Meet Dean Austin. After battling cancer in various parts of his body, including rare and highly aggressive Merkel Cell Carcinoma, countless rounds of chemotherapy and radiation - genetic profiling and new treatment options are helping Mr. Austin. His story and mix of medicine and faith, and he calls it “Trials and Tender Mercies.” Mr. Austin submitted this article from his personal history, and we’re honored to share it here. From the Intermountain Precision Genomics Team, we honor you, Dean Austin! Thank you for sharing your story!
Just a normal kind of day. The telephone rings, and a nervous sounding voice on the other end says, "I have some bad news. The biopsy report regarding the growth on your neck shows that it's a very rare, nasty, very aggressive cancer called Merkel Cell Carcinoma*. I'm referring you to Dr. Vaughn, a head and neck surgeon who'll work with you to remove the cancerous growth." It could no longer be classified as a "good day."
Twelve months earlier at my regular six-month visit to the dermatologist, I called the doctor's attention to a small pimple like growth behind my left ear. Due to the removal of several Basil Cell and Squamous cancerous growths over the past 33 years, I was well acquainted with dermatologists in Texas, Virginia, California and Utah. "It's nothing," was his response to my query. Six months later, the growth had not gone away and I again asked him to take a look at it. I received the same response from him as the last time.
Why did this little "pimple" bother me so? It didn't hurt, didn't rub on my clothing, and I was unable to see it, but for some reason, it just bugged me. As it turned out, it was a "tender mercy"- a prompting by the Spirit.
It was during the next six-month visit that I brought it to my dermatologist's attention for the third time. His response was the same, "It's nothing." This time I told him, "It seems to be growing."
"Well, let's take a biopsy, just to make sure," he responded, seemingly to appease my continuous questioning of his judgment call. Waiting for the biopsy results did not concern me and when I heard nothing for nearly three weeks, I nearly forgot about it.
Then came the phone call! Everything was in rush mode. Within days, a scan was completed and surgery scheduled. The cancerous growth was "very small," but it had spread to the sentinel lymph node. The planned surgery would be rather complicated, removing all the lymph nodes and tissue down the left side of my neck, a little over twelve inches. Care must be taken not to damage critical nerves, etc., along the way.
Prior to surgery, I received a Priesthood Blessing from the Branch Presidency. "I'm sorry, the words would not come to me that you would be healed immediately. I am afraid you have some hard times ahead," so confided the Branch President at the end of the blessing.
July 5, 2013
The surgery went well, the Dr. Gardiner, filling in for Dr. Vaughn, had done a great job. He explained the procedure and then said, "I think we got all of the cancer and found no evidence of it beyond the sentinel lymph node, but I would be naive to think it's impossible for it to be elsewhere." He suggested that after the wound healed it might be a good idea to have radiation treatment of the area as an added precaution. We decided to do it.
Pretty well recovered from the surgery, I was now viewing stunning scenery aboard a cruise ship. We'd previously scheduled a Scandinavian family reunion/cruise, starting in Copenhagen with stops in Norway, Germany, Denmark, Russia, Sweden, Finland and Estonia. At the end of the cruise Paul, Robyn, Sean, Dean, Donna and I traveled in Poland. It was fantastic!
Returning home in September, the radiation treatment began with Dr. Ashton. It encompassed 28 treatments, one each day except for the weekends. In order to perform the treatments, it was necessary to program the equipment precisely to provide the exact amount of radiation to each segment of the area in the neck, being careful to avoid damaging critical areas while killing the cells, which could be infected. It was also necessary to have the neck and head placed on the table the same each time, which meant the creation of a plastic mask that fit tightly over my head and neck and fastened tightly to the table.
Another disappointing telephone call. The scan completed a few days earlier now revealed a cancerous growth in the spine, T9. I was referred to Dr. West, a spinal specialist for a detailed scan and a biopsy to ensure it was indeed cancerous and of the same variety. He inserted a drill/needle through the outside of my spinal column in order to obtain a biopsy of the tissue inside.
It was confirmed. The cancer was indeed back, and now considerable confusion and wasted time took place in figuring out what to do about it, and who was to do it. Finally, the baton was again passed to Dr. Ashton for radiation treatment. This time, to attack the spot in the spine.
This time a body cast was made to hold me in position and the machine was programmed. Since there were many vital organs to work around with the radiation rays, it was a tricky job. They did well again and in one treatment, they were able to remove the growth in the spine. All was well!
Another scan, another disappointment! The lesion in T9 was gone, but this time the cancer showed up in a lower spot in the spine (L4) and also in the liver. The battle was on in full array. It was now necessary to attack it with chemotherapy. First, my back was bothering me, likely the result of the spinal tumor. It was decided to first remove that tumor with a radiation treatment and then we would start the chemotherapy treatment. The radiation treatment was the same procedure as before.
Chemotherapy: Round 1
The treatments (a one hour infusion of Carboplatin followed by four days of chemo pills (Etoposide), were scheduled at four week intervals for four treatments. Dr. Lincoln Nadauld, Medical Director of Intermountain Precision Genomics, thought this had the best chance of working. The side effects were nasty leaving me short of breath, weak, shaky, a bit woozy at times, no appetite and pretty much worthless. Fortunately, I wasn't affected nearly as much as many who go through this procedure, and I didn't have the bad nausea experienced by most people.
By this time the family members, neighbors, friends and church members were all quite concerned. We heard pretty much daily that people were praying for us and my name was placed on temple prayer rolls in several places in the United States. In November, DeVerl and family came to visit. Before they left, he gave me a beautiful priesthood blessing.
NOTE: *Corresponding with this timetable and unknown to us at the time, FDA had approved in 2014 a new anti-body treatment for use primarily in treating melanoma cancer called Keytruda. The drug was made available in the first few months of 2015. Several more tender mercies.
