Twelve weeks have passed since my last CT scan just prior to
Christmas. On Monday I had another CT scan of
my neck, chest, abdomen and pelvis. I think that I’ve had more than 30 CT,
MRI or PET scans since I was first diagnosed with bladder cancer. This time, the actual was uneventful – the tech got my vein with the first stick. Yesterday morning, a
Kaiser oncology nurse emailed the results: “CT shows
slight increase in a chest/mediastinal lymph node. The significance of this is
not clear.” Humph. Not a useful analysis. So
I got a copy of the scans on disk and took them with me to my appointment with
Dr. Hahn at Johns Hopkins yesterday afternoon. He said that he was not worried
about the slight increase in the size of the node, since there was no sign of metastatic
activity. We both knew that the Hopkins radiologists would closely review the
images and compare them to my prior scans.
My lab work was likewise unremarkable, except for a slight
increase in alanine amino
transferase (ALT), an enzyme that measures liver function. Dr. Hahn said that
the increase was still within the normal range and didn’t see the need to take
any action at this time, but we should keep an eye on it. He suggested that I do
labs every month instead of every three months to see if the ALT level
continued to increase. All in all, these results are not bad. There continues
to be no evidence of disease. But it’s not a clean bill of health, either. So I’ll
muddle on.
Dr. Hahn and I
also talked about my recent appointment as a patient advocate on the Bladder Task
Force, which is part of NIH’s National Cancer Institute Steering Committee
program. The BTF regularly reviews proposed clinical trials relating to bladder
cancer. My job is to look at the proposals from the viewpoint of a patient – e.g.,
would this be a trial that would be attractive to a patient, as opposed to the
standard of care; what is the likelihood of a substantial benefit; how can the
investigators reduce the burdens on the patient; etc. Dr. Hahn encouraged me to
speak up and remind the MD’s and PhD’s how it feels to be on the other end of
the needle. “Sometimes researchers get caught up in the science and lose sight
of the patient,” he said.
In other news, the spring real estate market is heating up.
In the past two weeks we’ve received two offers on our house. We rejected a
lowball without bothering to counter. We’re preparing to counter another one.
We’ll see what happens. My more immediate concern is shoveling the 6-8” of
global warming that has fallen on this second day of Spring.
I found your blog as I was researching information about immunotherapy for micro-papillary cancer of the bladder, with which my husband (an ER physician) was diagnosed in March of 2017. He underwent a radical cystectomy and prostate removal (with one lymph node out of 33 positive for the cancer. He then endured several rounds of chemo. Chemo was ineffective, as we were advised it might be, and his scans have been clear until his most recent one two weeks ago. Several lymph nodes were enlarged in his abdomen, indicating a progression of the cancer.
ReplyDeleteUpon physician advise and personal research for treatments, he has decided to begin immunotherapy. Your blog has been encouraging in this respect.
I had a question, however. I saw that you mentioned having gone on a diet before the cancer diagnosis--in which you lost 50 lbs. My husband and I also went on a high protein diet months before he showed signs of blood in his urine. I wondered if you might be willing to share the name of the diet you tried? It might prove interesting to know if it was the same one we tried.
Thanks for your helpful blog. We wish you well in the years ahead.
Deborah Brown
Deborah, the diet was with the George Washington University Weight Management Program, supervised by Dr. Arthur Franks. Friend me (kbros) on the inspire.com if you want to chat more.
DeleteHi Ken! Your blog is such a helpful source out there for people at different stages of their bladder cancer journeys. A new online community, BladderCancer.net, publishes blogs & articles written by experts,
ReplyDeletepatient advocates, and bloggers like you to bring support and solidarity to people living with bladder cancer and their loved ones. Would you be interested in adding your voice to the mix? We would love to chat with you further about BladderCancer.net and how we could work together- if you're at all interested, please contact community@bladdercancer.net. Hope to hear from you soon- and take care!
Thinking about you both often, and hoping this move will bring even more wellness for you. I'm grateful with your intellectual gifts you can help the greater medical community to make progress on fighting bladder cancer. I know you'll bring that fight to whatever challenges might come your way.
ReplyDelete