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.

2 thoughts on “Weekly Update #31

  1. Commiserations on a meh scan from someone who got her first meh scan result on Wednesday, after 12 months of stable, I have some slight increase in liver lesions, but nothing new. So I too started a new regime this week, they’ve added in Irontecan to my existing treatment… so back to a longer treatment day for me.
    While I had all the feels on result/first treatment day, partly because it meant a delay in treatment and meant a full day of doctors and oncology centre, instead of my normal 1.5 half hours, I’m feeling a lot more confident now, that this is more about managing new side effects. Oncologist is confident the new regime should help me get back to stable. And the wonderful head oncology nurse supported me all day with hugs and laughs and all the practical stuff about what changes I’m likely to have going forward. And bonus brought me in a bag full of vintage knitting patterns.

    Sorry to hear about the rash, completely understand the sharing/ not sharing thing… I will have to deal with this too, as I’ve been told that I won’t have a dramatic hair loss but to expect to slowly lose most of it over the coming months… and I face the dilemma that all but my closest work colleagues don’t know that I am sick… I mostly work from home, but it is nice to go into the office and just be Vikki, and not sick Vikki.

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  2. Ugh, a longer infusion day is the pits, especially after being stable for so long!

    I’ve 12 rounds of Irinotecan and haven’t had any significant hair loss, I hope you can have the same experience!

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