Janet and Ron Simkins
After 26 years in the corporate world, Ron Simkins retired early so that
he and his lovely wife Janet could travel, spend more time with their
grandkids, and enjoy the fruits of their labor. They bought a house in
a golf resort community near Palm Springs. Their calendars were packed
with golf, tennis, working out, bridge, gardening and other activities.
Ron's pursuit of fitness was more than a matter of keeping up physical
or social appearances; he planned to live a very long and healthy life,
and hoped to avoid heart disease and other troubles through a discipline
of exercise and diet. His weekly regimen was more Olympian than retiree:
five days of cardiovascular training and three days of weightlifting,
intermixed with golf and tennis two to three times per week. The gym he
belonged to named him "Fitness Member of the Month."
In early May, 2002, a few short days after public recognition of his devotion
to health and fitness, Ron Simkins was privately advised that he had a
rare and deadly form of cancer, and in that moment he saw his life's
work collapsing like a house of cards.
Ron and Janet worked hard, they saved, they built a beautiful retirement
home, they took care of their bodies, and they cherished each other and
their family. Ron served his country in the US Navy. Little could they
know that a lifetime of devotion to "the rules" was subverted
years ago, when Ron was poisoned by asbestos exposure. Ron Simkins has
malignant pleural mesothelioma.
AN ARRAY OF SYMPTOMS, A CLOUDY PICTURE
On October 12, 2001, Ron and Janet went on a Caribbean cruise. After returning
from vacation in November, Ron returned to his workout schedule. He developed
a pain on his left side and felt that he had pulled a rib cage muscle.
The pain did not go away. On January 4, 2002, Ron developed a fever. Like
most athletes, he put off going to the doctor as long as he could, confident
that he could shake whatever was ailing him. His confidence was misplaced.
Five days later, he finally consulted with his family physician.
Ron's doctor took a chest film, which showed a large cloud over the
left lung cavity, suggesting that the left lung was filled with fluid.
The working diagnosis was pneumonia, and the doctor prescribed antibiotics
for ten days. Ron was told to return after completing the course of medication
for a follow-up chest film.
Ron and Janet on their favorite course
Ron returned on January 18. The film showed a decrease in the amount of
fluid, but nonetheless some fluid remained. His doctor seemed unconcerned
and recommended "watchful waiting." For the next two months,
Ron continued to feel sluggish, and his films continued to show what was
clearly an abnormality, which over time progressed. Finally, Ron's
family physician referred him to a pulmonary specialist.
On March 13, Ron had a CT scan which revealed a moderate amount of left
pleural fluid that measured up to five cm in thickness. There was left
pleural thickening, and some evidence of atelectasis (collapse or partial
collapse of the lung). On March 27, Ron had a CT-guided aspiration of
the left pleural effusion. The procedure removed 800 ccs of fluid. Ron's
pulmonologist might have removed more, but detected hemorrhaging and terminated
the procedure. The presence of blood was suspicious for cancer, but the
pathologist who looked at the fluid found no evidence of malignancy.
Throughout April, a cloud continued to hang over Ron's medical picture.
He was coughing and felt fatigued. His doctor again prescribed antibiotics
for 10 to 14 days. But the fever returned again, along with a decrease
in appetite and an overall weight loss of 10 pounds. Something was terribly wrong.
FINALLY, THE DAWN OF A TERRIBLE TRUTH
Ron's doctors increasingly discounted an infectious or inflammatory
process. He was then referred to a thoracic surgeon who recommended a
thoracotomy, decortication and pleurodesis. However, neither a PET scan
nor a tissue biopsy was performed in advance -- two procedures which could
have shed light on the source of Ron's health problem. Ron had surgery
on May 1, at which time his surgeon found that the intercostal spaces
had been obliterated by what he described later to Janet as "scar
Additionally, the surgeon found a 7mm thick fibrous peel on the left chest
wall. He removed as much of the peel as was possible but later advised
the Simkins that he was unable to remove the "scar tissue" abutting
the esophagus and aorta. He then "cross-hatched" the lung in
an attempt to expand it, drained the pleural effusion, and insufflated
talc in the pleural cavity.
After surgery, the thoracic surgeon informed Ron that the "scar tissue"
was the worst he had ever seen. He said it was so bad he could not peel
it off. In order to cut out what he could see, the surgeon removed a rib.
He sent the "scar tissue" to the pathology laboratory. After
the surgery, again, there was no mention of "cancer" in the
differential diagnosis. Two days later, the surgeon came to visit Ron
in his hospital room. He called the pathology lab to learn the results.
According to Janet, the surgeon was visibly shocked when he got the news
the "scar tissue" was not only cancer, but a particularly rare
and heinous form of cancer known as "malignant mesothelioma."
The surgeon referred Ron to an oncologist and radiologist.
