I meet with Dr. Tanaka again today.
Our discussion was about what happened with my second opinion in San Diego.
I told him about Dr. Lowy's suggestion of surgery. Dr. Tanaka agreed.
He wants me to meet Dr. VJ Khatri -- a UC Davis Cancer Surgeon -- Dr Khatri is who Dr. Tanaka suggests to get my surgery done by.
Dr. Tanaka told me that he wants Dr. Khatri to review my case and make judgment if the surgery would be possible. Dr. Tanaka told me it would look promising.
We discussed my options
First and foremost; the newest item that has come into play is whether or not these tumors are tumors or enlarged inflamed lymph nodes.
I asked Dr. Tanaka how long a lymph node would say inflamed because if they are just inflamed, they have shown up on EVERY scan since June.
However, Dr. Tanaka told me that I was asking the wrong question. I should not be asking how long lymph nodes stay inflamed, but I should be asking why they are inflamed!! He told me that if they are not tumors and they are inflamed lymph nodes, we need to figure out why they are inflamed.
If they are inflamed lymph nodes, that means I might not have cancer but I could have Crones disease or Colitis
Crohn's disease or Colitis
Definition
Crohn's disease is a form of inflammatory bowel disease (IBD), which involves ongoing (chronic) inflammation of the gastrointestinal tract. Crohn's-related inflammation usually affects the intestines, but may occur anywhere from the mouth to the anus (the end of the rectum).
See also: Ulcerative colitis
Alternative Names
Inflammatory bowel disease - Crohn's disease; Regional enteritis; Ileitis; Granulomatous ileocolitis
Causes, incidence, and risk factors
While the exact chain of events that lead to Crohn's disease is unknown, the condition is linked to a problem with the body's immune system response. Normally the immune system helps protect the body from harmful substances. But in patients with Crohn's disease and other types of inflammatory bowel disease (IBD), the immune system can't tell the difference between good substances and foreign invaders. The result is an overactive immune response that leads to chronic inflammation. This is called an autoimmune disorder.
There are five different types of Crohn's disease:
• Ileocolitis is the most common form. It affects the lowest part of the small intestine (ileum) and the large intestine (colon).
• Ileitis affects the ileum.
• Gastroduodenal Crohn's disease causes inflammation in the stomach and first part of the small intestine, called the duodenum.
• Jejunoileitis causes spotty patches of inflammation in the top half of the small intestine (jejunum).
• Crohn's (granulomatous) colitis only affects the large intestine.
A person's genes and environmental factors seem to play a role in the development of Crohn's disease.
The inflammation related to Crohn's disease frequently occurs at the end of the small intestine that joins the large intestine, but it may occur in any area of the digestive tract. There can be healthy patches of tissue in between diseases areas. The ongoing inflammation causes the intestinal wall to become thick.
The disease may occur at any age, but it usually occurs in persons between ages 15 and 35. Risk factors include a family history of Crohn's disease, Jewish ancestry, and smoking.
www.webmd.com
Crohn's disease is a form of inflammatory bowel disease (IBD), which involves ongoing (chronic) inflammation of the gastrointestinal tract. Crohn's-related inflammation usually affects the intestines, but may occur anywhere from the mouth to the anus (the end of the rectum).
See also: Ulcerative colitis
Alternative Names
Inflammatory bowel disease - Crohn's disease; Regional enteritis; Ileitis; Granulomatous ileocolitis
Causes, incidence, and risk factors
While the exact chain of events that lead to Crohn's disease is unknown, the condition is linked to a problem with the body's immune system response. Normally the immune system helps protect the body from harmful substances. But in patients with Crohn's disease and other types of inflammatory bowel disease (IBD), the immune system can't tell the difference between good substances and foreign invaders. The result is an overactive immune response that leads to chronic inflammation. This is called an autoimmune disorder.
