Many personal websites contain additional valuable information about carcinoid and related neuroendocrine tumors, survivor stories, medical information, support group schedules, patient conference schedules, treatment tips, newsletters, reports from patient conferences, lecture transcripts, videos, and much more.
These websites include personal and support group sites, both national and international.
- "My Carcinoid Story" by Susan Anderson
La Grande Dame de Carcinoid
Created in 1997, this is the first and oldest online personal website. Susan is a carcinoid patient and awareness advocate. Her website has a wealth of information and should be one of the first personal websites you should visit. She is a longtime carcinoid and breast cancer survivor with an aggressive approach to maintaining an active and lifestyle.
"I was diagnosed with Infiltrative Ductal Carcinoma (IDC) Breast Cancer on June 18, 1999. There is NO connection to Carcinoid, this is completely different! I had a lumpectomy, and did 33 sessions of radiation, but no chemo. I went for mammogram every 6 months for 5 years and now go each year. All is well. Getting those mammograms is very important, do it gals! More on my web site www.carcinoidinfo.info. I am a 10 plus year survivor, but I do not like the word survivor, how about winner!"
"Lead a full and active life while LIVING with Cancer" is Susan's motto. On her website you will find information and links to medical/drug databases, support groups, humor, books, music, prayer lists, travel, political issues, cowboy poetry, and much more!
READ MORE on Susan's blog: http://www.azcentral.com/members/Blog/sunnysusan/50634?&wired
After nearly a year of being sick, with many visits to doctors, the ER and possible diagnoses of Crohn's disease, IBS, indigestion, acid reflux, and a ruptured appendix, Emily was finally properly diagnosed as having a neuroendocrine tumor. Read more about this amazing carcinoid survivor here.
We were on summer vacation on the shores of Lake Michigan in the summer of ’98. One night I started having incredible pain in my gut. I was literally writhing on the floor in pain. My wife went to the store and brought back all the stomach relief medicine she could find. It didn’t help. Gradually the pain subsided. What we didn’t know at the time was that I had a Carcinoid tumor in my intestine. Read more
I was diagnosed with bronchial carcinoids when I was 29 years old. I was newly married and on a business trip in Europe when I got pneumonia. Six months later, I was finally diagnosed with carcinoid. I had the lower two lobes of my right lung removed and began the long, uncomfortable road to recovery. I was given a very ambiguous diagnosis; no one seemed to know what to tell me! Read more
After an emergency room visit in April 2012, Coral “was sent on a journey of scans, a biopsy, tests and a crash course in medical terminology that would rival cramming for any university exam. On May 15th, it was given a name: Stage IV Gastrointestinal Carcinoid Syndrome, which has metastasized to the liver.” But this did not deter a woman who spent 15 years in the military. She says she has hope and an incredible support system of friends and family. “And may I always remember that my purpose has been set in this life – to inspire others to see beyond the challenges they face in this lifetime.” Read Coral’s blog here and check out an article in the Northwest Guardian about Coral, “Courageous ACAP Worker Defines ‘Selfless’.” Coral works as a Transition Assistance Program workshop facilitator at the Joint Base Lewis-McChord Army Career and Alumni Program center. She speaks to transitioning and retiring soldiers and families.
Newly married, working on her MBA during the evening, feeling that everything in her life had come together perfectly, Catherine was given the news that she has carcinoid cancer following the discovery of a tumor in her small intestine during a routine gastroenterological exam on August 10, 2012. As she prepares for surgery, Catherine has become an extraordinary advocate for the iCancer campaign, seeking to raise funds for the Uppsala University Oncolytic Virus Fund. She says, “There is one thing that gives me hope, and it is a cure.” Read more at Catherine’s blog.
Brian Bowe was diagnosed with carcinoid in 2005, after years of not feeling well. In his blog, Brian says he has “a wonderful and supportive family, incredible friends,” a terrific career, and he enjoys life. “My hope is that my journey will not only benefit me, but that it might also help pave the way for others to get the critical treatments necessary to extend their quality of life.” Pictured are Brian and his wife, Kathy. Read more about Brian and his journey here http://fightcarcinoid.com/
Ann was diagnosed with carcinoid cancer in February 2012 with a 5 cm tumor in her right lung. Since then she has learned that her cancer has spread throughout her body. Ann says that she is in “very good company with this rare cancer. Many of you have heard of Steve Jobs’ battle over the last 10 years with Pancreatic Cancer. Most of you are unaware that he actually had Neuroendocrine Islet Cell Tumor which is very different from the more familiar pancreatic cancer that took Patrick Swazye's life. Another familiar figure to lose his battle not too long ago was Dave Thomas of Wendy's hamburgers. It was listed as Liver Cancer. I stand amongst Giants!” Read Ann’s blog here: http://www.anncan.net/.
