Oregon family

Just a quick update here to say that my mom has now been on Ivosidenib/Tibsovo since the end of May last year, and her scans have been stable in that time. Her side effects have been pretty minor: a somewhat more reactive gut than she used to have, and a bit of dizziness (I think this was more prominent early on in the treatment) in the hours immediately after taking the pill.

In our occasional check-ins with Dr. Kelley at UCSF, she says that ialthough Tibsovo doesn’t have a very impressive response rate on average, it does have what she calls a “long tail” (e.g. a small percentage of patients for whom the drug’s effects are durable over a long period). So if you are a patient with an IDH1 mutation or someone you love is, the drug is certainly worth trying.

It sounds as if there is at least one other promising IDH1-targeted drug currently going through clinical trials that they hope will prove more effective for a larger number of patients. Fingers crossed.

Thanks Mary! I will encourage my family to look into radiation as well!

-H

An update:

In late February, almost exactly a year after her surgery, my mom had a CT scan showing some growth in a couple of portacaval and periportal lymph nodes, and a suspiciously large axillary node (the doctor, at the time, told us not to worry about the axillary node until we’d figured out the more liver-local nodes). As we sought to figure out our next steps we were first thrown off track by an insurance glitch and then by the onset of COVID stuff. As a result it was not until the end of March that we finally got a PET scan, which wound up not telling us much except that, yup, those nodes all still lit up. We still needed to confirm that they were actually harboring cancer and not just ‘reactive,’ however. In early April we got a guided endoscopic biopsy of the periportal node and indeed, it was positive for cancer. At this point, we started reaching out to our various contacts, who recommended that we get another CT scan and that suspicious  axillary lymph node tested, and start thinking about our treatment plan. Those tests happened last week, and today we learned that the right axillary node also tests positive. The good(?) news, however, is that the newest CT scan seems to show nothing else of note. A little growth in these nodes, but still no primary tumor, no other suspicious stuff going on. This actually does feel minor key miraculous given that it’s now been 2.5 months since that Feb CT scan. The other (definitely) great news is that my mom has no symptoms at present – she’s jogging most days, eating well, gardening, and planning camping trips with her wife.

We’ve been kicking around possible treatment plans for the past couple of weeks, thinking (variously) about returning to gem-cis, which my mom did really well with last time (although it really started to wear her out after 10 cycles), gem-abraxane, possibly an immunotherapy or targeted clinical trial, or, as all the docs kept returning to, ivosidenib. This last drug is not yet approved for cholangiocarcinoma, but phase III trials demonstrate efficacy in patients with IDH1 mutations, and it should be approved within months. Our care team at Providence in Portland is requesting a compassionate use exemption to allow her access to the drug. Hopefully we should hear back within a couple of weeks.

I will admit I have some anxiety about the treatment, given that it typically doesn’t “knock the cancer back” the way the chemos are sometimes capable of doing (as measured in tumor shrinkage). Some dumb part of me just really wants to knock the bejezus out of those cancer cells while they’re few, even though rational me knows it won’t actually cure her, since we know the cancer is circulating now systemically. But ivosidenib does have a meaningful record of achieving sustained stable disease. We’ve been told by Dr. Kelley down in UCSF that in patients who respond well to it, the drug can hold the cancer at bay for long stretches. I think for my mom, it is also encouraging news to hear that it is often well-tolerated, with few side effects. I hope that both of these will be true for her.

So, fingers crossed that the drug company lets us at their fancy new drug in a timely fashion.

I also keep wondering whether there are other options we should also be considering, whether radiation would be useful (assuming we’re able to hold the disease stable for a while?), etc.

If anyone has thoughts about any of this, experience with lymph-node-only recurrence, experience with ivosidenib, etc., I’m all ears. I’m also just putting this here in case others find themselves in similar circumstances and are haunting the discussion board running key word searches, as I’ve so often done.

-Hannah