Changes and Adjustments

Hi all,

Once again it’s been a while since I posted a blog.  We’ve had some scans and tests and a lot of hard conversations that have shifted our focus.

Here’s Doug’s version with a few edits and add-ins from DonnaLee.

Last week, Sept. 12, we met with Dr. Bonomi and Irene for a brain scan and regularly scheduled visit.  The brain scan remained favorable, but DonnaLee’s day-to-day health has continued to deteriorate.  This means that the scan is not telling us the whole story and the current treatment is not working well.  The difficult part of this news was that there are really not great treatment options to try next.  We took this news and agreed to think about options for a follow-up appointment one week later.  We would also speak with a palliative care doctor regarding pain management, digestive issues and general comfort stuff to help DonnaLee.

Monday Sept. 19 we met with Dr. Bonomi and Irene and jointly decided to try a different treatment, immunotherapy.  This treatment uses the body’s own defenses to attack the cancer.  Typically, DonnaLee’s type of cancer with her specific EGFR mutation does not respond as well to this therapy as some other cancer mutations.  However, given six years and several treatment paths her cancer may have mutated more and be responsive to the treatment.  With a lack of material side effects and very little downside risk we decided to give immunotherapy a try.

Next week DonnaLee will have a scan of her lower back (in the meningeal fluid floating through the spine) to provide a base line reading similar to last week’s brain scan.  The immunotherapy is a one-hour infusion every two weeks.  In the meantime, we get an eight week break from further scans. Interim progress will be judged on tumor markers in the blood.

The palliative care doctor had many suggestions, but no concrete solutions for DonnaLee’s more nagging issues.  We are entering a period of uncertainty with the new treatment, exchanging our current slow deterioration for long odds of success.  There is a lot of “wait and see” and “day at a time.”

On a lighter note, last Saturday’s Lung Run was a great success with Team DL raising over $5,000.  We enjoyed a beautiful day for our seventh year participating in this event with about 20 other Team DL runners, walkers and supporters.  We could feel a glow of happiness for a day or two after.  We remain thankful for and humbled by everybody’s love and support.