Derek Wilson, editor of the Larkspur-Corte Madera Patch in California, writes a column most Mondays where talks about his own battle with carcinoid cancer and about cancer issues. “Switching From Patient To Caregiver -- When someone who has eased your pain is suffering, you'll do what you can to return the favor” is a column from August. “My wife and I have been making back-and-forth trips to the hospital lately, but this time I'm just as worried about her as she has been about me.” Read the complete column: http://larkspurcortemadera.patch.com/articles/switching-from-patient-to-caregiver. Check out Derek's column, Tick Tock . . .Time of My Life, in the Larkspur-Corte Madera Patch on a regular basis, CLICK HERE. Pictured are Derek and his wife Tracy.
Meet Isabel Call, a young social scientist whose cancer journey began in the fall of 2011 when she was diagnosed with a paraganglioma in her neck. This rare NET has led Isabel to fight her insurance company – and win! -- in order to be treated with proton radiation beam therapy. Read more about Isabel and her insurance appeal in this Sacramento Bee article, UC Davis student wins coverage fight for 'investigational' cancer treatment. And follow her blog as she uses her “investigational spirit” to fight her cancer.
- Pureed Pzazz: LaVonne Levar’s Blog
Why pureed foods? As a result of living with pancreatic neuroendocrine cancer since 1998, LaVonne experiences intestinal tract blockages if food is not prepared in an easily digestible manner. In her blog, LaVonne shares recipes for pureed foods that are healthy and delicious. “I hope this blog will inspire others to discover that food and life can still be full of Pzazz even when faced with challenges.” Her recipes include beautiful photographs, ingredient lists, how to prepare each dish, and nutritional content. All illustrations for the blog were created by LaVonne’s son, Dan Levar – and they are terrific!
Juliet Haikes was diagnosed with carcinoid on October 21, 2011. She writes in her blog, "On March 21, 2012, I am in remission from carcinoid cancer. Remission to me...It feels like freedom. It feels like water, when you're so thirsty. It feels like fresh clean air, when you need a deep breath. It feels like sun that warms you on a cool day. . .it's that warm blanket from the dryer when you're cold. It's a revival of the human spirit . . .to make you want life back. . .to fight even harder for it. . .to never give up. . .never give in."
Cy is a retired computer software developer, an enthusiastic fly fisherman, bicyclist and music producer. His blog, Cy Ball – Music, chronicles his journey as a carcinoid survivor and shares his incredible compositions. Be sure to listen to all of his works, especially “Carcinoid,” a piece composed when he was undergoing chemoembolization.
Tracy was formerly a fundraiser and musician, now she describes herself as “the CEO of my health.” She spends her time “fighting cancer, writing, teaching, practicing Pilates, putting ridiculous amounts of miles on my road bike, growing vegetables and cooking fresh, plant-based meals.” A pancreatic NET survivor, Tracy was diagnosed in 2007 after many years of pain and illness. Read more about her journey in her blog. Be sure to visit the “About Me” section and read the articles that have been written by and about Tracy.
Imagine the strength, endurance, and determination it takes to run races and marathons. Now consider running with only one lung. This is an inspirational story about two lung carcinoid survivors: Deirdre Durant and Kenneth Todd.
“Everybody needs a hero; for me, it's Jacqueline Kennedy Onassis, affectionately known as Jackie-O. For as long as I can remember, when things became difficult, my mother would always tell me to think of Jackie-O and how she would handle the situation - with perfect grace. That is the purpose of this blog, to allow me to channel some of Jackie-O's intangible grace and dignity in meeting my latest challenge: surviving carcinoid cancer.”
Lindsey’s blog chronicles her journey as pancreatic neuroendocrine tumor (pNET) “liver.” She is 26 and is pursuing a master’s degree in urban planning. Lindsey was diagnosed in October 2010, just after her 25th birthday. “With cancer,” writes Lindsey, “there are generally three categories of living patients: those in treatment, those in remission, and those who have been cancer-free for many years (survivors). I don’t fit fully into any of these categories so I made up a new one: I am a liver.”
