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CACS - Larry Chinnery Bio
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This page is dedicated to members of the CACS who have lost their fight with Carcinoid Cancer. We present this information first as a memorial to the departed member and second in the hope that the information here will be helpful to someone who is researching or fighting our disease. Click a link below to see the memorial bios.
Ted Crump
1939 - 2008

Bob DeGroot
1945 - 2007

Gloria Guadagno
1934 - 2007

Liz Hollenbach
1948 - 2007

Susan Spillman
1959 - 2006

Larry Chinnery
1938 - 2006

Mark Redfern
1956 - 2005

Jennifer Murphy
1960 - 2003

"Coach" Lombardi
1962 - 2003

"Bob" Niblock
1936 - 2003

"Bob" Kurtz
1939 - 2002

"Kay" Shea
1931 - 2002

"Mickey" Moomey
1925 - 2002

"Don" Jones
1953 - 2002

Survivors
Bios of living members


Lawrence Windle Chinnery Sr. (Larry)
September 18, 1938 - June 21, 2006

On June 21, 2006 at 8:30 AM, Larry died peacefully at Montgomery Hospice Casey House at age 67 1/2. His wife, Linda, and his daughter, Caroline, were with him when he passed on to "glory."

Two years ago Larry had already started looking into what hospice services could offer - which others might want to do as well. He had a good experience with both hospice home services and then at the hospice facility.

Larry actively fought his Carcinoid disease since diagnosis in 1992 and thought that he had probably had it for at least a prior 15 years as well.

Larry and his wife Linda are two of the founding members of the Capital Area Carcinoid Survivors support group and they have also founded and participated in a number of Carcinoid E-Groups and several organizations whose primary purposes are to foster research for and the disimination of information about Carcinoid Cancer. Larry was very well known among Carcinoid patients nationwide and will be missed by all.

He is survived by his wife, Linda Silversmith of Rockville, MD; daughters, Elyse Mims, Marie Jones and Caroline Giambi; sons Army Major Lawrence Chinnery Jr. and George Chinnery; brothers William, Richard, Carl, Naval Captain Henry, and Dean Chinnery; and sister Ardyce Brown.

"Boo" will also be missed by his 12 grandchildren and three great-grandchildren. He was preceded in death by his first wife of 39 years, Elizabeth Waldron Chinnery, his parents, George and Ardyce, and his eldest brother, George.

A Memorial Service was held on Monday, June 26, 2006 at 2 p.m. at Saint James Episcopal Church in Potomac, MD. In lieu of flowers, donations may be made to the Carcinoid Cancer Foundation, www.carcinoid.org


The following material is reproduced here from a memorial booklet that was distributed at the memorial service.
He served his God, his country, his family,
and the public trust as best he could and
in the only ways that he knew how to do them"

by Larry Chinnery

SNAPSHOTS FROM LARRY'S LIFE
by Linda Silversmith, Larry's wife

Born in Kansas City, Kansas on September 18, 1938

First memory, age 2 1/2 - trying to find the bathroom in the new house in Kansas City, Missouri

Paralytic polio, age 4; time spent in an iron lung, followed by Sr. Kenney's types of exercise — Larry attributes his later determination to break out of North Vietnamese prisons and to fight back so hard against cancer to never wanting to be so helpless ever again

Fought and downed a bigger boy at age 6 while defending his 7-year-old brother Richard (also affected by polio) who had been called "gimpy" — learned much later in life why his hit had been so effective

Regularly walked his 6-years-younger sister Ardyce to school, starting about age 12; snacked on a nearby farm's watermelons while at summer camp, cooling them in the camp's lake

Put a red-hot sauce on the candy he was required to provide to high-school fraternity brothers while a "pledge" - - the response gave him a chance to improve his running. There were other pranks, with one involving frog hunts and ponds, another the highest tower in KC....

Became a serious student approximately in 11th grade, aided by a photographic memory

Was accepted at the U.S. Naval Academy, with former President Harry Truman as his reference, but failed the eye exam (and was not told he could appeal) — this loss became Grinnell College's, and later the computer world's, gain

First college year at a Kansas City junior college was followed by two years at Grinnell College, more or less climaxed by a spring incident in which he helped other younger male students to leave after a prank in a women's dorm but then landed on the dean during his own jump from a window. Was advised by a professor to look into the new world of computer programming while serving a suspension from school.

