“You never know how strong you are, until strong is the only option you have.” Words to live by for Bill Miller of Claflin, Kansas. The fourth generation owner of Millers of Claflin was recently diagnosed with non-small cell lung cancer, adenocarcinoma, RET mutation positive, Stage 4. It's a mouthful and it’s been quite a fight.
It started with a lingering cough that Bill had for a few weeks. During a routine physical back on May 19 at Clara Barton Medical Clinic, PA Philip Barnes listened to Bill’s chest, heard a little wheezing, and ordered a chest x-ray. The cough and the wheezing was a little out of the ordinary for Bill, as he typically is in excellent health and very active. He’s not a smoker and makes a point to avoid smoke. A call later in the day confirmed that there was something. So the next day, Bill went in for a CT scan of his lungs. Bill’s wife of 38 years, Tami, who kept a journal through this ordeal, says, “There were two masses in the lower left lobe and then hundreds of little nodules in both lungs. When I look at his CT scan, it looks like a snowstorm in there compared to a normal lung.” A needle biopsy showed cancer cells, but they didn’t know what kind.
Bill and Tami called their dear friend Dr. Robin Durrett, who practices at Ellinwood Hospital and Clinic. Dr. Durrett set them up to see Dr. Mark Fesen, Medical Oncologist at Central Care Cancer Center in Great Bend the next morning. Bill’s first CT scan also shown something on his thyroid. An ultrasound and a biopsy showed cancer cells there as well.
A second opinion, and bronchoscopy was performed in Overland Park to test the hundreds of little nodules in his lungs. All those nodules turned out to be the same type of cancer as the two masses in his one lung. At that time, it was determined to be Stage 4 lung cancer, due to the cancer metastasizing to the thyroid. However, it was still to be determined what the mutation of the cancer was, so genetic blood tests were ordered.
On June 11, Dr. Fesen told Bill he had non-small cell lung cancer, adenocarcinoma, with RET mutation, Stage 4. Non-small cell lung cancer is a pretty common cancer for non-smokers, versus small cell lung cancer. Dr. Fesen says, “Only one or two percent of all non-small cell are RET mutation positive.”
RET is an abbreviation for ‘rearranged during transfection’. “About a third of lung cancers have mutations that are driving the growth of the cancer and that’s one of about ten different mutations that we could search for during testing. These are mutations that when you find out what DNA mutation occurs, in reality, that’s what is driving the growth of malignancy. Bill’s was a RET mutation positive malignancy. It’s only a mutation in the genes of the malignancy. It’s not in the rest of his body. The mutation is in the cancer cells,” said Dr. Fesen.
Bill was Dr. Fesen’s first patient with this RET mutation. “We’ve seen other mutations out there, but this was a first. There’s a new drug that just came out to help treat this mutation.” And that new oral drug, Retevmo from Lilly Pharmaceuticals, was just approved by the FDA on May 8.
“The first couple of appointments, I’ll be honest, it was just difficult. It just was bad news, after bad news, and just difficult. But then, once we knew what we were dealing with, everybody took on a game face and you could just see it. And I don’t mean just me, but Dr. Fesen and the whole staff sprang into action. The fight started right then and there,” said Bill. Tami added, “I can’t say enough about all of them at Central Care Cancer Center. They are amazing.”
Since there was a new drug, to help fight a fairly new cancer mutation, and not too many people in the area, if any, have been diagnosed with this RET mutation, Bill chose to wait on receiving any treatment until after he visited a specialist at MD Anderson. There have been a couple of other patients seen at MD Anderson with this similar RET mutation to Bill’s.
While Bill and Tami waited to drive to Houston, they understood that there might be a problem in securing this new FDA approved drug, Retevmo, and whether their insurance, Blue Cross Blue Shield of Kansas, would even cover it. Dr. Fesen and his staff reached out to Lilly Pharmaceuticals. Tami went online to Lilly’s website to try to get a savings coupon for the drug. Bill and Tami did receive a letter from BCBS saying ‘it’s not in our formulary and we don’t have to review this case for six months’. That meant, Retevmo was not included on the insurance company’s ‘formulary’ or list of covered medications. A medication may not be on the formulary because there is an alternative proven just as effective and safe, but is less costly. There was no other alternative to Retevmo.
“According to them, what they wanted him to do was what they called the standard of care. Well the new standard of care was to use Retevmo. The old standard of care was to put a port in and do a combination of three chemo drugs and immunotherapy. Whereas with the Retevmo, we were looking at an oral medication with a possible 85% success rate, “said Tami.
The level of frustration was mounting as Bill’s health was declining. Bill and Tami wondered how did this happen, and could it have been prevented? Typically, an avid smoker should be screened regularly, but as Bill was a non-smoker, there weren’t any immediate symptoms to warrant a screening. “We had our water checked because we're out in the country and we have well water. We did a radon test in our house and that all came back fine. So, we didn't know what else to check at that point,” said Tami.
Tami and Bill pulled out all the stops in trying to get Retevmo approved through their insurance. Tami filed a complaint with the state insurance commission, who then got involved in their case. They made calls, Dr. Fesen made calls, friends made calls. They were doing a full-court press. “At this point the insurance company was denying the Retevmo. So there I was, not knowing what kind of medicine I was going to get, insurance company was saying we're not going to pay for it, and I was waiting to get into MD Anderson. We were literally in a hold pattern,” said Bill.
