We are approaching 3 weeks without a trip to the hospital. It feels like it has been a long time since things were this "normal". But just because we aren't in the hospital doesn't mean there aren't still doctors to see...
Tuesday -- Radiology. Last week Tuesday we met with a radiologist. It isn't possible to treat most of the cancer with radiation without doing more harm than good, but it may be possible to target a small area near where the most recent blockages have been occurring in an attempt to make future blockages less likely or less frequent. Most likely this would involve daily radiation treatments for two weeks.
However, radiation is an exclusion criterion for the current clinical trial.
Thursday -- Oncology. At the weekly oncology check-in last Thursday with Dr Lakhani, we decided to wait until the next set of scans and see where things are at that point. That should give us a better idea whether the current treatment is actually helping. The success rate for the current treatment is pretty low (about 5%), but it seems worth giving it enough time to see if is having any effect, especially since things have been more stable the last couple weeks.
One option at that point would be to discontinue the current clinical trial, do the radiation treatment, and then start a new trial.
Friday -- Ophthamology. Penny has been having issues with her eyes the last couple weeks. This is a possible side effect of the current treatment. Last Friday she was prescribed two different sets of drops to calm the irritation/inflamation. We'll check in again in a couple weeks.
Monday -- Cardiology. This appointment was just a routine stop for an echocardiogram. These are scheduled frequently as part of the clinical trial protocol. Apparently the type of drug used in this study can damage the heart, so it has been modified to disrupt a particular binding site to prevent this. The echocardiograms are to make sure this modification is actually working as desired. So far, no issues have been detected.
Dermatology. Starting about 10 days ago, Penny has been having some skin irritation (itchiness, mostly). She's taking an antibiotic for a possible skin infection and is being referred to a dermatologist. Again, this is potentially a side effect of the treatment.
Nutrition(ology?). Penny hasn't been regaining weight, and in fact set a new record low a couple days ago. She's been referred to a dietician/nutrition(olog)ist to see if they have any suggestions. In the meantime, she can have all the cookies and ice cream she wants. (That sounds better than it is.) And calorie rich protein shakes have become a part of the daily rhythm.
Thursday -- Oncology. This Thursday will be another infusion day. That will include a check-in about all the symptoms and the various ologists being consulted.
In between all the ologist appointments, Penny is back to work at Calvin. She's also been leading a 3-week education workshop for our church. If she leads the third session this coming Sunday, it will be the first time she's made it to church 3 weeks in a row since July. So we are thankful for the relative stability of the last couple weeks... and for all the ologists who help manage Penny's care.
Comments
Jane Warners: Yea! Continued prayers for “stable” as well as complete healing. Thanks for the report, Randy.
Marie VanderLinde : You both are so courageous. Praying for healing, grateful for the stability.
Talon Rindels : Aunt Penny, your strength and perseverance is truly inspiring! It’s unprecedented that you have found the energy to continue to support the betterment of Calvin students and your church community. You really are an inspiration for all! ❤️
Mary Hulst: Grateful for all of these professionals who can contribute their expertise. Praying for relief, strength, and good eating.