Sue Weiveris, 1955-2003My Carcinoid
Story
Sue Weiveris (NoidFighter@aol.com)
Revised & Updated 2/05/03,
updated by Jim 01/07/2004
I was diagnosed with carcinoid in February 2000. I have had stomach problems since my early teens. It was always diagnosed as nervous stomach or IBS. In 1997 I started experiencing upper abdominal pain, which was unusual for me. My local gastroenterologist did an endoscopic exam and diagnosed me with h. pylori bacteria, esophagitis, and gastritis. I went on several medications and felt better for about 1½ years. In 1999 the attacks of pain returned. At that time the gastroenterologist felt it was my gallbladder. A sonogram showed that my gallbladder did not contain any stones. The doctor still felt the pain was gallbladder related. He felt I had a sluggish gallbladder and suggested I try to control it with my diet.
In January 2000, I was in his office in tears from the pain. At that point he sent me for an abdominal CT to check my gallbladder. The CT showed a normal gallbladder, but revealed numerous tumors on my liver. The CT was followed up by an abdominal MRI, which confirmed the CT results. The most common cancers to metastasize to the liver are breast, lung and colon cancers. After all tests ruled out those three, my doctor recommended a CT guided needle biopsy of my liver. The pathology report came back as positive for carcinoid. Although my primary could not be found, the cancer had metastasized to my liver and there were too many tumors to surgically remove. The largest was centrally located and measured 7.3 X 3.1 cm. The doctor who found my carcinoid suggested I have a 5HIAA (24 hour urine collection) test done to assist in determining more about my disease. My 5HIAA came back normal.
After visiting a few doctors in NJ & NY, in April 2000 I went to see Dr. Richard Warner. Dr. Warner is a gastroenterologist whose office is located in New York. He has dedicated the last 40 years of his practice to carcinoid and other neuroendocrine tumors. I brought all my x-rays and written reports for his review. At our initial consultation, he was very willing to explain in detail about carcinoid and my specific case. He reviewed all my films and reports, did a physical exam and ran numerous blood tests to determine my tumor markers. After reviewing everything, he suggested I have an Octreoscan done and explained to me the procedure called hepatic chemoembolization.
I had my Octreoscan at the end of April. It lit up my liver, but still did not show my primary tumor. In May 2000 I started on subcutaneous shots of Sandostatin® (3/day), eventually graduating to Sandostatin LAR® once a month. Once the Sandostatin® was in my system, my attacks of upper abdominal pain stopped along with other symptoms I had been experiencing but did not relate to the carcinoid. These included night sweats, diarrhea, heart palpitations, and probably some minor flushing. All of which doctors had attributed to other health issues, but they all stopped once I was on Sandostatin®
I decided to have the chemoembolization procedures done. Dr. Warner suggested we do them in three individual sessions. In July 2000, I had my 1st chemoembolization done at Mount Sinai Hospital in NY under Dr. Warner's direction. My 2nd & 3rd were performed in November 2000 and February 2001, also at Mount Sinai. Each hospital stay was approximately 5 days.
The procedures themselves were not bad at all. I was a wake for the 1st one, partially awake for the 2nd and out completely for the 3rd. I think this was solely based on each anesthesiologist's way of doing things. I had some moderate pain after the 1st procedure (upper abdominal pain - the same type I complained of when they thought it was my gallbladder) but on a scale of 1-10 (10 the worst) it was probably never more than a 6-7. The pain lasted a few days at most. I had pain medication in the hospital but rarely used it once I got home. I was mildly fatigued for a few weeks after the procedure, but was up everyday and doing a few things with rest breaks in between.
The 2nd and 3rd procedures had basically the same after effects although the pain was less with the 2nd and more with the 3rd and the fatigue lasted a bit longer each time. I think the pain issue had to do with the number of tumors there were in each section of the liver they did. In my case Dr. Warner did the section with the largest tumor the 1st time (so more pain), the 3rd time he went back and redid a few of the previous areas in addition to the third section (so that can account for the additional pain the 3rd time). The fatigue was never so debilitating that I stayed in bed all day. I was up and doing things (including business obligations I could handle from home) each day.
I understand that these procedures are done differently at different hospitals and by different doctors. As for my experience with Dr. Warner and Mount Sinai Hospital, there is not one day I regret having had the procedures done. After the 3 chemoembolizations my CT showed that the tumors in my liver were fewer and smaller. Dr. Warner then prescribed systemic chemo (low-dose leucovorin/5FU/streptozotocin) in an attempt to keep the hepatic lesions under control and also to fight off any tumors that may be starting in other areas of my body.
My systemic chemo cycle was scheduled for 12 weekly treatments, 12 treatments every other week, 12 treatments at 3 week intervals and finally 12 treatments at once a month intervals. Each treatment would take about 1 1/2 to 2 hours and be done at a local hospital in New Jersey. After the 12 weekly treatments, another CT showed almost complete resolution of all hepatic masses. I did not lose any hair or experience any gastrointestinal problems from this chemo regime. Unfortunately, in January 2002, after approximately 11 of the every other week treatments, I was experiencing a great deal of fatigue and achiness in my bones and joints. At that point Dr. Warner suggested that we cease chemo temporarily.
