We haven't posted in awhile, in part because there haven't been many events of the sort that naturally trigger a post. And when people ask us how things are going on the new trial, it hasn't been easy to give a short summary. But this week the summary word came to me: Stable-ish.
This past Monday was scan and electrocardiogram day. On Wednesday we met with one of the doctors. (Dr. Lakhani is on vacation, so we met with one of the other doctors at the clinic this time.) There are a number of nodules that they are watching to measure the amount of disease progression. Several of them are slightly larger (~ 1mm larger) than in the scan 6 weeks ago. That classifies the situation as "stable", which means Penny continues with the study for another 6 weeks. There is some noise to these measurements (basically because the nodules are not spheres and they get measured at slightly different angles each time). On the other hand, if this were true measurement noise, we would expect some to get smaller by a millimeter or two and others larger.
One thing that points to possible improvement is the CEA blood tests. This was a very good predictor of progression while Penny was on chemo, falling while she was on chemo and rising when she had pauses. Immunotherapy can disrupt CEA, so we haven't been paying attention to it much lately. But it has dropped a bit while on the new treatment. We don't have enough of a track record in the new regime to know exactly how to interpret that yet. But "better down than up", as the doctor told us on Wednesday.
So stable-ish.
The study drug is taken orally twice each day, so there isn't the same sort of weekly or bi-weekly rhythm like we had with the previous immunotherapy and chemotherapy. The main symptoms have been fatigue, light nausea (Penny calls it queasiness to distinguish it from the nausea associated with her chemotherapy), various intestinal issues (but no blockages), headaches, and just generally feeling "off". All of these come and go and are not very predictable. It also isn't clear which are directly attributable to the medication, which to the medications to prevent side effects, which to the cancer, and which to downstream things, like becoming dehydrated. Overall, despite the side effects and their unpredictableness, the patient experience is still better than when on chemotherapy.
All in all, not a lot of news at the moment. There isn't a strong signal yet about how effective the treatment is -- but true stability that persists over time would be a win -- and we aren't likely to know anything more for at least another 6 weeks.
In the meantime, we proceed as we have for the last 6 weeks.
Comments
Laura DeHaan: Prayers for continued stability and peace for all of you.
Herm De Vries: Thanks, as always, for these updates, Randy and Penny. Hoping and praying that you will stay this stable course and that the nausea will diminish.
Teri Warners: Now that really warms my heart! Thanks to both of you!
George Monsma, Jr.: Thanks, Randy. Praying for continued stability, or for shrinkage.
Teri Warners: So thankful that things are better than when on chemo. Continued prayers that treatment holds back the cancer. Thanks, Randy, for sharing your musical gifts today in church. Even listening from afar (Zoom), it was a balm for my soul.
Randall Pruim: Your welcome, Teri. That was Penny on the piano today, too.
Patricia Boer Fischer : Still Prayin 🙏4Y'all.. Prayin 4Stability & Shrinkage 2, Thank-U So Much 4the Updates on Penny 💕😘 Sendin Ya's Loooong Distance Hugg's from Tennessee 2Y'all.. Tricia Fischer 💕
Pamela Plantinga: Thanks for the update, Randy. We hope and pray for a similar report of stability in 6 weeks, and long beyond that.
Glen Boer: Keeping you all in my daily prayers
Alisa Tigchelaar: Praying this morning for true stability that persists over time, Penny and Randy. And for peace as you move forward into another six weeks of treatment. 💕