Bill and Tami’s insurance agent they have had for 30 plus years explained it this way to them; in order for the medicine to get on the formulary, it’s got to be reviewed by the company and then a commission at the management group before it’s brought in. That commission meets every six months, which is why they said they didn’t have to review the case.
However, Lilly Pharmaceutical came through first. Bill was able to obtain Retevmo through them. “They had a patient care portal person that reached out to us. They have 24-hour pharmacists that we can call if we had questions, they were amazing,” said Tami. Dr. Fesen added, “they were very cooperative and helpful in getting access to the drug so Bill could start treatment.”
Bill had to wait to see a specialist at MD Anderson until June 29, due to taking his fourth COVID-19 test. Every time he went to see a new physician, he took a COVID test. So, on top of fighting Stage 4 non-small cell lung cancer with a RET mutation, Bill was trying to avoid contracting coronavirus. That meant, after going to work almost every day of his life, he stayed home, away from the retail public, limiting contact with friends and family. Some cancer patients might be at increased risk of serious illness from an infection, such as coronavirus, because their immune systems are weakened by cancer and its treatments.
The MD Anderson specialist confirmed Bill’s diagnosis and encouraged him to start taking Retevmo immediately. Bill and Tami had driven to Houston for this visit, to try to eliminate their exposure due to COVID-19. Tami said, “We went to the really bad gas stations that nobody was at, just to avoid people. We had rubber gloves, we sprayed ourselves with Lysol, had masks.” Bill added, “I looked like a hazmat guy when I'd go to the restroom. That's how scared I was and I guess rightfully so, because at this point in time, my lungs were so compromised that it would have not turned out well at all.”
Bill had taken two Retevmo pills twice a day for about three and a half weeks when he developed what appeared to be nodules on the back of his neck. Dr. Fesen ordered a CT scan of his chest and neck, out of caution.
Bill had the CT scan in the morning, and a weekly appointment with Dr. Fesen that afternoon. Bill mentally prepared himself for bad news regarding the new nodules. At the time of Bill’s weekly appointment, the results from the CT scan weren’t in, but while Bill and Tami were meeting with Dr. Fesen the results arrived. Dr. Fesen glanced at the results, said the nodules on his neck and head were not cancer, then kept on reading aloud with the most shocking, but amazing news ever. Bill’s scan showed that the thyroid nodule and the one in the lymph node next to the thyroid were no longer there. The two masses in his lung were almost gone and the hundreds of nodules in both lungs were disappearing. “I’ve cried twice during this whole thing. The first time was when Blue Cross Blue Shield called and said they were going to cover Retevmo, and the second time was when we got this news,” said Tami.
You might wonder how is this possible and why did it happen so soon? It was the right oral medication to fight this type of cancer. Plus, you have the strength of a patient and his family and friends to put up a fight. “I simply tell the ones that ask, you know when you have as many friends praying for you as I do, you never underestimate the power of prayer, and that was and still is my answer for this success,” said Bill.
As far as side effects, there hasn’t been much, maybe some fatigue and few a sores in his mouth, but overall, his appetite is good and he’s getting out more. “He’s doing great! Bill will continue his treatment of Retevmo indefinitely, as long as it doesn’t bother him, as long as it’s useful, he’ll stay on it,” said Dr. Fesen.
And if any issues arise? “I can call Dr. Fesen. I've got his cell number,” said Bill. “We were uncomfortable at first calling because we don't want to bother him with a stupid question. But he wants to know what's going on. And I was so impressed with that. Not many doctors are going to be there for their patients like that,” said Tami. Dr. Fesen said that by giving out his personal cell number, it’s his way of reassuring patients and their families that he’s there to help them.
So what’s next for Bill and Tami? “We both have worked together for 30 some years and now we're both kind of at home together so it's been a challenge. Work is different than home,” said Tami.
“She's still alive.”
“He still won't run the sweeper.”
“I have cancer, I can't do that,” Bill says chuckling.
“I feel like I've asked him for six weeks to run the sweeper and every time, he goes- I have cancer. I'm like, really? You're going to use that now?” After months of fighting various battles of unknowns, sometimes a laugh over who is going to sweep is needed.
Bill also stresses the importance of reaching out to others when you find out that they might be fighting an illness, or have been diagnosed with a form of cancer. “Everybody should make a point of saying hey, I'm thinking of you. Praying for you. It's so important. It gives you so much encouragement and motivation to get through the day. When fighting cancer, there is hope. Developments in drugs are coming fast and furious, and what used to be a death sentence, now has so many possibilities of being treated and possibly being cured, so you just simply cannot give up.”
Central Care Cancer Center is dedicated to keeping cancer care close to home. They have facilities throughout Kansas, mostly in rural settings, including Great Bend. Central Care Cancer Center offers comprehensive cancer care including chemotherapy, radiation therapy, financial counseling and other supportive services all under one roof.
“We try and advocate for all our patients, whatever their needs are,” said Dr. Fesen. “I encourage everyone to limit their occupational exposures, get all screening and preventive tests done once a year (pap, mammograms, colonoscopy, family doctor visit). And don't smoke, don't chew (tobacco), limit the alcohol, stay healthy, keep your weight good, keep exercising. All those things are very important for everybody.”
“You know, his job drove him crazy at times, but now that he’s not there daily, he’s really missing it,” said Tami. Bill added, “My job right now is to beat cancer.” Bill is on his way!