Back in Kansas City and working, he and long-time friend Betsy Waldron began to see each other in a new light. Became the high scorer on an aptitude test from the Rand Corporation. Married Betsy on New Year's eve, moved to California for intensive training by Rand and the beginning of a series of sophisticated positions as a computer programmer and analyst in various spots around the country. Continued to take college courses, eventually receiving his degree from University of Missouri at KC with Betsy and all five children [Elizabeth (Liz/Elyse), Marie, Larry jr. (Del), Caroline, and George] present. Was a civic activist in his communities.

While working on the east coast in 1963 was recruited, partly for his computer skills, as what might be called a "technical advisor" in Vietnam, a task accomplished through the CIA and with a foreshortened Navy SEAL training, becoming captain of the first SEAL team 4. Served for two years, sometimes arriving in Vietnam via night-time aerial drops; captured twice by the North Vietnamese, for about one and two months before escaping ["I wanted to see my family again"] and hiking across Vietnam to Cambodia; one of those times was tracked for a while by a tiger; second hike ended temporarily in a body bag after a concussion bomb discharged near him as he approached safety. Recuperated but not 100% (after un-bagging) in Japan. Resigned naval commission in 1965.

Two job highlights: Through a contractor, developed aspects of the Apollo program for NASA in Houston and moonlighted as a "test astronaut" testing equipment. Later also worked via contract for the Strategic Air Command, developing programs used for many years by the military. Once tested to what level of security he could go wearing a Mickey Mouse badge (answer - the third of four levels).

Started the first computer store in Maryland and possibly the country in 1975. Betsy worked with him. The "Computer Workshop" became a chain of several stores stretching from Rockville to Annapolis during its 10-year existence. Larry applied his woodworking skills to ready most of these stores. When the field became too competitive and cross-dealing to be fun, the Chinnerys closed down. While attending a computer conference in 1980, had to jump from 40 feet up to escape the MGM Grand fire. Used his Navy SEAL skills to help a circus troupe rescue some others, not knowing until two months later that he had fractured his spine.

Also in 1985, he had to cut short a computer consulting job in Saudi Arabia because of lung problems. In retrospect, these were probably relatively early signs of his carcinoid cancer and carcinoid syndrome that were finally diagnosed properly in 1992. [see www.noids.org for his medical story and more] He found less strenuous work in someone else's computer store and also managed properties at times.

In 1992 after possibly 10 oncologists said there was no treatment, an 11th oncologist said, "Let's try." This began five years of chemotherapy that soon included active participation and leadership in cancer support groups [where he was a major force]. Eventually the chemotherapy shrank tumors and led to his feeling much better. He had retired in 1992 on social security disability. Alas, Betsy died in early spring 1998.

Began his acquaintance with his eventual second wife, Linda Silversmith, through an internet "in search of service in August 1998. They found that they lived only four miles apart and had many common interests and views, including some of the same favorite restaurants.

Took a couple of Caribbean cruises in 2000 and 2001 (while Linda was back home writing away as a science writer for NIH) and thoroughly enjoyed them except for (1) having to have a major medication air-shipped after he accidentally packed an empty bottle the first time and (2) not quite dodging in time while ascending a rope ladder after a swim and having the hull slam his carcinoid-cancer-affected liver.

Also traveled with Linda, purchasing a timeshare in Myrtle Beach, South Carolina and exchanging it for vacations in the Shenandoah Valley (two times); Marabella, Spain; Branson, Missouri - with Larry's 92-year-old mom joining them; Ruidoso, New Mexico; and near Knoxville, Tennessee.

Along with Linda and six others, founded a local carcinoid cancer support group in 2001, serving as its vice president and briefly as president; was active also in carcinoid patient-caregiver e-groups. Continued his life-long routine of helping others.

Married Linda in July 2002, followed by a celebration party in August that combined a potluck and square dancing.

Underwent a variety of treatments both for painful symptoms and to try to suppress growth of the slowly but steadily growing carcinoid tumors. [Larry and Linda and Larry's oncologist regularly did option charts and worked out together what to do next.] Learned on June 1, 2006, that the options had run out because his bone marrow was no longer recovering from treatment side effects.

Died peacefully on June 21, 2006, at Montgomery Hospice's Casey House.

Donated his body to George Washington University's medical school.


Following is Larry's Bio as written by Larry himself for the CACS website.
Patient name: Lawrence W Chinnery, Sr. (Larry)
Home Location: Rockville, Maryland
Date of birth: September 18, 1938

Onset of symptoms: 1976 - Age 37
Type of symptoms: Weakening of the muscles on the right side of my body; extreme fatigue, muscular aches and pains, abdominal cramping, occasional serious watery diarrhea, and occasional loss of consciousness.

Diagnoses: April 27, 1992 - Age 53 - Metastatic carcinoid tumors in the liver and spleen (over two dozen) - primary not located. Carcinoid Syndrome.