Sometime in the fall of 2001 or early 2002 I started having more of the attacks of upper abdominal pain again. From January 2002 through May 2002 I went through a series of diagnostic tests in an attempt to find an explanation for the abdominal pain. These tests included the usual CT scans, an Ultrasound, an Endoscopy, a Capsule Endoscopy, an Endoscopic Ultrasound, and an MRCP. The results showed a very diseased gallbladder, additional tumors in my liver, and a shadowing between my pancreas and duodenum.
On June 18, 2002 I had abdominal surgery at Mount Sinai Hospital. My gallbladder was removed along with 6 of the 7 tumors in my liver. The 7th tumor was too close to a hepatic vein to remove. In addition, we found my primary tumor on my pancreas, near the duodenum, approximately 1 1/2 inches long. This was very vascular and not well defined which also made it too dangerous to remove. A biopsy done at Mount Sinai revealed that my tumors have two separate sets of characteristics. It appears that I have gastrinoma (another neuroendocrine cancer) in addition to carcinoid. One of my liver tumors was sent to the Weisenthal Cancer Group in California to be tested for the best possible chemo agents to be used. This is a fairly new test and often the tissue doesn't live long enough for the tests to be performed. I was fortunate that enough lived for them to find 2 systemic chemo drugs (cytoxin/taxotere) which my tumor was sensitive to.
I started the new systemic chemo in August. These treatments were given every three weeks at Holy Name Hospital in Teaneck. Unfortunately, I was still experiencing the attacks of upper abdominal pain after my surgery. Dr. Warner suggested an ERCP, which revealed "debris" in the bile duct. This debris was removed during the test and a small slit was also made in the end of the duct to relieve some of the excessive constriction of the duct opening. The pain subsided for about six weeks and I continued on the cytoxin/taxotere chemo treatments. In mid November I was hospitalized for IV therapy to treat dehydration and a suspected infection. During my stay, a CT scan showed that the current chemo protocol was not working - my tumors were continuing to grow. Bloodwork revealed elevated Chromogranin A and Gastrin levels. These have been elevated in the past, but this time my Gastrin (which has a normal range of 0-90) was over 5000.
December saw the upper abdominal pain continue. In addition I was experiencing increased pain in my liver which radiated to my back and up into my right shoulder. In mid January 2003, I was hospitalized for extreme pain. Bloodwork determined that I needed a transfusion, Endoscopy showed an excessively large amount of acid activity and the latest CT scan again indicated continued tumor growth. After being released from Mount Sinai, I went to NY Hospital and had a Celiac Nerve Block procedure performed in an attempt to manage my pain.
It has been one week since the nerve block was done. I have experienced some pain, but it is manageable with the assistance of Percocet. I am also on a new medication program to control the excess Gastrin in my system and am meeting with my oncologist next week. We will most probably go back to the leucovorin/5FU/streptozotocin chemo protocol first used in 2001. So, as most carcinoid survivors know, the saga continues!! In the mean time, I continue with my business, church activities and carcinoid support group work to the best of my ability. Most of all, my husband Jim and I try our best to enjoy, to the fullest, each and every day we have been given. That is perhaps the best advice I can give to anyone.
The following update is written by Jim:
In February of 2003, Sue & I consulted with Dr. Warner and our local oncologist. By this time, we had already tried what they considered as the most likely to work chemo agents and any further chemo would be a guessing game. Sue and I have long been personal believers in the quality of life over the quantity of life and after much careful consideration, Sue decided that she would not do any more chemo treatments, a decision I supported. She would instead focus on having some quality of life, rather than the roller coaster of treatments, for as long as she possibly could. During the late winter and spring, Sue was able to enjoy some of her time, some with limits, but better than with the chemo may have been. In July, 2003 she had another Hepatic Arterial Chemoembolization done at Mt. Sinai Hospital in NYC. This time they treated nearly half her liver.
Due to her declining health, after mid-June, 2003 Sue spent all but approx. 30 days in various hospitalizations. Time at home would last from 2 days to 10 days, with varying quality. She was experiencing more pain, as the celiac nerve block, which had worked very well, wore off as nerves regrew (an expected process called nuerogenisis) and again began to pass pain signals. She used numerous oral medications to control the pain and then added a transdermal pain patch (duragesic). By early October, the amount of systemic pain medication required to control the pain exceeded what her brain could tolerate and still function. She was again hospitalized. After a while, they did a "patient controlled analgesic" pain pump, in which a catheter is inserted directly to the spine and directed at the nerves which are transmitting the pain for her specific area (her liver). It appears that the gastrinoma, which may be more aggressive, had taken over and indications were that her hepatic masses were now growing rapidly. The pain pump worked wonderfully, allowing her to remain alert & pain free, by using far less medication and having a button she could push if there was any "breakthrough" pain.
On October 31st, Sue was transferred to a hospice facility nearer our home, so that it was easier for freinds to visit. She remained there until her death on November 24, 2003. At the time of her death, sue was surrounded by her husband, Jim; her brother & sister-in-law; and five of her closest freinds. The perpetual organizer, Sue planned her own funeral arrangements and memorial service. The never ending "NoidFighter", she requested she wear her "If you don't suspect it, you cant detect it" Carcinoid button during viewings. As the giving person that she was, her eyes were donated to a local eye bank, so that another may see. In her memory, but more to celebrate her life, she requested that donations be made to the Carcinoid Cancer Foundation, so that support group work could continue with their support.
Sue strongly believed that her death from this earth was not the end. Her spiritual belief in Christ allowed her to be at complete peace with her death and was a major influence in her life here. We will miss her, but her influence shall live for a long time.
Sue Weiveris, 1955-2003