There are five different types of Crohn's disease:
• Ileocolitis is the most common form. It affects the lowest part of the small intestine (ileum) and the large intestine (colon).
• Ileitis affects the ileum.
• Gastroduodenal Crohn's disease causes inflammation in the stomach and first part of the small intestine, called the duodenum.
• Jejunoileitis causes spotty patches of inflammation in the top half of the small intestine (jejunum).
• Crohn's (granulomatous) colitis only affects the large intestine.
A person's genes and environmental factors seem to play a role in the development of Crohn's disease.
The inflammation related to Crohn's disease frequently occurs at the end of the small intestine that joins the large intestine, but it may occur in any area of the digestive tract. There can be healthy patches of tissue in between diseases areas. The ongoing inflammation causes the intestinal wall to become thick.
The disease may occur at any age, but it usually occurs in persons between ages 15 and 35. Risk factors include a family history of Crohn's disease, Jewish ancestry, and smoking.
www.webmd.com
Nevertheless, since we do not know, Dr. Tanaka was going to have my case go over to Dr. Khatri to see if he would do the surgery. Dr. Tanaka discussed my surgery options
Option 1:
The surgery might not be possible because the tumors might be too small – this is something that Dr. Khatri would have to determine. However, if he determined that the tumors are too small, I would have to wait until mid-October to get another CT scan to determine if the tumors are gaining growth. Dr. Tanaka told me that he would also start me on a Sandostatin shot. The Sandostatin shots would suppress the cancer and the tumors. A Sandostatin shot is like a form of chemotherapy, however, I would have to give the daily shots to myself. Dr. Tanaka warned me that less than 15% of people react to the Sandostatin shots.
Sandostatin shots are given to people before they are given chemotherapy. The shot is the first line of defense to try to shrink the tumors. However there are side effects from taking this shot.
The side effects that I could encounter are severe diarrhea, gallstones and vomiting
I would have to give the shot to myself 3 times a day for many months!
Option 2:
Dr. Khatri agrees to do the surgery. Dr. Khatri goes into my body and removes the 8 lymph nodes, tissue around the nodes and part of my intestines (not sure how much of my intestines he would have to take).
However the outcome of the surgery could go 2 ways.
Outcome of Surgery Option A
The surgery could be performed and we found out that the tumors are non-cancerous.. This would be a good thing!
Outcome of Surgery Option B
The surgery could be performed and we found out that the tumors are cancerous.
In this case, the doctors would be encountering an interesting problem with me. Being that my cancer is rare and uncommon, there is not much research on the treatment to cure this cancer.
Dr. Tanaka told me that we could then go use the Sandostatin shots, but that might not be the best treatment as well.
Dr. Tanaka then took me to the National Comprehensive Cancer Network (www.nccn.org) and looked up the National research on Neuroendricrine Cancer.
According to the NCCN Practice Guidelines in Oncology –V.1.2008 the Neruroendocrine Tumors/Carcinoid Tumors Clinical Diagnosis would be as follows:
Appendix Adbdominal/Pelvic CT less then 2 cm and confined to the appendix simple appendectomy 3 month postesection including H&P and Makers and CT/MRI
Dr. Tanaka has done all of this with me. However, the chart also states that there should be no metastasizing (spreading of the cancer) – this is when it gets concerning because if the 8 tumors are cancerous, this means that I have metastasized. If this happens, this would put me in the category of what Dr. Tanaka would call an “outlier”
I asked Dr. Tanaka about receiving a form of chemotherapy. Dr. Tanaka then told me news I didn’t really want to know.
Dr. Tanaka told me that there is no form of chemo that can cure this cancer. Dr. Tanaka told me that there needs to be a chemo program to effectively cure my cancer. However, according to Dr. Tanaka, chemo has not been established for a metastatic caricoid tumor, there are only trial drugs – Bevacizumab and Avastin.
