I will post this story here and post a more abbreviated version on another forum with questions. So here goes.
June 18, 2011 I went to a Financial planners dinner where I ordered stuffed pork chops and drank two glasses of merlot. It did me in. I was having chest pains all night and into the next morning. Thinking it might be a heart attack I went to the hospital where I was diagnosed with acute pancreatitis. Three days later I was released and told to watch what I ate. I was not too good at this so I was in pain often. A week or two later I experienced angina. Within a few days I had a stent in my left heart artery. Over the next eight months I had numerous tests (an EGD which revealed Barrett’s esophagus, a CT scan which was basically negative, ultra sound and finally an ERCP revealed incomplete pancreas divisum). My doc didn’t know what to do about that so he referred me to doctors at Froedert hospital in Milwaukee. It then became evident that the cause was slightly more complicated. After an MRI, another CT and biopsy of some neoplasms in my liver we were now dealing with neuroendocrine cancer in my liver that had metastasized from someplace else in my body. It is likely that it came from my pancreas but objectively there is no evidence of a tumor there from the scans that were done. The octreotide scan did not prove very useful as my cancer is largely ocreotide negative. So I began chemo with etoposide and carboplatin. After a month of this therapy I had another CT scan that revealed the tumors were still showing progression. I switched my therapy to Gemzar and Irinotecan. After a month of that another CT scan revealed more progression of the tumors. Results of the Target Now process of molecular profiling set the stage for the next round of chemo with 5-FU and Irinotecan.
FOLFIRI was partially successful in that it stabilized the cancer spread but it did not seem to cause any remission. It was also the hardest of the three chemo cocktails. The main issue was fatigue and chronic hiccups.
Yittrium-90 Radio embolization came next. This treatment is performed by an interventional radiologist. Millions of tiny beads irradiated with Y-90 are injected into my liver where they attempt to cutoff blood supply to the tumors. Finally some success! I underwent two treatments of Y-90 commercially known as Therasphere spaced about a month apart. They do one side of the liver at a time. The CT scans revealed a reduction in size and necrosis for most of the tumors. After a few months of waiting it was decided to try Chemo embolization. This procedure is similar in approach to the radio embolization but a chemo drug is used instead of the Y-90. I found this procedure more painful than the Therasphere. The side effects are similar to acute pancreatitis plus some nausea and fatigue.
About Thanksgiving of 2012 I started noticing increased fatigue in my legs and a higher level of neuropathy. After a PET scan and numerous X-rays and MRI’s it was determined that I have a cervical spine problem involving mostly C-5 but there are other degenerative problems as well. After a second opinion by another neurosurgeon I decided to go ahead with the surgery. Four level cervical fusion (C3-C7) was performed. The docs say the cancer is not related.
One of the things I’ve found out since this surgery is that one of my major spine symptoms was a sensation when tilting my head forward. At the time I referred to this as a “stinger” because it felt something like an electrical shock to my body. I’ve since found out that this symptom has a name. It’s called Lhermitte's sign. It is a classic symptom of Multiple Sclerosis and other things (like cervical spine injuries such as mine).
Another discovery made by the PET scan was that we finally have objective evidence that the primary tumor is in my pancreas. My oncologist and the surgeon both agree however that my cancer is beyond resection.
On the cancer side, I had a good scan in July that indicated most of the tumors in my liver continue to shrink and/or are undergoing necrosis. The pancreas remains the same with sporadic pancreatitis. I’ve found that eating carefully right through them is as effective as not eating.
Next on the agenda are octreotide injections. Octreotide has the ability to attach itself to the tumor and halt or slow its growth. I must undergo a test to see if I’m eligible for this therapy. Basically I get an octreotide injection and then get tested for chromogranin a in my blood at 0, 3 and 6 hours. If the chromogranin decreases during this time I should be eligible.
It appears that my condition as being octreotide negative must also mean that I’m octreotide injection ineligible as well. So after a month or two of doing nothing on the cancer front I developed a TMJ problem and a pain in my left side below my breast. My oncologist advised I see a dentist for the TMJ. The dentist and my primary doc passed off the breast pain as a side effect of finasteride pills. Both were quite wrong as the cancer had now metastasized to my bones. There’s a tumor in the TMJ which is fractured and my fifth rib also has a tumor. After a MRI it was also found to be in my spine at T5, T8 and T12. I had a biopsy on the rib and they did a cryoablation procedure on the rib as well.
It's time to get a second opinion from the doctors at MDAnderson cancer center in Houston. They could offer nothing but some Phase I trials. I didn't think I was ready for that just yet, let's try Sutent. At first we didn't think it was working but after two cycles we saw some decrease in the rate of growth so hang in there.
Now I think that since the cancer has metastasized to my bones my oncologist is thinking more palliative than curative. Well, after one more Sutent cycle the cancer seems to be progressing on almost all fronts. Let's see what's going on at University of Chicago Medical Center. Basically the same was said there. Phase I clinicals was my best bet but first get some radiation done on the bones.
My physical condition has deteriorated significantly this year. Overall the neck surgery was only partially successful. My stingers are gone but the pain in my lower body, starting at my buttocks is significant. Some days the tightening of my muscles around my spine is a signal to me that it will not be a good day. Other days I can make it through most of the day but by late afternoon or early evening I need some help from oxycodone. 5 or 10 mg usually does it but some time that does not even help. Sleep is the best remedy. Fatigue is totally unpredictable. I can be fine one minute and hopelessly tired the next. Some days I think I can sleep 20 hours. Other days I might be fine with just 8.
TMJ radiation is done. The pain I'm now having is coming from some fractured ribs and a fractured T8 vertebra. I’m not sure exactly what causes the pain. It is likely the surrounding tissue that causes it.
Moving ahead, we contacted the Pancreatic Cancer Action Network and they provided a list of eight possible clinical trials. After review with oncologist it was decided to try a Phase II trial at the Dana Farber Cancer Institute in Boston. The trial involves the drug cabozantinib. This drug has been successful in treating Renal Cell Carcinoma. The manufacturer is seeking to expand use into my type of cancer. The doc there says that my cancer may be too high grade for the trial but needs more time to evaluate my biopsies and scans. She also said my cancer may be better treated with a new protocol called CAPTEM. So we are now in a waiting pattern to see what comes next.
I titled this story "My Neuroendocrine tumors are rare" because they seem to defy all of the normal treatments and a solution seems so elusive.
It's a long and painful road as most of you already know. One day at a time. I often take time to smell the roses and thank God for all those in my family and friends that support me.
"Not all those who wander are lost" - J.R.R. Tolkien