“My carcinoid cancer journey, like most carcinoid journeys, is a long and winding one,” writes Kristin. Join her as she chronicles her “adventures” from a trip to the ER to testing, diagnosis, surgery, and weighing different treatment options.
- Roger Wood, son of DGW, created this amazing blog, documenting step-by-step his father's trials and tribulations living with carcinoid. A true educational voyage for both patients and caregivers.
After over a decade of suffering from Carcinoid Cancer, Sunny Carney has decided to fight back. She is currently preparing to undergo proven treatments in Basel, Switzerland. She has exhausted all the treatments here in the United States.
After a courageous 10 year fight battling Carcinoid Cancer, Sunny Carney, an extraordinary advocate for carcinoid awareness, passed peacefully on Saturday, November 3, 2012.
Lucy's blog, started in October 2008, covers everything from a video on how to mix black raspberry powder; PRRT; travel tips for carcinoid patients in Europe; and the nanoknife procedure for carcinoid tumors. We recommend Lucy’s blog for an extraordinary amount of practical and varied information for carcinoid survivors.
This website has been created to share with you my story. It’s a story about being diagnosed with cancer. But not just any cancer - a rare form of cancer, one that is normally diagnosed in people twice my age. Many people have never heard of it, most doctors are confused by it, and survivors are just looking for a way to beat it. This is my story about my ongoing battle with Carcinoid Cancer.
June 2006. We mourn the departure of Larry from this earth.
Larry, a long time Noid survivor, published an amazing website. One of the goals with this website was to provide direction to those searching for useful information about carcinoid cancer and carcinoid syndrome.
Good Evening Ya'll. Just wanted to let everyone know that I have updated my Caring Bridge website.
NEW SURVIVOR STORIES
- Kelly Andersen's Carcinoid Story (posted November 28, 2012)
I was diagnosed with carcinoid of the duodenum in 2008. It was a very small tumor, but still serious. I had a partial small intestine resection which was a very serious surgery that required the surgeon to cut me open from breastbone to bellybutton. READ MORE
- Anna's Carcinoid Story (posted October 18, 2012)
Hi, my name is Anna. I am a 25 year old girl who was recently diagnosed with Carcinoid Cancer this past August 2012. In August, I awoke in the middle of the night with severe pain in my lower belly. The pain was so severe that I went to an Urgent Care where the doctor diagnosed me with appendicitis and told me I would have to go right to the ER. READ MORE
- Dave Smyth's Story (posted September 5, 2012)
I know cancer is not a pain of itself but it does cause it. Over the years I have been living with a pain that I hid from a lot of people including myself. It wasn't until July of 2008 that I could not take it anymore. Was I scared, was I stupid, was I selfish, or was I just in plain denial? Why would I have cancer? No one in my family had it. I was expecting some type of other problems over the years like a stroke or a heart attack, but never cancer. READ MORE
- Jeanne Lambert's Story (posted July 2, 2012)
We are only five weeks from the Run for Hope 5k, I just want to share with you the passion behind this event in our Colorado city of Fort Collins and the blessing Carcinoid Cancer is in my life. As founder and director of the Run for Hope 5k for the past 8 years, I am reminded that we have much much to do…there is still not a cure, there are still those that don’t know they are not alone and many who have no HOPE! READ MORE
- Harriet R. Hannigan's Story (posted January 4, 2012)
I have Metastatic Carcinoid Syndrome. My symptoms started in March 1981 and being a Nurse, I looked up everything and came to the conclusion that I had Carcinoid Cancer. I asked many doctors who never agreed. I was getting sicker as I grew older, changed doctors and was still told I had Irritable Bowel. I knew better, I had read volumes of literature, particularly Dr. Warrens in NY, and I could not find a doctor who would listen. In October 2000, with my daughters encouragement, I went to a Lahey Clinic MD and after many tests, they diagnosed me with Metastic Carcinoid Syndrome in Nov. 2000! I have had a small bowel resection and ovaries removed and receive 40 mg. of Octreotide every 28 days (since Jan.2001) and now feel better at 80 years of age than I did at 50. I now have Carcinoid Heart Disease but am doing well. I still play golf and bowl and am more active now than when I was younger. You can live with this disease if you find the right doctors. I believe that many doctors have heard about it but know very little about it. Thank you
- Master Sergeant Aki Summer's Story (posted November 20, 2011)
I'm Aki A. Summers and currently serving Active Duty Military with the US Air Force for 18.5 years. I have written 2 articles below and would like to share them with other survivors. I am 9 months into remission.
