Diagnosis: Multiple Myeloma
Date Diagnosed: April 2004
Diagnosis: Multiple Myeloma
Date Diagnosed: April 2004
Chuck Mueller proudly calls Sun Prairie, Wisconsin home. Nonetheless, he and his wife Sandy like to hit the road as often as they can.
“We have wheels,” Chuck says, referring to his Airstream Motorhome. “We want to be mobile.” But when Chuck was diagnosed with prostate cancer, travel plans were forced to take a back seat.
“Oh, you know how it is, I go for my annual physical every five years,” he jokes. But during one of his routine physicals, Chuck’s doctor noticed an elevated Prostate Specific Antigen or PSA, essentially a protein produced by the prostate. A biopsy confirmed a diagnosis of prostate cancer.
“I told them I wanted a booth review, like in football,” he says half-jokingly. But, 72-year-old Chuck admits, “When you get diagnosed with cancer, your life flashes before you. You realize that you are human.”
Chuck was given a long list of treatment options and said radiation coupled with hormone therapy called Lupron sounded like the best route for him. He was referred to Dr. Rakesh Patel*, a Radiation Oncologist at University of Wisconsin, Hospital and Clinics, in Madison. Dr. Patel began treatment with a shot of Lupron two months prior to beginning the course of TomoTherapy® radiation treatment.
“Chuck was a good candidate for treatment on the Hi·Art® system because the prostate is in a challenging location,” said Dr. Patel. “With TomoTherapy, we can deliver radiation helically, treating both the prostate and pelvic lymph nodes concurrently while minimizing radiation dose to the small bowel and rectum.”
Chuck received 28 fractions of radiation, which meant that he returned to UW Hospital and Clinics every Monday through Friday for about 6 weeks. Each treatment fraction lasted approximately 30 minutes, from entering the treatment room to leaving.
Dr. Patel says the daily CTrue™ image, essentially a CT scan taken just prior to each radiation treatment, was used to verify the location of the prostate and normal structures to be sure the treatment would be as accurate as possible each time.
“The daily CTrue image gives us a tremendous advantage because the prostate is often in a different location from day to day, so we can shift the entire plan to address the target. It’s because of the conformal nature of TomoTherapy that we can treat more precisely. The nature of the prostate treatment area is harder to treat on other machines because you do not have this assurance.”
In fact, it’s this daily assurance that Dr. Patel was treating exactly what he saw that caused Chuck’s treatment course to be shorter than if he had been treated on a different radiation delivery machine. “Because we are using TomoTherapy and are more confident in our targeting, it allows us to give a higher dose of radiation in a shorter period of time. Without this targeting capability, Chuck’s treatment would have taken about two more weeks.”
Chuck MuellerDr. Patel says that side effects are also minimized thanks to the conformal nature of TomoTherapy treatments. “In general, patients receiving any kind of radiation to the pelvis might experience nausea and diarrhea. With TomoTherapy, we’re able to limit the amount of radiation to the small intestine and bowel so we see fewer incidences of major side effects,” said Dr. Patel.
Chuck says that while he did experience some mild side effects including diarrhea and more frequent urination, he did not have any pain during treatment. “My wife said she didn’t notice that treatments slowed me down at all,” laughed Chuck.
Now about 8 months post-treatment, Chuck says that the mild side effects disappeared some time ago. With a clean bill of health (Chuck’s PSA at diagnosis was 17; currently it’s 0**), he’s grateful to Dr. Patel and to the treatments made possible by the Hi·Art system. “TomoTherapy is the only way to go,” he says matter-of-factly.
With a renewed sense of freedom, Chuck and Sandy Mueller have taken up traveling once again. For their next trip, they’ll drive the Airstream down to Florida, then embark on a truly off-roads adventure.
“We’re treating the whole family to a cruise. All three of our kids and their spouses, plus seven grandchildren,” Chuck says with a grin. “It will be quite a trip. We’re looking forward to it.”
*Dr. Rakesh Patel is Assistant Professor of Human Oncology with the University of Wisconsin Medical School Faculty. He carries out treatments at UW Hospital & Clinics in Madison, Wisconsin.
**Chuck’s follow-up regime includes check ups every three to six months and four shots of Lupron each year.
This article is posted with permission from writer Alice Ryan, the Cambridge News and the family of John Stewart.
The phrase “fit family” could have been coined for the Stewarts. Mum and dad are keen rowers; both their daughters are members of a triathlon club. And, as Saturday dawns, they won’t be slumbering under the duvet - they’ll be heading for the swimming pool, ready to rack up another 80 or 90 lengths.
“It’s not always easy getting out of bed at 7.30am on a Saturday,” admits 13-year-old Jessica, laughing. “But once you’re in the pool it’s fine. And we all know we’re doing it for a good reason.”
