller. I am so pleased that we’re still seeing a response to this current therapy regimen. There was a small bit of progression on one rib, and a suspected new area on my spine, so I will do a follow up MRI to assess those and probably do another round of radiation in a few weeks. I tolerate radiation really well, and they’re short course for this sort of thing, so I’m not too bothered by adding that on for a bit.

My doctors really worked hard to get me results on my scan day which was really wonderful. I had brought a book to pass the time between appointments and had just settled down in a quiet spot when someone else sat down nearby and started watching news footage of a school shooting without headphones. It was more stress than my body could bear at the moment, so I went to the front desk and asked if they could put me in a room early. It was a little thing for them, but made such a difference in my experience to spend the next two hours in a quiet, relaxing space rather than gritting my teeth. My husband was able to join me while we waited for results and it was fun to pass the time playing pictionary with him.

One of the reasons I’m so relieved about this good scan is it means we keep on my same regimen for the next two months. I will be on known, predictable treatment through the holidays. Last year I had a scan on the same day, actually, and moved to a new regimen. That one was incredibly hard on me – we had to reduce my dose because of how poorly I tolerated it and I was pretty miserable through my daughter’s winter break. I remember how sad I was thinking that Christmas might only be downhill from here, and instead this year I am on track to feel even better. I am so grateful for the gift of quality time with my family.

I also get to keep up my half-marathon training! Yesterday I did 6.5 miles and the long runs are continuing to feel great. I’m going to ask at my young adult advisory board is anyone else is planning on running the race, as I think it would be fun to set up a team so we can have matching bibs.

Chemo continues on schedule for this week, so I am off to get some more fun things done in the part of the week where I feel better!

Unequivocally Good News!!

I just got home from the oncologist’s office where I got my scan results and they’re really good! No new cancer, nothing grew, and in fact several tumors shrunk. It has been a very long time since I’ve been able to share an update like this and it feels so good to do so.

I also have to comment on how much better the experience was than at MD Anderson. There I always spend at least half an hour in the waiting room before being brought to a room where I will also spend at least half an hour waiting for the doctor. That whole time I am alone and my spine is hot with fear. Today I saw my oncologist in the hallway while I was checking in and she let me know right away that the results were good so I didn’t have to wait and worry. My husband was there with me to celebrate. I was back at my house within 15 minutes. I am so appreciative of how great today was.

Weekly Update #31

Last week was scan week. The results were pretty meh. Two things in my lung got a tiny bit bigger, though everything else in my torso stayed stable. It’s not really much more cancer, but it makes it clear that my current regimen isn’t keeping me stable, so it’s time to move to a new one. I met with my oncologist today and we finalized the plan – I’ll stay on one of my drugs, Irinotecan, and add in a new one, Cetuximab. The latter is a biologic which is nice because it doesn’t come with the same chemo side effects, but unfortunately it does come with one big one – acne-like rash on my face, neck and chest. Nearly everyone on the drug gets the rash, and there is evidence there’s a relationship between the rash and my response to the drug so unfortunately I want it. I am pretty bummed about it – all my side effects so far have been things I can choose whether to share or not, this will be my first publicly visible one. I’ll be getting some medicines and creams to help manage it, so hopefully it won’t be too bad.

The other thing we saw on that scan is that there is potentially a new metastasis in my sacrum. I was diagnosed because of tail bone pain – the tumor must have been pushing on it because as soon as I started radiation/chemo and it shrank the pain went away. So, while we are going to do more imaging to verify, I am pretty comfortable assuming that this is a new bit of cancer. The chemo will help, but I’ll also do some more radiation to address it.

One thing I enjoyed about this visit was the difference in how the doctor there presented the information to me. Historically MD Anderson writes my treatment plan and my local oncologist executes it. This time around it was clear from the way the doctor spoke that my new local oncologist is the alpha – he had some ideas he was going to email her, but that she’d make the final decision because she’s the expert. I feel so so good about my decision to switch local oncologists. And, I’ll be able to do my scans at home in the future and cut out these bi-monthly trips to Houston. The drives have been getting physically hard/exhausting, so I am not at all sad to give them up. I’ll still maintain a connection with MD Anderson, but Livestrong Cancer Institutes is definitely my main office now.

Overall I feel surprisingly okay about the news. I’ve been able to frame it as information about how I’m responding to this drug and that has been really helpful. Based on the genetic profile of my tumor we have reason to believe I will respond well to this new regimen, so I am ready to get started and give it a try.