- Carolyn Woolman's Story (posted November 20, 2011)
In 1992 I was diagnosed with metastatic pancreatic cancer. I was at the time an ER Nursing Manager. I was told I had 3-6 months to live. After two years on chemo I requested another biopsy and was told it was carcinoid. I went to a large teaching university hospital and was told they could supply support but no treatment was known. In 1998 I contacted Dr. Richard Warner at Mt. Sinai in NY and was told the only doctor in CA he would recommend was Dr. Edward Wolin at Cedars Sinai. Dr. Wolin told me he was going to go after the carcinoid with aggresive treatment. I had lots of tests and scans and three chemo embolizations. I had no untoward effects from them. I was sent to a liver surgeon. A central line was placed in my arm and I was given chemotherapy. In eight months it was felt that surgery could now be performed. I had remained very active until this time without any real side effects from any of the treatments. The carcinoid was in the liver, stomach, and small bowel. They also found a renal cell tumor while doing a pre-op work up. In October of that same year I underwent extensive surgery. They removed my kidney, part of my stomach, part of my small bowel and 80% of my liver. Over three days I had 24 hours of surgery. I developed two infections and had lots of antibiotics. The hospital stay was kind of a blur. I honestly do not remember any pain. After 3 weeks I was discharged. It took a couple of months before I was really recovered. It is now 2011 and I remain cancer free. Since that time I got to see my son and my daughter both graduate from college and both married. I have a 9 year old granddaughter and a 7 year old grandson. To say that I am blessed to have found Dr. Wolin would be such an understatement. He not only saved my life but has given me years to make memories with my friends and family. I never thought I would live to see 40 and now I am 66. I am active in my grandkids' school and try to appreciate every day. I pray for anyone reading this that you will recover from this disease. I cannot believe how far the treatment has progressed and the new treatments just on the horizon. My only advice would be to make sure you go to someone who is actually a carcinoid specialist. Many doctors will say that they know how to treat this disease but as I found out at the university hospital, they did not. It would have cost me my life had I stayed with that facility. I don't know if my email will be shown but if it is please feel free to contact me if you have questions and may God bless you. firstname.lastname@example.org
- A Breath of Hope, Lisa Pawlak's Story (posted October 17, 2011)
It’s easy to get caught up in the hype of “back-to-school” season.
I understand this, because I’ve been there.
The month before Joshua (pictured with mom, Lisa, below) started Kindergarten – even though I was working a part-time job at a non-profit, shuttling my two small boys around town to their various activities, and managing our unmanageable household -- I deemed it necessary to spend hours upon hours shopping for the perfect little backpack for Joshua’s grand entrance into academia.
I began the quest by visiting all the major local retailers. I stopped in at several specialty shops. I tried the sporting goods stores, toy outlets, and even a couple of luggage places. When all of these options failed to produce my ill-defined concept of that perfect backpack, I turned to the internet – Lands End, LL Bean, amazon.com. In the end, I went with a junior-sized, monogrammed, Carribean-blue, featherweight variety. It looked adorable on Joshua.
I went through the same process with the lunch box that would go inside the backpack, and then with the thermos that would go inside the lunch box. And don’t even get me started on my journey to satisfy the school supply list – that beast involved five different office supply stores. I was determined that Joshua would have all the correct quantities, requested brands, and specified colors of the various items that were apparently essential to the scholarly well-being of my five-year-old.
I selected the perfect first day-of-school outfit for Joshua. I even “suggested” that we go ahead and lay out his entire first-week-of-school clothing choices in the cubbies of the new, specialized closet organizer (with Monday-through-Friday compartments) recently purchased for this task. After some consideration, I also went ahead and bought him a pair of Skechers sneakers – even though they cost $45 and he’d probably outgrow them in a month. (All the little boys did seem to be wearing them.) Finally, I took him to get a haircut.