Chemotherapy: Round 2
January 29, 2015
A scan revealed that things were getting worse. The chemo wasn’t working! It showed I had seven cancerous spots, in my neck, and several in my liver. They were spreading rapidly.
On February 4, 2015, the treatment changed to a different type of chemo (Doxorubicin). It wasn’t as likely as the first to have the desired effect, but still offered a pretty good chance. Again, they were infusions lasting an hour each on a four-week basis.
The side effects were about the same, but by this time, walking out to the mailbox was exhausting. I wasn’t able to do a lot around the house. To make things worse, I caught a cold to contend with on top of the chemo side effects. It lasted a bit longer than a cold usually would and was very uncomfortable. The coughing was very bad. In the process of all the coughing, I tore a muscle in the abdomen. Thinking it was a gall bladder problem, we made a trip to the emergency area of the hospital.
Anti-body (Keytruda) treatment
The scan on April 23 was startling! I now had 19 spots in the liver, neck, lymph nodes and other locations. Most were scattered throughout the liver. This chemo was not working either, and the outlook was dim.
Dr. Nadauld suggested the possibility of using a new treatment that had just become available about 2 1/2 months earlier. Administered like chemo (by infusion) - but technically not a chemo, it’s an anti-body. This treatment earmarks the cancer cells so that one's immune system can identify it as a bad cell and attack it. It had never been tried on a Merkel Cell Carcinoma. Dr. Nadauld believed based on his own studies and the genomic test that this infusion treatment had a chance of working.
We decided to give the new treatment a chance. Yet another tender mercy!
I had all but given up on additional treatments. In Dr. Nadauld's opinion, if this treatment didn’t work, or if we opted not to use this treatment, my remaining life term was about six months, due to the rapid growth, spreading of the tumors, and the fact that the main target was the liver.
Things were about to change! Seven to eight weeks after the start of the new treatment, Dean, Jr. had been visiting us for a few days in the month of June. We went out to dinner at Café Rio just before he headed home. For a few days, I had been feeling the growths on my neck and it seemed something was happening. I thought they were getting a bit smaller. For sure they weren’t getting bigger.
By the time of our farewell dinner a Café Rio, I felt confident enough that indeed the growths were getting smaller. I revealed this to Donna and Dean. The reaction was explosive and I wondered if I should have waited a few minutes until everyone was through eating before saying anything.
In an appointment with Dr. Nadauld a few days later on July 1, I revealed the good news to him. He examined the growths with his fingers and confirmed my belief. He was ecstatic! The next scan was scheduled for July 17.
On July 22, the day before our scheduled family reunion at Sundance, the results of the scan were revealed. All but four growths had disappeared from the scan and those four had been reduced in size by 60 - 70%! The cancer cells were on the run! This good news made for a very joyous family reunion.
Both Donna and I bore our testimonies in Fast and Testimony Meeting at church to thank our Father in Heaven for this blessing and to thank all for their support and prayers.
Dr. Nadauld was surprised and excited as I told him of the recent miracle. All appeared to be going well and he wasn’t able to find evidence of the tumors that had been in my neck. The real surprise was the absence of pre-cancerous Keratosis and "barnacles" on my hands, arms and legs and ankles.
For the past many years, I’ve had an abundance of these growths. As a result, every six months a visit to a dermatologist was in order to have them frozen, or when they’d developed into Basil Cell or Squamous cancer, surgically removed. The pre-cancerous cells were far too numerous to get, but a small portion of the biggest ones were frozen each time and even those had a habit of coming back after treatment.
The "barnacles,” though unpleasant, weren’t a threat - so no treatment was given. The new treatment had removed all of these growths. I hadn’t had such smooth skin for at least 35 years! Sometimes, tender mercies aren’t recognized at the time, but through this process, I have been made more alert and realize they are about us very often.
The next scan was scheduled for October 14. Meanwhile, treatment number eight was given.
October 7, 2015
”Good news, and not as good as could be news,” Dr. Nadauld told us. “The scan revealed that the four spots in the liver were still there, but once again, they had significantly reduced by another 50%.”
Dr. Nadauld also advised us that another doctor had asked him for advice about a patient with the same kind of cancer. In their case, the cancer had also spread to various locations in the body, but not as bad as mine. As a result, the patient was placed on the Keytruda treatment. The results were also great. The cancer had disappeared. I’m looking forward to the day when I see the same results. Meanwhile, I had treatment number nine.
December 10, 2015
Continuing favorable news! The number of lesions reduced to three marble size objects, which still showed up in the latest scan. The largest one was slightly reduced, but the other two are essentially the same size as in October. Dr. Nadauld believes there are a couple of possibilities in this no-change situation. It may be scar tissue, or if they’re cancerous, they appear to be inactive. The doctor said he had a dream about me the night before we visited him. When he awoke, the thought came to him that he should take me off the medication for now. I didn’t have an infusion. Instead, a follow-up scan was scheduled in about two months to see what that reveals.
December 22, 2015
Over the past several months, the scans consistently revealed that disk L4 in my spine was damaged. It seemed the cancer caused the disk to be crushed, and I’d had pain in that area of my back for several months as a result. Dr. Nadauld referred me to a Spine Clinic. On December 22, I underwent a new type of surgery to try and stem this problem. This entailed pounding a needle into L4 and injecting a type of fast hardening cement into the damaged area of the disk to stabilize it and prevent additional damage. The surgery went well.
Intermountain Healthcare Precision Genomics personalizes treatment for cancer by testing for all types of genetic mutations. The ICG100 test offers genetic testing for patients who have failed traditional standard of care treatment options.
To learn more about Intermountain Precision Genomics and this type of personalized medicine, visit: precisioncancer.org.