• Karen

Keytruda cycle 22 & some not-so-good news

A favorite stand of saguaros near Honey Bee Canyon

Well, it turns out that David’s rising CEA tumor marker and the lymph nodes that looked a bit larger on previous abdominal CT scans weren’t just a fluke. David had another CT scan on March 1, and he saw Dr. Brooks on March 4 to discuss the results and to get his 22nd dose of Keytruda. Two lymph nodes in the lower abdomen near David’s kidneys are definitely getting larger, and Dr. Brooks said he believes it’s the cancer growing again. There's no other viable explanation. Also, these are some of the lymph nodes were cancerous back when David was first diagnosed in Nov. 2018, so Dr. Brooks said it could be that not all of the cancer cells were killed by the chemo and the Keytruda immunotherapy, and the cancer been growing for a while.

Dr. Brooks said it’s time to plan what to do differently to fight the cancer. David will have a brain MRI on 3/15, and Dr. Brooks wants to see the results of that before deciding what to do. In the meantime, he told us about a phase 2 clinical trial his group at Arizona Oncology (AZO) is doing and a phase 1 trial that another group at AZO will be doing soon. He also mentioned a pill David could try. An AZO researcher gave us about 50 pages of info to read about these options. There are pros and cons for each.

The drug that will be used in the phase 2 trial in Dr. Brooks’ group had patients who had success with it for a different type of cancer (bladder, I believe) during its phase 1, so this second phase is to see if it helps with other cancers.

The phase 1 trial in the other AZO group is targeted towards the HER2 receptor, a gene that David has. So it might be effective for him, but we’d need work with a different oncologist and go to his location across town if we decide to go that route. Also, we aren’t sure yet how soon that trial will start, and since it's a phase 1 trial, it'll be the first trial with that drug that involves people. According to, "Phase 1 studies are done to find the highest dose of the new treatment that can be given safely without causing severe side effects." The goal is different for phase 2 trials: "If a new treatment is found to be safe in phase 1 clinical trials, a phase 2 clinical trial is done to see if it works in certain types of cancer." Placebos (inactive treatments) are not used in either type of trials.

The third option is a chemo pill that I think Dr. Brooks said was related to a chemo drug David took via IV two or three times but had to stop due to an allergic reaction. (It was difficult to clearly hear everything he said, because I was listening over the phone while he talked with David in his office.)

All of the options are likely to have side effects (fatigue, low blood counts, and rash were mentioned) and, of course, there are no guarantees with any of them.

There might be other trials, for example, in Phoenix, but we haven’t explored that yet. Also, we want to understand more about the process for participating in a clinical trial. There are strict requirements, because the researchers need to be able to accurately document the outcomes. So we need to read the info we were given on these options, look more at the info on about clinical trials, and search for other clinical trials.

It’s up to us to decide which route we take; until this point, we’ve been able to rely on Dr. Brooks’ experience, expertise, and recommendations, but now it seems that the burden is mainly on us to decide what to do. Dr. Brooks said he would support any of the options, but there’s no way to know which would be best.

Needless to say, this is disappointing news and choosing the next step seems daunting. But we’ll do our homework, try to choose what seems best, and keep you posted as we learn more. In the meantime, we're trying to keep a positive outlook. I am reminded of a man named Brad who attends a cancer support group that David has been attending in our neighborhood. Brad is in his 80s and has recounted several stories of having various kinds of cancer, recovering, and then having other types of cancer crop up. So, having a recurrence is not necessarily the end of the line.