It was all a lot of work. It was also rather stressful to get through that big old to-do-list in time for the start of school but hey, in the end, my little boy was officially “ready”.
Three years later, my younger boy, Jonah, started kindergarten. I had actually relaxed quite a bit by then about the whole back-to-school venture, realizing that if I couldn’t find the specified 20-count Crayola box after the first couple of stores I’d gone to, the world wouldn’t end if I sent him to school with the 24-count variety. Also, when he told me that he didn’t even waaaaant a haircut, I let the haircut thing pass. To make up for looking like a slacker-mom though, I went ahead and signed up to be a volunteer in the classroom and to chaperone field trips.
Outside of school, of course, I planned to continue my duties as Team Parent for both boys’ soccer teams. I was also simultaneously looking for a new job and training for a half-marathon in my spare time.
You get the idea.
Looking back, I don’t know why I thought that getting the perfect backpack would make me some sort of super-mom. I don’t even know why I thought that being a super-mom was important to begin with but in my defense, all of that happened before my whole world shifted.
About two weeks after Jonah started Kindergarten, I – a non-smoker who was previously considered to be a healthy, fairly fit individual -- was diagnosed with a rare form of lung cancer, an atypical lung carcinoid. I had lost my own mother, also a non-smoker, to lung cancer right before getting pregnant with Jonah. As a result, when I was first diagnosed, I feared the worst. I feared that I might not be around to send my boys back to school in the future.
The doctors seemed convinced that the cancer was localized to my lung – a very good thing, the treatment result being that surgery was recommended. My overall prognosis seemed quite positive, so I underwent major surgery that fall. Half of my left lung was removed.
I didn’t see my boys the entire time I was in the hospital -- eight days of misery -- because kids weren’t allowed into the critical care unit. Beyond that though, I didn’t want them to see me connected to the chest tubes, the IVs, the morphine epidural, or the various breathing apparatus. For the first time in my life as a mom, because of the intense levels of post-surgical pain, I also didn’t want either of them to enthusiastically hug me. It was the longest I’d ever been apart from them. I went home to begin my recovery on the day of Joshua’s third-grade fall concert, his “Black Light Show”, so I missed that. It was the first big school event of his life that I hadn’t been there for, and that was very hard for me.
I was in horrible physical pain for months after the surgery – and horribly depressed. Halloween was soon after the Black Light Show, but I wasn’t up for trick-or-treating. I also wasn’t allowed to drive for the next two months due to heavy pain medications – so I missed an awful lot during that time.
Somehow, my amazing husband stepped up and managed to take care of all of us and, somehow, I managed to recover from my surgery, although it took many months, and most of the school year had passed before I really began to adjust to my new “normal”. I was exhausted – physically and emotionally.
Eventually, last fall, we found ourselves at the beginning of another new school year and though I’ve racked my mind to try to remember, I don’t actually recall doing any of the usual back-to-school preparations. That school year passed somewhat uneventfully and it has now been two full years since my diagnosis.
It is “back-to-school” time once again, and it now means something quite a bit different than years past.
This year, I can truly say that I don’t care what my boys wear on their first day of school. I don’t care which Star Wars character is on Jonah’s thermos. I don’t care what color Joshua’s lunch box is, and I don’t even really care that the school supply list said 24 “sharpened” pencils. I doubt I will get around to actually sharpening them. Call me a rebel – but I’m going to send them in anyway. I suspect that the world will go on spinning despite copious quantities of unsharpened pencils and I realize -- for real this time -- that none of these details really matter.
So I take a deep breath, because I can – and I simply hope.
Because for me, what does matter is hope.
First, I hope for all the usual things that all moms hope for when kids go back to school. I hope that my boys make lots of new friends this year. I hope that this is the year that they both make straight A’s. I hope that nobody gets bullied, that my kids actually do their homework without me nagging at them constantly, and that I don’t get any calls from the teachers about any playground incidents.
I take an even deeper breath. Hope matters, and so I hope for the thing that matters to me most. I hope that next year I will still be here as my boys once again go back to school. I hope to send them off with new, though generic-brand, shoes on their growing feet, and with unsharpened pencils tucked away in their not-so-perfect, crumpled-up-paper-filled, slightly-gooey-crumb-bottom-lined, backpacks.