The Stewarts, who live in Girton, each pledged to swim the equivalent of the Channel to raise cash for ACT, Addenbrooke’s Charitable Trust - more than 5,600 lengths between them.
It is, explains dad John, a way of saying thank-you: diagnosed with prostate cancer less than a year ago, he is being treated at the Cambridge hospital. And he says he couldn’t have asked for better care.
“When I was diagnosed it was a huge reality check,” says John, 46. “My first thought was: ‘What about the girls? Will they grow up without a daddy?’ But the team at Addenbrooke’s have been amazing. I’ve just finished my radiotherapy and, to be honest, I quite miss seeing them every day.”
John, a businessman, first went to the doctor in January. “I found myself needing to wee more often,” he explains. “But it creeps up on you really slowly: you don’t notice that you’re getting up twice a night, then three times - you just starting thinking that’s normal.
“My wife Catherine and I both row in the Bumps and I can remember having to jump out of the boat more frequently than usual. But I prevaricated: it wasn’t until Christmas, when we stayed in a very old house, that I thought: ‘I really have to get this checked out’. I was having to creep down the creaky old staircase four times a night.”
John’s GP immediately referred him to Addenbrooke’s for tests, including a biopsy. The results showed he had an aggressive form of prostate cancer.
A disease of a male reproductive gland, it is the most common form of cancer among men in the UK. The condition kills about 10,000 Brits each year but, thanks to advances in treatment, about seven in 10 newly diagnosed prostate cancer patients now survive beyond five years; in the 1970s it was only three in 10.
“Telling the girls was the hardest thing,” says Catherine. “We waited until we knew the extent of the cancer; thankfully John didn’t have any secondaries. Both the girls have been brilliant. It made us think: ‘What if?’ . . .
Three days after John was diagnosed I was cycling back from the school run and a car reversed out, nearly hitting me. I was going quite fast; it could have been very nasty. That confirmed my view that you have to take each day as it comes - because you never know.”
Both John and Catherine credit staff and pupils at St John’s School with supporting their daughters, Jessica and her younger sister Esme, 9, in the wake of his cancer diagnosis. Running their own company, Histon-based IT security firm Signify, the couple also say business partner Dave Abraham has been “absolutely great”.
“We’ve been lucky to receive some amazing support,” adds John.
“From the beginning we agreed we wanted to do our bit: we want to raise awareness of this disease. If men do notice they need to wee more often than normal, they should go to the doctor and just have it checked.”
Prescribed a combination of medication and a course of cutting-edge radio treatment, known as TomoTherapy, John first had to have surgery to relieve problems with his urinary system.
“I’ve learned that it’s no laughing matter,” he adds. “It got to the point where I couldn’t go on a long car journey; if I had a pint of beer I knew I’d have to wee four times to get rid of it - and it would be painful all four times. It’s not something to joke about: it can be really embarrassing and, if you can’t control it, it can be humiliating too.”
Before beginning TomoTherapy, a high-tech form of treatment which uses a special scanner to target radiotherapy, John went on a family holiday to the Middle East. It was a much-needed break. But, on their return, John came down with a cold - which turned into something far more sinister.
“To start with I thought he had man flu,” explains Catherine. “But he ended up in Addenbrooke’s with pneumonia. That’s the only time he took time off work, except when he had the surgery. He’s kept going through it all. But that’s what you have to do, keep going.”
Esme adds: “It was horrible seeing daddy go off to hospital. I think that was one of the hardest things.”
Wanting to get fit for his two-month course of radiotherapy, to help combat the fatigue which can be a side-effect, John struck upon the idea of doing a sponsored “Channel crossing”.
Deciding to swim 22 miles (that’s 1,416 lengths) in between treatments, his wife and daughters all decided to join in; between them, they have just completed the equivalent of four Channel crossings - and raised about £2,000 for ACT.
“It has been great for us to do something as a family,” adds Catherine. “We’ve always quite liked a challenge! We were worried that, only being nine, Esme might not make it. But she was amazing: if she’d only done 40 or 50 lengths, she felt like she hadn’t had a proper swim.”
Completing the challenge in stages, the Stewarts got into a routine of swimming first thing on a Saturday morning. “I really think it helped me through the radiotherapy,” adds John. “If I hadn’t swum for maybe three days I found I was far more tired afterwards. That made it harder to get back in the pool but, once I had, I always felt better.”
John now has to wait until January for tests to show how successful the TomoTherapy has been.
“The money we raise will go towards expanding the TomoTherapy service,” explains John. “It allows the radiotherapy to be targeted, which keeps side-effects down - that’s what allowed me to carry on working the whole time.”