Method of diagnoses: Medical work-up, Colonoscopy, CT-scan, Biopsy, and 5-HIAA all in the spring of 1992 by a gastroenterologist.

Symptoms that led to seeking treatment:
1976: Weakening of the muscles on the right side of my body; extreme fatigue, muscular aches and pains, diarrhea, and occasional loss of consciousness or collapse without loss of consciousness.

1985: Coughing spasms, bodily weakness and aching, extreme drowsiness, loss of sleep, flu-like aching, extreme diarrhea, sensation of having to constantly urinate. In December, bloody sputum in the coughing.

1988: Shortness of breath, drowsiness, intense cramping in legs and feet, extreme fatigue, flu-like muscle aches, joint pain, weakened muscles, loss of muscle control and falling, insomnia, weight loss, infected hand that will not heal, nausea and loss of equilibrium, coughing, stuffiness and clogged ears, frequent choking in my sleep, loss of memory and forgetfulness, continuous diarrhea, headaches, passing out.

1990: Each of the above and extreme chest pains, collapsed bursar in my left shoulder.

1992: Each of the above and intense abdominal pain, flushing, vomiting.

Previous (possible) misdiagnoses:
1976: Borderline hypoglycemia - physician: Internist.

1985: Reactive Airways Dysfunction Syndrome (RADS) - Physician: Pulmonologist.

1988: Post-Polio Syndrome and possible Narcolepsy - Physician - Neurologist.

15 Years: Was also told by several physicians over a fifteen-year period to see a psychiatrist.

Change in quality of life: Significant.

Treatments used and effectiveness:
Systemic chemotherapy: I completed thirty-six courses of chemotherapy (one course consists of intravenous infusion for four or five contiguous days) between June 1, 1992, and the Spring of 1997. Chemotherapy was temporarily postponed in February 1995 due to my having developed chemically induced diabetes. These infusions included the following chemical agents: 600 mg cyclophosphamide (Cytoxan(r) - discontinued 9/92), 1000 mg 5 Flurouracil (5-FU), and 1000 mg Streptozocin(r) (begun 9/92), plus 15 mg (x 8 or 10) ZOFRAN and 10 mg Decadron (Dexamethasone Sodium Phosphate -discontinued, for the most part on 7/93) to help control nausea and vomiting.

I have also self-injected (subcutaneously on a daily basis, since June, 1992) somostatin analogue (Sandostatin(r)).

The above two therapies completely eliminated all visible tumors from various scans by the Spring of 1997.

Radio Frequency Ablation (Planned): By 1999, various scans began to again show several large tumors in the right lobe of my liver. In the Summer of 2001, the pains began to become significant again. In anticipation of performing a radio frequency ablation, surgeons at the National Cancer Institute performed exploratory laproscopic surgery, but determined the number of tumors in my liver to be too numerous to continue with the RFA.

Chemoembolization: I completed an chemoembolization on May 1, 2002, at Johns Hopkins University Hospital in Baltimore Maryland. It took me about six weeks to recover from that procedure – just in time for …

Phase II Trial: I was enrolled in a Phase II trial of Gleevec on June 27, 2002 at the M.D. Anderson Cancer Center in Houston, Texas. I began taking Gleevec on July 1, 2002, but had to discontinue this therapy and trial in early February, 2003, as I experienced two severe infections – one external and one internal – and had to be hospitalized. Use of Gleevec did, apparently, stabilize growth of the tumors in my liver.

At the same time, in the fall of 2002 I learned that the carcinoid had entered into my bones (bone metastases), and this problem continued into 2003. I began to be in severe pain from the bone metastases in spring 2003 and this pain continued to develop into the summer, at which time I was using very significant quantities of opiates just to “get through” the days and nights.

Zometa: I began getting infused Zometa, for bone strengthening, in November, 2002. After the first treatment, I had several days of extreme chills and shaking, but this was never repeated.

External Beam Radiation: In June 2003, it was determined that the extent of my bone metastases included my femurs, hips, entire spine, shoulders and ribs. I, apparently, might have also fractured my left femur; all of which accounted for the severe pain. So I underwent external beam radiation of my left hip before …

Samarium 153 (Quadramet) Infusion: In early July 2003, I underwent infusions of Samarium 153 and Cisplatin to abate the pain of the bone metastases. This has proven a very effective treatment as most of the pain abated within 24 hours. Two months later (September 2003) I determined that the use of one or two Vioxx took any “residual” pain away.

Sandostatin LAR: I began getting 28 day injections of Sandostatin LAR 20 and then LAR 30 (28 days later) in December, 2003.