FROM LOCAL TUMOR BOARD, TO DR. CAMERON, TO ALIMTA
On May 4, Ron met with his oncologist. Because of Ron's youth and vigor,
as well as the location and inoperability of the tumors, the oncologist
advocated an aggressive therapy, but he did not have a particular regimen
in mind, as he had little experience with mesothelioma. He indicated he
would take Ron's case to the hospital's "Tumor Board,"
which would make a recommendation as to the best course, both for the
patient and for Ron's HMO.
The Simkins Family - July 7, 2002
Leslee, Ron, Janet and Scott
Ron was released from the hospital on May 4, after his chest tube was removed.
Ron recuperated at his home on his favorite recliner, with vials of Oxycontin
and Vicodin within easy reach.
On May 23, the Tumor Board recommended a repeat CT scan of the chest and
a CT scan of the abdomen. Apparently, this quasi-official administrative
decision was a prerequisite under Ron's HMO plan. The Board determined
that because Ron's tumor was attached to his esophagus and aorta,
further surgery was not recommended, and radiation was ruled out. The
Board discussed a chemotherapy plan consisting of Cisplatin and Gemzar,
even though a few days before at the American Society of Clinical Oncology (
ASCO) meeting several prominent oncologists touted Alimta as the
new standard of care for unresectable mesothelioma.
Ron and Janet began researching their options. Palm Springs offered many
amenities and opportunities for fun under the sun, but it was becoming
painfully evident that local doctors were not armed to fight mesothelioma.
The Tumor Board, to its credit, had advised that UCLA might have a program
for patients like Ron. That is, even though they candidly admitted the
tumors were "inoperable," perhaps another surgeon with greater
experience would reach a different opinion.
So Ron and Janet set up an appointment with
Dr. Robert Cameron at UCLA. Dr. Cameron is widely regarded as an expert in treating mesothelioma
using pleurectomy / decortication, radiation and, if necessary, chemotherapy.
Dr. Cameron's office graciously agreed to set up an emergency meeting
consultation with Ron for June 3. A few days before, a CT scan revealed
that Ron's left lower lung had collapsed, and the tumors encasing
his left lung had progressed.
On June 3, Ron and Jan met with Dr. Cameron. After reviewing the medical
records, Dr. Cameron was concerned about the unintended consequences of
the May 1 surgery. Ron's surgeon did not know during the operation
that the tissue he was cutting and peeling was malignant -- he thought
it was "scar tissue." The question was therefore raised whether
the procedure may have nicked the lung, diaphragm and/or other organs,
thus opening a porthole for the tumor's spread.
A larger question was also raised about the techniques used or not used
to reach the final diagnosis. Many times a surgeon will use PET scans
and the tissue biopsy, among other tests, to narrow down the differential
diagnosis. Unfortunately, not even a generic diagnosis of cancer was reached
until two days after Ron's surgery.
Ron and Janet naturally have been disturbed by the apparent missed opportunities,
but they have been undeterred. What's done is done, but now what?
Let's talk about solutions.
Son Scott, Ron, grandson Anthony, Janet, daughter Leslee, grandson Michael,
Dr. Cameron suggested Alimta on a compassionate use basis. Alimta (pemetrexed disodium) is an antifolate
that, in Phase III clinical trials in combination with Cisplatin, showed
a 45% response rate in patients with malignant mesothelioma. The drug,
manufactured by Eli Lilly, targets folic acid, which is crucial for tumor
growth. Results of the completed Phase III trials were presented at the
38th annual meeting of the American Society of Clinical Oncology (ASCO)
in Orlando, Florida, in May 2002, and have since been submitted to the
Food and Drug Administration (FDA) for approval. Dr. Cameron wrote a letter
to Ron's oncologist advocating that he contact Lilly about providing
Alimta for Ron outside of its phase III protocol.
Thankfully, on June 19th, Lilly agreed to offer Alimta on a compassionate
use basis. Finally, a ray of hope. The Simkins are proceeding forward
with eyes wide open. They understand that Alimta is not a magic bullet
or panacea. They hope it lives up to its potential as a life-extending
chemotherapy" The plan is to attempt to shrink the tumor with Alimta
and Cisplatin so that Dr. Cameron can later operate.
Before starting the regimen, Ron underwent a blood transfusion, because
he was slightly anemic. On June 27, Ron had his first round of treatments.
He is scheduled to have five more roughly every three weeks.
There's no way to sugarcoat it: contrary to press releases touting
relatively mild side effects, the regimen can produce harsh consequences.
Ron was very nauseated after the first infusion. The recurrent vomiting
left him dehydrated, so he wisely sought treatment at the hospital, where
he received an I.V. drip. The bad news was the doctors predicted nausea
for at least five days. The good news is the doctors will be prepared
for the next round to prescribe anti-nausea medication.