- A Carcinoid Soldier's Survival Story (posted February 1, 2011)
When Staff Sergeant Daniel Barber of D Company 1-106th AVN in the Missouri National Guard was first diagnosed with carcinoid cancer in 2009 he experienced feelings of shock, despair, anger, fear and frustration. But he was also relieved because he knew the symptoms he had been experiencing for over a year were not all in his head, as had been suggested to him. From that moment on the Missouri native, who describes himself as “having a little mule in me,” began a journey that is both typical and unusual for a carcinoid patient.
“I wasn’t going to wait and see,” says Staff Sergeant Barber, “especially when someone tells me I have one to three years to live.” The 42-year-old soldier has demonstrated strength and courage all of his life. A graduate of Linn State Technical College, with a degree in aviation technology, Staff Sergeant Barber talked to a friend about joining the Army National Guard in order to pay for his college loans. And thanks to the United States Army college payback program he became debt free and on his way to basic training at Fort Knox, Kentucky in 1989. Today he holds dual status as a member of the Missouri National Guard and as a Quality Assurance Specialist in the Army Aviation Support Facility (AASF) #2, Fort Leonard Wood, Missouri, working on UH-60 Blackhawks helicopters. He is a technical inspector who also trains mechanics.
Soldiers at work on a UH-60 Blackhawk helicopter in Missouri
A component of the United States Army and the United States National Guard, the Army National Guard comprises nearly one half of the U.S. Army’s available combat forces and about one third of its support organization. There are approximately 9,039 soldiers in the Missouri National Guard. National Guard units can be mobilized at any time by the President to supplement regular armed forces and upon declaration of a state of emergency by the governor of the state in which they serve.
Staff Sergeant Barber’s first deployment as a civilian soldier was in 1990 for Operation Desert Shield/Desert Storm, where he spent six months in Saudi Arabia, Iraq, and Kuwait. He was part of the 1267 Medical Company, responsible for UH-1H Hueys Medivac helicopters. He has since been deployed twice more, from 2003 to 2005 and from 2008 to 2009, serving both times for Operation Iraqi Freedom Delta Company.
Before leaving on his last deployment, Staff Sergeant Barber began to experience the symptoms that would later lead to his diagnosis. After eating he would become warm and flush. His trigger foods were milk and milk products as well as spicy foods. Stressful situations also caused physical reactions.
Upper and lower GI tests led Staff Sergeant Barber’s doctor at the time to diagnosis him with esophagitis gastritis. “The doctor prescribed some medication to cut down on my stomach acid and sent me on my way.” Cleared by an internist and flight surgeon, Staff Sergeant Barber deployed with his unit to Iraq. Still not feeling well when he returned to the States, Staff Sergeant Barber sought a new family physician, describing all of his symptoms, including pain under his rib cage upon outtake of breath. An ultrasound was ordered and it was determined that Staff Sergeant Barber’s gallbladder was normal but the spots on his liver were not. A CT scan followed as did an Octreoscan and blood work. The diagnosis was high-receptor carcinoid tumors, a midgut primary tumor in the mesentery, and more than 50 tumors in his liver.
After his physician admitted he didn’t really know much about carcinoid cancer, Staff Sergeant Barber sought guidance from the Heartlands Carcinoid Support Group. He talking to the other patients about how they were being treated and doing as much research as possible. The physician who stood out to Staff Sergeant Barber for a second opinion was Dr. Jean F. Botha, Director of Hepatobiliary Surgery and Director of the Living Donor Liver Transplant Program at the University of Nebraska Medical Center.
Staff Sergeant Barber went to his appointment with Dr. Botha hoping he could have a two-stage liver resection. After reviewing Staff Sergeant Barber’s scans and history, Dr. Botha did not feel he was a good candidate for the procedure and recommended three other options: a liver transplant, a multivisceral organ transplant (transplant surgery that includes more than one organ), or PRRT (Peptide Receptor Radionuclide Therapy) followed by surgery and a small bowel resection, if the Staff Sergeant had the monetary means to pursue PRRT in Europe. As a soldier, husband, and father of a seven-year-old son, the choice was clear – PRRT – but how would the finances be made possible?
Staff Sergeant Barber was transitioned into the Army’s Wounded Warrior Program (AW2), the official Army program that serves severely wounded, ill, and injured soldiers, veterans and their families wherever they are located, regardless of military status, for as long as it takes. The program was initially established in April 2004 as the Disabled Soldier Support System (DS3).