Second Samarium 153 Infusion: On February 5, 2004, the pain had once again gained hold on me and so I had a second Samarium 153 infusion. This time I chose not to have the accompanying Cisplatin. Again the pain was abated, this time in about 27 hours.

Interferon (INTRON® A): Because of continued metastatic tumor growth (liver, splean, and bones), I began search of a systemic treatment in late 2003. On April 13, 2004, I began taking injections of interferon (Intron A) in addition to the Zometa and Sandostatin LAR.

In mid-May, 2004, due to unexplained bleeding and fatigue, I had to stop the interferon injections.

I re-began taking interferon a few weeks later and continued this therapy into July, 2004.

Onset of Diabetes: Also in mid-May, 2004, and probably due to the years of Sandostatin treatment, I began treatment (insulin and other meds) for type II diabetes.

Another Chemotherapy regime - Xeloda, Temodar & Kytril: In August, 2004, I began a new chemotherapy regime on a twenty-eight day cycle - 14 days on and 14 days off. During days 1-14, I take six Xeloda (pills). During days 10-14, I take one Kytril and four Temodar (also in pill form) daily. The Kytril keeps me from nausea and vomiting from the Temodar which converts to DTIC in the body. Likewise, Xeloda turns to 5-FU in the body but I seemed to tolerate that better.

Put on Hold: Because my blood counts (particularly the platelets) became so low in late September (2004), I had to put additional chemotherapy and my diabetes treatments on hold and on October Ist I had to have a platelet blood transfusion. The platelets and other counts remained very low as I wrote this and I became very weak.

Subdural Hematoma: After several more blood transfusions, I was hospitalized for several days in early November, 2004, because a brain CT-scan showed that I had developed a subdural hematoma in my right front brain. Initially this was thought to be very serious; but it was determined, via other CT-scans that this “problem” would probably right itself without surgery. I began monitoring this condition with MRIs of my brain every six weeks.

My January 18, 2005, brain MRI indicated that the subdural hematoma has continued to shrink.

Skull Tumor: Unfortunately, the MRI also indicated that I have new metastatic disease in the left posterior skull. This was confirmed by an octreoscan done on February 23, 2005. I am left, as of this time, with the question: What to do with this latest invasion of my space.

CgA: My chromgranin A (CgA) blood assay, which had been running between 600 - 1600 in the Spring of 2004, was in the 22-25 (normal) range in January & February of 2005. This probably means that my tumor load has decreased significantly. Unfortunately the February 23, 2005, octreoscan indicated massive uptake in both liver nodes and left shoulder in addition to my skull.

Additional tumor Load: In early May, 2005, I began having extreme chest pains. An abdominal and chest CT-scan indicted increased-sized tumor in the left lobe of my liver. I continued to have these and, now, other pains well into July. A number of tests indicate it is neither my heart or gall bladder (although my gall bladder is loaded with “stones”.

Sooo, I was scheduled for a second chemoembolization at Johns Hopkins Hospital in mid-July. However, because the mid-chest pain stopped the second week of July, I cancelled the chemoembolization and undertook to do some more systemic chemotherapy using Xeloda.

Because I fell asleep for most of each day (for severl weeks) after one round of Xeloda, it was stopped.

September, 2005: The pains in my lower spine and hips have returned with a vengence. So I am hoping to be able to take another Samarium 153 infusion soon. I probably will also have laproscopic surgery to remove my gall bladder.

Entire History: I'm documenting most of my symptoms, which may or may not be related to carcinoid, so please if you have questions about carcinoid refer back to reference pages or The Carcinoid Cancer Foundation - http://www.carcinoid.org/.

I was born on September 18, 1938. In 1942, I contracted polio and, among other things, experienced total paralysis. With many months of medical treatment, hot packs and assisted exercise, I overcame most of the paralytic effects of the polio within two years. Medically, my school years were mostly uneventful.

I did box for two years (grades 11 and 12) in the bantamweight division of the Golden Gloves and I wrestled (at 159 pounds) while in college.

I took two “vacations” in Vietnam in the mid-sixties. I began my second return from “The Nam” in a body bag having suffered severe damage from a concussion grenade lobbed at me. Several months in a military hospital in Japan mostly corrected that situation.

I also boxed in the heavyweight division while in the military.

I was involved in an automobile accident in 1965 when another automobile hit mine at an estimated 100 mph. Essentially I walked away from that one with contusions and abrasions even though I had been thrown through my car’s windshield.