Although there is no "known" cure for mesothelioma (Janet emphasizes
"known"), she says if there is a cure to be found, she will
do everything possible to find it. She is on a mission and spends much
of her time searching the Internet, and investigating all of the possibilities
sent by friends and family. She says "after 38 years of marriage,
I'm not going to let him go without a fight!" People speak of
alternative medicine; Ron and Janet call it "complimentary"
medicine, and are trying other things in addition to the conventional
chemotherapy. And, their faith in God is a big part in Ron's recovery.
They truly believe faith and hope are very powerful, and that miracles
THE MAN UNDER THE BLANKET
The Simkins have been careful planners. They planned to retire from the
hustle and bustle of the corporate world at the age of 55. They planned
to travel the world; Ron is "75% Swedish" and has always wanted
to visit the homeland of his ancestors. They planned to enjoy and stretch
out their lives by living in a golf resort community where they could
exercise their minds and bodies.
Not surprisingly, they live in a house that is a testament to careful and
wise planning. Their home is elegantly and comfortably furnished in an
understated African safari theme. The art work is original and captivating.
The great room sweeps the kitchen, dining room, bar and living room under
one high ceiling. Tall glass windows and sliding glass doors showcase
a hot tub, beautiful landscaping and an immaculately groomed golf course,
where (no kidding) bunny rabbits
Now the Simkins are using that same penchant for careful planning to overcome
a malady that shows no respect for a life well-lived. After overcoming
the shock of the diagnosis, and the wall of denial that an intelligent
person naturally builds around himself -- "this can't be happening
to me, I've done everything right" -- Ron and Janet have channeled
their considerable energy into fighting back. They have done their best
to keep their emotions in check, and they continue to visit their grandchildren
in San Diego. They recognize that normalcy itself is strong medicine.
Ron's recognition for his devotion to fitness came with this praise:
"Congratulations, Ron: you are an inspiration to all of us."
At the time, no one knew that an insidious cancer was incubating in Ron's
chest. At the time, Ron's peers could see him peddling vigorously
on the exercise bike, or climbing on the Stairmaster, or exploding his
arms upward on the bench press -- an athlete pushing himself up to and
beyond his limits.
But now we see something else: a man in a chair under a blanket, an intravenous
line running into his arm from a bag that holds a toxic but potentially
life-saving combination of drugs. The man dreams about the joys of golf,
tennis, running and pumping his muscles, but the dream is broken by a
dark curtain of melancholy slowly lowering over him. The man fights back,
not with fist and bone or even drugs, but with the same powerful forces
that have helped him excel as a father, husband, manager and friend. And,
after a moment of reflection, the man in the chair under the blanket with
the I.V. smiles.
*** POSTED JULY 18, 2002 ***
An Update -- 8/19/02 (From Janet)
To all of you who have emailed me or just have questions about Alimta.
My husband Ron is being treated with Alimta (Alimta/Cysplatin, with B-12
and Folic Acid). He just had his 3rd of 6 treatments on Friday (8/16).
After his first treatment, he got very sick--vomiting, dry heaves, etc.,
and had to go back in for an I.V. of hydration and anti-nausea (Adavan?),
which got him back on track. Starting with the second treatment, the onc.
scheduled him to come back for those same hydration/anti-nausea I.V.'s
for 2 days after every treatment. This has helped tremendously. The oncologist
also gave him Zofran to take by mouth for several days, and Compuzine,
if needed. Ron is the first patient to use Alimta at our cancer center,
so we are more-or- less finding our way with what works.
His blood counts are hanging in there. The WBC, Platelets and RBC are in
the normal range; the Hgb is slightly low.
After treatment #2, and giving himself 5 or 6 days to get "back on
track" we took a 10 day vacation to see our son and some of our old
friends. Ron felt really good and played a couple rounds of golf with
our son. We are hopeful he continues to feel so well.
In addition to this treatment, we include prayer, positive thinking, good
nutrition, and the support of friends and family in our fight against
this horrible disease.
I again want to thank you for your thoughts and prayers; and of course
all of you are in my prayers every day.
An Update -- 9/15/03
Ron completed his sixth and final cycle of Alimta and Cisplatin in October
of 2002, chemotherapy which caused severe nausea and repeated vomiting
so severe that Ron would lose 10 pounds at a time and require intravenous
rehydration. This led to a last desperate attempt at surgical removal
of the tumor in December, 2002 by one of the handful of surgeons in the
country recognized as competent in treating mesothelioma, Dr. Robert Cameron.
Dr. Cameron opened Ron up using the same incision site used by the thoracic
surgeon who had originally "cross-hatched" Ron's pleura.
He removed more rib, because the surgery was going to require more room
to maneuver. And then he encountered a whitish, yellowish, hard surface
that felt "almost like cement" -- the mesothelioma tumor. He
started off by trying to dissect the tumor off the inside of the ribcage,
all the way up to the top of the chest. And in doing so, he encountered
several areas where it was actually physically impossible to remove the tumor.