HACE (hepatic artery chemoembolization) treatments began for Staff Sergeant Barber on October 16, 2009, with injections to the right side of his liver, and then in November to the left side of his liver. It was “wait and see” approach when a CT scan one month following the treatments showed mixed results. During this time, Staff Sergeant Barber ran out of both sick leave and vacation time. But due to an extraordinary show of support on behalf of his colleagues, 192 hours of their vacation time was donated to the Staff Sergeant so that he never missed a paycheck. On November 30, 2009 he joined the Warrior Transition Unit (WTU).
WTUs provide critical support for soldiers who are expected to require six months of rehabilitative care and the need for complex medical management—and their families. The units have physicians, nurses, squad leaders, platoon sergeants, and mental health professionals. These leaders are responsible for making sure wounded soldiers’ needs are met, their care is coordinated, and their families are taken care of. The success of the WTU system is based on its “triad of care.” The triad is comprised of a squad leader, nurse case manager, and a primary care physician. These professionals put the soldier first, cut through red tape, and take care of the details.
Fortuitously, Brigadier General Gary H. Cheek, Assistant Surgeon General of Warrior Care and Transition and Commander of the Warrior Transition Command, was visiting Missouri when Staff Sergeant Barber was in the WTU. Staff Sergeant Barber was given the opportunity to discuss his case, treatment plan, and insurance issues with the Brigadier General and with the WTC’s then Command Sergeant Major, Ly Lac, both of whom were both very supportive of the care plan and policies in place to pursue PRRT treatment with Dr. Richard Baum at Zentralklink, Bad Berka in Germany.
The health policy in place that allowed Staff Sergeant Barber to pursue PRRT treatments is offered by TRICARE, the U.S. Department of Defense Military Health Program. In a little known section of the health policy, coverage for treatment of rare diseases is available on a case-by-case basis. Utilizing information such as national expert opinion organizations and trials published in refereed medical literature, if the “case review indicates that the proposed benefit for a rare disease is safe and effective for that disease, benefits may be allowed.”
After being sent to the Walter Reed Army Medical Center in Washington, D.C. to consult with an oncologist, who was also supportive of Dr. Botha’s referral to Dr. Baum and care plan, Staff Sergeant Barber’s records were sent to Dr. Baum for review and Dr. Baum concurred that he would be a good candidate for PRRT. Word came down that approval had been granted for Staff Sergeant Barber to travel to Germany and arrangements were made for his trip there this past May.
Once again the Warrior Transition Unit was extremely proactive in providing support. Staff Sergeant Gagne of the WTU in Sweinfurt was assigned as Staff Sergeant Barber’s squad leader and he was there to meet him at the Frankfurt airport, to transport him to the Army base in Sweinfurt to rest before the PRRT treatments, and then to Bad Berka.
(pictured is Dr. Richard P. Baum)
On Sunday, May 9th Staff Sergeant Barber checked into the clinic at Bad Berka and on May 10th had his kidneys tested followed by a consult with Dr. Baum. A Gallium 68 DOTATOC PET/CT scan on May 11th revealed that his tumors were expressing high amounts of somatosatin receptors, a necessary requirement for PRRT. On May 12th he had his first treatment, a 15 minute procedure. “You can feel every hair on your body stand up, you’re antsy, the adrenaline is flowing,” is how Staff Sergeant Barber describes what it felt like to wait for the procedure to begin. Then came the recuperation period. While he describes the procedure as tolerable he was also nauseous, weak, disoriented at times, tired and lost 12 pounds. The trip home was difficult. But it was all worth it, especially when Dr. Baum told him that with 3 to 5 treatments he would expect Staff Sergeant Barber’s disease to be stabilized and that he would live for a long time.
Life has improved for Staff Sergeant Barber since he completed his first PRRT treatment. He no longer experiences flushing and has discontinued Sandostatin. He just completed a second PRRT treatment, which he tolerated well, and a good response to the therapy was shown on the follow-up Ga-68 DOTATOC PET/CT before the second cycle.