In the Fall of 1976, I had a minor automobile accident. As a result of that accident (which I easily "walked away" from - I was wearing my seat belt), I began to experience a weakening of the muscles on the right side of my body; extreme fatigue, muscular aches and pains, diarrhea, and some occasional loss of consciousness. My internist told me that I was "borderline hypoglycemic" and I was placed, for several years, on a restricted diet.

In November of 1980, I suffered several broken vertebrae and crushed disks having jumped several stories from a fire at the MGM Grand Hotel in Las Vegas, Nevada. I underwent neck reparation surgery (grafting of C5, C6 and C7) in mid-March of 1981. Two vertebrae (one mid-spine and one in the lumbar region) remain untreated.

In August of 1982, while at work, my lungs were subjected to chemical smoke and I was rendered unconscious for several hours. I was treated for several years for the resulting lung condition under the care of a pulmonologist. I was treated for about a year with Prednisone (a corticosteroid) and other drugs.

In late 1985, I accepted a position in Saudi Arabia supporting the Royal Saudi Navy in Jubail, K.S.A., but was forced to return to the United States, in late 1985, by continued failing health which began two days after my arrival in the Kingdom. I was ill and unemployed for the first half of 1986, but in June of that year I was able to begin part-time work at a small computer concern in Rockville, Maryland. I was diagnosed with Reactive Airways Dysfunction Syndrome (RADS) and treated with Prednisone, Theodur (Xanthine), Dalmane (Flurazepam HCl) and Ventolin (Albuterol) inhaler.

I should add that I appeared, in mid 1985, to be in very good physical condition. I underwent three days of physical examination and testing prior to embarking for Saudi Arabia and was pronounced in prime physical condition. However the coughing, previously described, began two days after my arrival in Saudi Arabia.

My health continued to fail and in 1988 I was diagnosed as having Post-Polio Syndrome and possible Narcolepsy as well as the Reactive Airways Dysfunction Syndrome.

So, since 1976, I had been continuously under the care of a number of different physicians and had undergone many painful and nauseating medical examinations and tests. One evening, in June 1991, the pains in my upper abdomen and chest got so bad that one of my sons had to carry me to bed. Examinations by physicians the next day uncovered nothing unusual. In August 1991, my left shoulder "froze" with adhesive capsulitis and I underwent several months of physical therapy and a procedure at a local hospital (under general anesthesia) to manipulate and "free" the shoulder that November.

The abdominal pains and other symptoms continued to worsen and I continued to badger my physicians. In February 1992, I was referred (probably out of desperation by my then physicians) to another doctor, a gastroenterologist. For the next two months, this doctor, a gem, put me through everything again -- after grilling me for many hours for two days -- and added a number of other tests including a colonoscopy, CT-scans and liver biopsy.

This series of tests, culminating in the spring of 1992, resulted in the diagnosis (4/27/92) of Carcinoid Tumors (Cancer) and Carcinoid Syndrome. Apparently, average diagnosis for this condition is five years and I probably had this malady for many years prior to proper diagnosis since many of its symptoms were manifest during that entire period.

The Carcinoid tumor(s) (cancer) of the small intestine (and probably lungs) had metastasized to (at least) the liver and spleen where I had several large tumors and many small ones (over two-dozen tumors). I had, for some time, been experiencing Carcinoid Syndrome including general body weakness and malaise; general pain; specific tumor pains; extreme diarrhea; nausea; vomiting; uncontrolled sleep (Narcolepsy); uncontrolled falling; dizziness; blurred vision; blackouts; leg, foot, arm, hand and other muscle cramping; decreased lung capacity; flushing in the upper torso and head; headaches; uncontrolled loss and gain of weight; uncontrolled coughing; sleep "sweats"; uncontrolled chills; mental lapses; forgetfulness; kidney and other pains; heart fluttering and palpitations; light sensitivity and burning eyes - all of which I had for years been reporting to my various physicians including internists, pulmonologists, neurologists, cardiologists and dermatologists.

The pain and disabling affects of the Carcinoid tumors caused me finally, on July 1, 1992, to stop all work and file for total disability with the Social Security Administration. My claim for total disability was granted October 26, 1992, and social security disability payments to me began on December 1, 1992.

In early January 1994, I was diagnosed as having suffered several strokes on each sides of my brain. Tests were conducted to determine the causes of these strokes and recent blackouts (beginning 6/93). The physicians concluded the probable cause to be the Carcinoid Syndrome.

I discontinued my chemotherapy regimen in the Spring of 1997 as the tumors no longer showed in CT-scans or octreoscans. In the Spring of 1998 a couple of small tumors began to show in the various scans done every 3-6 months. I continued to "monitor" the growth of the tumors and have had various treatments, as described above, since.


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