Bevacizumab/Avastin
Examples
Generic Name Brand Name
bevacizumab Avastin
How It Works
Bevacizumab belongs to a group of drugs known as monoclonal antibodies. It blocks a protein called vascular endothelial growth factor (VEGF) that helps cancer cells grow and multiply. Bevacizumab inhibits the ability of the cancer to form and grow new blood vessels. Bevacizumab is an intravenous (IV) drug.
Why It Is Used
Bevacizumab is used with fluorouracil, leucovorin, and irinotecan (IFL) to treat metastatic colorectal cancer. For lung cancer, it is used with carboplatin and paclitaxel.
How Well It Works
When used to treat some cases of metastatic colorectal cancer, the combination of bevacizumab and IFL may slow tumor growth. People in one study who were treated with bevacizumab and IFL survived an average of 5 months longer than people who did not receive bevacizumab.1
Bevacizumab combined with carboplatin and paclitaxel has been shown to help people with advanced non-small cell lung cancer live longer.2
Side Effects
Bevacizumab can cause serious side effects, including:
• Holes in the colon (perforation) that may require surgical repair.
• Bleeding in the lungs, when the medicine is used with chemotherapy for lung cancer.
• Stroke.
• Heart failure.
• Blood clots.
Other side effects can include:
• Delayed wound healing.
• Kidney damage.
• High blood pressure (hypertension).
• Headache.
• Loss of appetite.
• Mouth sores.
• Diarrhea.
• Weakness and fatigue.
See Drug Reference for a full list of side effects. (Drug Reference is not available in all systems.)
What To Think About
Bevacizumab should be administered only under the supervision of a medical oncologist.
Bevacizumab may cause birth defects. Do not use this medicine if you are pregnant or wish to become pregnant or father a child while you are taking it.
Bevacizumab has been approved for use only by adults. There is no specific information comparing use of bevacizumab in children with use in other age groups.
Generic Name Brand Name
bevacizumab Avastin
How It Works
Bevacizumab belongs to a group of drugs known as monoclonal antibodies. It blocks a protein called vascular endothelial growth factor (VEGF) that helps cancer cells grow and multiply. Bevacizumab inhibits the ability of the cancer to form and grow new blood vessels. Bevacizumab is an intravenous (IV) drug.
Why It Is Used
Bevacizumab is used with fluorouracil, leucovorin, and irinotecan (IFL) to treat metastatic colorectal cancer. For lung cancer, it is used with carboplatin and paclitaxel.
How Well It Works
When used to treat some cases of metastatic colorectal cancer, the combination of bevacizumab and IFL may slow tumor growth. People in one study who were treated with bevacizumab and IFL survived an average of 5 months longer than people who did not receive bevacizumab.1
Bevacizumab combined with carboplatin and paclitaxel has been shown to help people with advanced non-small cell lung cancer live longer.2
Side Effects
Bevacizumab can cause serious side effects, including:
• Holes in the colon (perforation) that may require surgical repair.
• Bleeding in the lungs, when the medicine is used with chemotherapy for lung cancer.
• Stroke.
• Heart failure.
• Blood clots.
Other side effects can include:
• Delayed wound healing.
• Kidney damage.
• High blood pressure (hypertension).
• Headache.
• Loss of appetite.
• Mouth sores.
• Diarrhea.
• Weakness and fatigue.
See Drug Reference for a full list of side effects. (Drug Reference is not available in all systems.)
What To Think About
Bevacizumab should be administered only under the supervision of a medical oncologist.
Bevacizumab may cause birth defects. Do not use this medicine if you are pregnant or wish to become pregnant or father a child while you are taking it.
Bevacizumab has been approved for use only by adults. There is no specific information comparing use of bevacizumab in children with use in other age groups.
So Dr. Tanaka told me not to worry about it until Dr. Khatri reviews my case and we would make decisions about my treatment after my review.
At 11:45am Dr. Tanaka left to go speak to Dr. Khatri at the UC Davis Tumor Board to review my case.
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