Staff Sergeant Barber receiving his 2nd PRRT treatment
This is all wonderful news for Staff Sergeant Barber’s wife, Deanna, and his son, Luke, who entered 3rd grade in the fall of 2010. One of the greatest challenges of living with carcinoid has been to “keep my life on track for my wife and son.” Making sure that Luke gets to school and his activities and that Deanna has support when he is deployed or in Germany for treatments is difficult but Staff Sergeant Barber describes his wife, who comes from a military family, as a “trooper.” Her support is also invaluable for Staff Sergeant Barber.
The five most important things Staff Sergeant Barber would recommend for other carcinoid/neuroendocrine cancer patients are:
What does the future hold for Staff Sergeant Barber? “The Army leaves no soldiers behind,” he says. Thanks to the best medical care and leadership made possible by the Army, a wonderful family support system, excellent insurance coverage, guidance from a carcinoid support group, hope, a positive attitude, and faith, the future looks very bright for Staff Sergeant Barber.
- Find a doctor who specializes in your disease;
- Join a support group;
- Do you own research; you are your best advocate;
- Hold your insurance company accountable and understand the policies;
- Don’t take the wait-and-see approach; be determined to watch your family live and grow.”
- Theresa Conroy (posted January 23, 2011)
I am a seventy nine year old woman, diagnosed with midgut carcinoid syndrome, February 2010. Stage four, c.s. was diagnosed.The bone marrow biopsy was positive, as were the octreotide scan,and the lab values were elevated CgA 272, and5H1AA 24.I was started on Sandostatin, IM monthly, and the diarreah and hot flashes have gone.So far my liver and kidneys are not involved. My biggest problems at this time are weakness and almost twenty pound weight gain. I actually worked as a clinical nurse three in a neonatal unit for 34 years and retired after my diagnosis. At this point I am not in pain, and I am grateful for that.When I read about food I should stay away from that includes most of my diet. Because my symptoms are not surfacing at this time, should I be excluding milk, high fiber bread, and cheese from my diet? I know if I eat walnuts or avocado, it has an effect on me, so I do stay away from them. I do have a positive attitude. My husband of sixty years is having a difficult time. I keep reminding him it's slow growth, but it is hard to forget the tumors are traveling through my blood.My doctor has never seen carcinoid in the bone marrow. Does anyone out there have any info about this? It was good for me to sit down and write about my cancer. Whoever reads this I appreciate your input. Thank you. Theresa Conroy
- Richard Smith (posted December 9, 2010)
Severe "gut pain" 2/88. The beginning.
Moved to NC from NJ 12/90.
DX Primary Liver Cancer 2/2000 given six months to live.
Moved back to NJ 4/2000.
DX Carcinoid Syndrome by BX 5/2000.
Visited Daniel Haller, MD prof of Onco U. Penn
11/2000. He advised Octreotide.
Recieved computer 12/2000 for holiday.
Found Carcinoid Cancer Foundation site.
Studied here and elsewhere to find out all I could about the "enemy."
Started Octreotide with out a scan 11/2001.
'Been doing about 400 to 600mcg daily since (sub q.) Titrating dose myself.
Also a very low fat diet.
Thanks to the CCF in the beginning, a strong belief in God and a refusal to give up, I'm still here going into my 23rd year. (even though the cancer is all over, I fight like hell!) Never surrender to it!
Eric has been diagnosed and treated for a rare form of cancer called "Carcinoid Cancer". His personal website chronicles the saga of Eric's trials and tribulations on his journey from the day of diagnosis. This website is updated very frequently.He has finished his 4rth and final Lu-177 treatment as part of the study conducted by Prof Harvey Turner at Fremantle Hospital WA with reasonable good results.
Photo: Eric & Leonie Gully
Carcinoid & Neuroendocrine Tumor Society is an association of patients, caregivers and physicians, promoting better understanding of carcinoid and neuroendocrine cancer, a relatively rare disease which is poorly understood and is often misdiagnosed.
About CNETS Singapore
The association was formally registered on 9 April 2009 (ROS Number 2039/2009). The founders of the association are Dr. Paul Ho, Lam Wei Choong, and William Claxton. Founding members include local and foreign patients, and many prominent Carcinoid NETs specialist physicians in Singapore.
This Swedish carcinoid support group site contains many easily understood articles by some of the world's foremost carcinoid/NET specialists.
Diagnosis midgut carcinoid by Agneta H-Franzén (A patient's perspective)
Carcinoid Cancer Foundation
333 Mamaroneck Avenue #492
White Plains, NY 10605