My Personal Noid Story

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My Personal Noid Story

Larry's Carcinoid and other Medical Biography

Noid’s name: Lawrence W Chinnery, Sr. (Larry)

Home Location: Rockville, Maryland
Date of birth: September 18, 1938

Onset of symptoms: 1972 or 1976 - Age 34 or 37 (this is debatable).

Initial Symptoms: Unexplained falls, 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 diagnosis and treatment:

1972: Unexplained falls.

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:

1972: Undiagnosed - Physician: Internist.

1976: Borderline hypoglycemia - Physician: Internist.

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

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

For 15 Years: I was also told by several physicians over a fifteen-year period (prior to 1992) to see a psychiatrist - that it was “all in my head” - even when I coughed up blood in their offices..


Change in my quality of life: Significantly worse.


Treatments used after my cancer diagnosis and their 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 Fluorouracil (5-FU), and 1000 mg Streptozotocin(r) (begun 9/92), plus 15 mg (x 8 or 10) ZOFRAN and 10 mg Decahedron (Dexamethasone Sodium Phosphate -discontinued, for the most part on 7/93) to help control nausea and vomiting.

Sandostatin I have also self-injected (subcutaneously on a daily basis, since June 1992) Somatostatin 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 on me, 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 for carcinoid 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 to be a very effective treatment for me 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, spleen, 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 canceled the chemoembolization and undertook to do some more systemic chemotherapy using Xeloda.

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

September, 2005: The pains in my lower spine and hips have returned with a vengeance. 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 Medical History:

NOTE: 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 to this day.

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 August of 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 mid-December 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 by the examining physicians. 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 primary physician) 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, 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 effects 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 (I was still taking daily Sandostatin shots) done every 3-6 months. I continued to "monitor" the growth of the tumors and have had various treatments, as described above, since then.

From Sept 2005 to Larry’s death and end comments added by Linda Larry’s wife/widow.

September 2005: The pains in my lower spine and hips have returned with a vengeance. I was able to take another infusion of Samarium153 soon, but it provided only two weeks of relief instead of the six and nine months the earlier treatments provided. I then got a little more relief from laproscopic surgery to remove my gall bladder. At that time my veins had become so hard to find that I gave in and got a port installed in my upper chest. Eventually I admitted to my wife that I should have done this 15 years earlier as it sure made blood tests and intravenous chemotherapy easier.

Winter 2005-2006: Fitting my motto that “you can still have some more fun yet”, my wife and I took a western Caribbean cruise. I rented an electric scooter that was delivered to the dock. Soon afterwards, my oncologist proposed that we try some newer chemotherapies approved for some other cancers but not yet for carcinoid. The Avastin turned me into some kind of zombie. I perked up soon after stopping it. Then we went to straight Xeloda without adding Temodar this time. I was feeling a lot better, and we even planned two vacation trips for June. But then oops, my blood counts were too low so I had to take a break from chemotherapy. I would check back every week or so, but still—no go. Then came June 1, 2006. The doctor ordered additional blood tests and informed my wife and me that my bone marrow was now “shot”, presumably due to the bone metastases. He advised hospice. After about 10 days of home hospice visits, I was taken (by a bumpy and jerky ambulance) to inpatient hospice.

Larry      

 Linda speaking now (Larry’s wife/widow): Larry chose inpatient hospice so (1) I would not have the memory of him dying at home and (2) he could have better pain control. We were both grateful for the friends and family members who visited, including members of the D.C. area carcinoid cancer support group. He entered a coma on June 20 and died on June 21, 2006.

Linda      

 

 

This page was last updated January 22  2015

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