Today was quite a busy day for cancer stuff…
First I met with a Physician’s Assistant for bladder cancer pre-op evaluation. Had blood and urine tests and EKG. In return, I gave her this paper:
I have Carcinoid Cancer. Among other things, this means that I could experience Carcinoid crisis during invasive procedures, stress, or anesthesia.
Carcinoid crisis is when all of the symptoms of carcinoid syndrome come at the same time. Carcinoid crisis is the most serious and life-threatening complication of carcinoid syndrome, and is generally found in people who already have carcinoid syndrome. The crisis may occur suddenly, or it can be associated with stress, chemotherapy, or anesthesia. It is characterized by abrupt flushing of face and sometimes-upper body, usually severe falls in blood pressure and even bronchospasm with wheezing can (infrequently) occur. The attack may look like an anaphylactic attack. In my case it probably would include bradycardia (35 bpm sometimes).
Epinephrine and pressors will provoke – not help carcinoid attacks. Do not use anesthesia drugs mixed with epinephrine.
Attached are two descriptions of protocols recommended and used by carcinoid experts.
Here at Franklin:
Dr. Anondo Paul Stangl used a similar protocol which may have saved my life when he was performing chemoembolization on me and I had a crisis.
Dr. Philip Neff and his anesthesiologist used a similar protocol when I had liver surgery last year. I did not have a crisis during the 5.5 hour procedure.
These doctors are just across the hall from urology if more information is needed.”
NOTE: please have the tumor lab tested for carcinoid as well as the more normal. Let me know of results.
I also printed Dr. Woltering’s protocol and Dr. Pommier’s protocol.
The PA was suitably impressed with the information and said that she would have an anesthesiologist assigned early and make sure that she has this information. The surgery is scheduled for next week, June 4. As I have pointed out before, this is essential to insure that a carcinoid patient survives anesthesia and stress and invasive procedures.
Later that day I met a new PA to discuss my carcinoid. She studied and approved of what I did above regarding carcinoid crisis. No changes in my treatment for now.
Then I had the Sandostatin injections that I have every four weeks.
We cannot avoid sometimes our day revolving around our cancer! Thankfully tonight is a meditation meeting.
May we all have the best possible outcomes,