Dr. Cameron literally took a chisel, like one might find in a hardware
store, and put his 200 pounds of weight against the tumor, and could not
fracture the tumor from the rib. At this point, Dr. Cameron had spent
an hour to 90 minutes trying to accomplish what normally could be done
in 15 to 20 minutes. It was pointless to continue. Dr. Cameron aborted
the procedure, and sewed Ron Simkins back up.
After recovering from the surgery, Ron slowly regained strength. He managed
to get back out on the golf course, and even the tennis court -- at least
until August, 2003, when he began to suffer from a bulging disc in his
back, and other, more troubling symptoms. His appetite now is poor, and
he is on Vicodin 24/7. Dr. Hedy Kindler has recommended treatment with
an experimental drug called SDX102.
An Update -- 10/19/03
We have been on the go, back and forth between home and San Diego, with
doctor appointments both places. Last week we were at Scripps. We now
have 2 oncologists there. One is a regular onc, the other is a radiation
onc. They are conferring with Dr. Hedy Kindler. We consulted with her
in Chicago, a few weeks ago, after we fired our local onc. who was non-responsive.
Dr. Kindler knew of 2 oncologists out here, one at USC, the other ar Scripps,
so we decided to try Scripps. Our daughter and her family live in San
Diego....and....our daughter is an RN, all of which will be helpful.
Ron had several scans last week and it showed his tumor is growing and
spreading. There are new "spots" up and down his spine, as well
as a large mass just below the clavicle. The radiation onc recommended
radiation to 2 areas of the spine where Ron is having pain, and, to the
area below the clavicle which is causing severe nerve problems to his
left arm and hand. They cannot radiate all the spots on the spine, as
that would cause the spine to crumble. The mass causing the nerve pain
needs quick attention or he could lose the use of his arm. Radiation will
start this week at Scripps. After completion of radiation he will immediately
go on chemo--gemcitibine. Anyone here had any experience with gemcitibine?
He has already had the best chemo--alimta/cisplatin, which kept him stable
for 10 months.
The first of Sept. he went on Oxycontin for pain. The Oxycontin took his
appetite away, and he was fatigued. Subsequently in a matter of 6 weeks
he lost 30 lbs. He's off the Oxy, and now on Methadone, and his appetite
has improved. One of my friends here on the listserv recommended Megace
which also helped his appetite. I got some Instant Breakfast and put protein
powder in it, and he seems to like it ok. At night he has a protein milk
shake. But he still looks bad because of all the weight he lost. He's
also on a steroid for about 15 days--dexamethasone. He has so many meds
I had to make a chart, to keep track.
It's been so heartbreaking to see him waste away. I am praying he can
build himself up again. Dr. Kindler didn't want to give him a trial
drug because she didn't think he was strong enough right now, and
with winter coming it would be too hard on him to commute from California.
He's got a lot to go through yet, treatment-wise. I am just amazed
at how brave and positive he still is, after getting the results of the
latest scans, and feeling so lousy. And, he always wants me to minimize
his condition to family and friends----he doesn't want them to worry.
When someone asks him how he's doing, he always says he is good. I
am trying to remain positive, but it's hard. I MUST be positive around
Ron--for his sake.
I hate bringing this kind of news, but hopefully there might be something
here of help to others. You never know. I continue to pray each day for
all of you.
Love and hope,
Mr. Ron Simkins passed away on December 8, 2003
* * * * * *
Known for his friendly, outgoing personality Ron passed away Dec. 8, 2003
at age 62, surrounded by his adoring family. He died from Mesothelioma,
a rare cancer caused by asbestos exposure while serving in the U.S. Navy.
Ron and his devoted wife Janet, were married over 39 years enjoying life
to the fullest. Before moving to Rancho Mirage in 1998, they spent 21
years in Novato, California where Ron had retired after a 26 year career
with TRW. Through the years they were always involved in the numerous
activities of their loving children, Leslee & Scott.
Ron was a remarkable man committed to God and family, and loved by so many.
Besides his family, his passions included golf, tennis, bridge and his
beloved grandsons Anthony & Michael. He was an active member of Sacred
Heart Catholic Church, and the Mission Hills Country Club where they lived.
Family and friends are invited to attend a funeral mass at Sacred Heart
Catholic Church in Palm Desert, on Friday, December 12, 2003 at 9:00 am.
A rosary will be recited at Sacred Heart Church at 7:00 pm on Thursday,
December 11, 2003.
In lieu of flowers the family suggests memorial contributions be made to the
Mesothelioma Applied Research Foundation (MARF), 1609 Garden Street, Santa Barbara, CA 93101 (Ph: 805-560-8942).