January 13, 2013 – Dr. Eugene Woltering wrote this in the ACOR Carcinoid listserv:
“Our latest data on 227 surgeries in 177 folks with stage 4 disease (everybody had tumor spread to liver or other organs other than primary site and nodes-obviously the difference in the numbers are folks who had up to 4 sets of cytoreductive surgery
survivial is from date of diagnosis and is real survival rates not progression free survival
all folks are in this compilation even folks like my mom who date started at age 90 and died at age 97— so she is in the 5 year survival group but not 10 year group
10 year— 77%
20 years —-41%
so you should expect to live an almost normal lifespan.”
This is pretty good news, except that, he was talking about people who have had their primary and metastasized tumors surgically treated. My primary has not yet been located. No tumors have been removed. My liver mets (metastases or lesions) have been treated with chemoembolization which resulted in 4 of the six mets disappearing and the other two shrinking a little. We also should note that Dr. Woltering is a surgeon and firmly believes that surgery is the best answer for NETS. Many other specialists agree, see below.
Reading the above, note that he is talking about “survival” not “progression free survival”. “Progression free” means no new tumors or tumor growth or increasing symptoms. Which brings us around to me…
For the last 3 to 4 weeks, I have had diarrhea nearly every day and the evening chills have been coming with more frequency and greater severity than I have experienced in almost a year. Although December’s scans and blood tests led the doctors to pronounce me stable, one measure: seratonin was out of the norm. I just had another blood test series (seratonin, CgA, gastrin and others) and seratonin is again out of the norm and worse.
The normal range is: 26-165 ng/ml.
6/13/12 — 136
8/1/12 — 104
9/4/12 — 128
11/19/12 — 181 high
1/23/12 — 196 high
Things may be getting worse. All other blood tests (I get a set of several) are in the normal range.
I did not understand this well before… Higher seratonin numbers probably indicate that the tumors on the liver are active. If tumors in my gut are producing seratonin we would not know because the first place the blood goes is thru the liver which cleans out the seratonin. The secretions from the tumors in the liver are not filtered by the liver and so can be measured in a blood test.
As the docs continually say: “we are looking for trends not individual numbers.” I’m beginning to think trend. I will be meeting my oncologist late next week on my normal injection appointment. We will have lots to discuss, in light of the information below as well as the info above. This past Saturday, the Neuroendocrine Carcinoid Cancer Education Association and the Colorado Carcinoid Cancer Support Group sponsored a meeting with these speakers:
Thomas O’Dorisio, MD, University of Iowa, Professor and well-known endocrinologist specializing in NETS
“Neuroendocrine Tumors: Current & Future Management at the University of Iowa”
William T. Purcell III, MD, University of Colorado, Assistant Professor and Director of the Anschutz Cancer Clinic.
“Overview of the Management of Carcinoid Tumors at the University of Colorado Cancer Center”
Both speakers agreed that surgery was the gold standard of treatment. There is data that indicates the the time to progression (time until it gets worse) could double if the primary is removed. However Dr. O’Dorisio did admit that you have to balance that with how sick surgery itself might make a patient.
Dr. Purcell’s talk was a very good overview and made me feel that my treatment was on a parallel with the University of Colorado’s team (except no surgery at this time).
Dr. O’Dorisio first covered the history of Carcinoid from the time it was named in 1904 to current. There was a lot of great info which was previously unknown to me. Then he showed various lab slides of carcinoid, so we could know what it looked like to the analyst. Further, he talked about current and future treatments and diagnostic tools. Slides from the talk are available here: Slides of Dr. O’Dorisio presentation.
Important to me because this has not been done at the moment for me:
- NI-67 test which measures the speed at which a tumor is growing. This has never been done on my tumor material but it still is held at the hospital and could be analyzed. If less than or equal 3 there is a good survival rate, if greater than 20 there is a poor survival rate. On the minus side there is some subjectivity and skill required to adequately perform this test.
- He talked about the importance of Chromogranin A (CgA) in measuring the progression of liver tumors but also talked about the test’s unreliability due to a number of factors. He recommended pancreastatin as a test to always use in conjunction with CgA and seratonin tests and showed slides that verified pancreastatin as a good indicator when CgA is not. In fact he believes that pancreastatin may be an earlier marker of activity than CgA.
- Specific studies of a substance called Neurokinin A (NKA) have been published showing that if a patient has a NKA level less than 50 ng/L the survival period twice that of a patient with NKA > 50 ng/L. Very importantly, if the NKA level can be reduced by treatment to below 50 ng/L the survival period returns to the better one. Neurokinin A levels predict survival in patients with stage IV well differentiated small bowel neuroendocrine neoplasms. and Validation of neurokinin a assays in the United States and Europe.
Dr. O’Dorisio spent much time talking about the GA-68 (gallium 68) scan that he is testing (this is new in the United States and not approved yet by the FDA but Europe has had it for a while). He showed pictures of the difference in resolution between the GA-68 scan and the octreoscan which has been used on me. It’s incredible! In fact, he says that the octreoscan has a resolution down to 11 milimeters while the GA-68 is down to 3 millimeters. Since one problem with carcinoid is that the primary tumor is often so small that neither MRI nor CT Scan nor octreoscan can find the tumor, this could be a huge step forward.
He also believes that a related technology called PRRT (Peptide Receptor Radionuclide Therapy) will revolutionize the treatment of carcinoid tumor and other NETS in the future (after surgery usually). There are a couple of people in the Colorado Carcinoid Cancer Support Group who have gone to Europe to have this treatment. They are not cured but time to progression was lengthened much farther than you would expect. It is hard for me to understand that this therapy has been available in Europe in several clinics for twenty years and clinical trials are just starting in the U.S.! What’s up with that???
Realizing that much of the stuff above is highly technical and perhaps hard to read, I publish it anyway because each patient is their own best advocate and to be a good advocate we must at least try to understand the disease and the treatment possibilities for it.