The Stewarts are now planning a marathon cycle ride. “Sometimes things like this make you closer as a family,” adds Catherine. “I definitely think that’s true in our case.”
You can still sponsor the Stewarts on http://www.justgiving.com/stewarts-of-girton-for-act.
It’s 85 miles from Montgomery to Birmingham, Alabama. Laurens Pierce III made the trip there and back, every weekday, for 5 ½ weeks of TomoSM treatments. He’ll be the first to tell you it was worth every mile, and every minute.
A name like Laurens Pierce III comes with history. One ancestor signed the Declaration of Independence. Others trace leadership in the Montgomery, Alabama community back to pre-Civil War years. In spring of 2006, Laurens was looking forward to continued, active presence in Montgomery’s business community and a long future enjoying family and friends. Then, a series of Prostate Specific Antigen (PSA) screening tests showed rising PSA levels. And, fearing prostate cancer, Laurens asked for a biopsy.
Laurens was shocked when he received the results. “They took 17 tissue samples and all 17 were malignant,” recalls Laurens. A Gleason score was calculated, giving a grade or level to the extent of the cancer found in the prostate.
“My Gleason score was 8. The doctor said 80% of prostate cancer patients have a Gleason score of 6 or less. I was in trouble!”
Laurens’s oncologist agreed. “Mr. Pierce presented with high-risk prostate cancer. It was fast-growing and aggressive,” says University of Alabama at Birmingham (UAB) Associate Professor of Radiation Oncology Dr. John B. Fiveash.
“This was serious,” Laurens says, “For the first 10 days I was in mortal shock. I couldn’t stop thinking, I have cancer.”
Laurens, who describes himself as “medically proactive,” wanted information. His son-in-law, a regional manager for the oncology division of an international company and a son in the medical equipment profession gathered information from colleagues and clients. Laurens knew his situation was high risk and wanted the best options for treatment.
“The name TomoTherapy and Dr. John Fiveash kept coming up,” Laurens says. Immediately, he made an appointment with Dr. Fiveash at the Kirklin Clinic in Birmingham, 85 miles up I-65 from Montgomery.
“Dr. Fiveash gave it to me straight,” Laurens says. “Radiation treatment was my only option…They’d do adjuvant [hormone] therapy to shrink the tumor. Then radiation….I was told to expect chemotherapy afterward because of the tumor size and the way the cancer had spread….I felt like a guy who’d been in a car wreck…but I knew I had to be positive.” Also, Laurens was determined to learn as much as possible about the disease so he could make informed, confident decisions about his own care.
“The clinic had a handbook for patients telling you what to expect from radiation,” he recalls, “They list all these horrible things to expect…exhaustion, feeling sick…even lifelong side effects like bladder problems and rectal bleeding.”
“Dr. Fiveash said, ‘Throw that book away. That was printed before we had the TomoTherapy machine.”
Because Laurens had advanced prostate cancer, Dr. Fiveash recommended treatment using the TomoTherapy® Hi·Art® treatment system at the Kirklin Clinic.
“There are so many advantages to TomoTherapy,” Dr. Fiveash says.
“First, [the machine allows us to do] daily image guidance. We know, at every session, the exact location of the tumor and surrounding healthy tissue. This allows us to deliver more radiation to the prostate because we’re able to treat more accurately with lower toxicity.”
As a result, Dr. Fiveash was able to complete Laurens’s radiation therapy regimen in just 5 ½ weeks. Radiation therapy with conventional technology can take 8 to 9 weeks. And, without daily CT scans, radiation is directed toward a tumor based on radio opaque markers and data from periodic scans. If a tumor has shrunk or changed location, radiation could be incorrectly directed to healthy tissue.
By pairing CT scanning with a unique, 360 degree “helical” delivery of radiation, the TomoTherapy Hi·Art treatment system is equipped to deliver radiation to multiple sites in a single session. Dr. Fiveash describes this capability as a great advantage for treatment of advanced prostate cancer.
“TomoTherapy allows us to treat the lymph nodes and prostate at the same time, but, with a different amount of radiation to each….Other systems require 8 to 9 weeks. First, 5 ½ weeks with same amount of radiation to both the prostate and lymph nodes. Then, another 3 weeks to the prostate alone.”
The result? According to Dr. Fiveash, the 5 ½ week regimen with the TomoTherapy treatment system is not only more convenient for the patient, but more radiation is delivered to cancerous tissue with fewer and less severe side effects for surrounding healthy tissue.
“I’ve treated about 100 patients with the TomoTherapy machine…about 250 a year total in the clinic,” says Dr. Fiveash. “We’ve just completed a study of the first 30 patients where treatment included both prostate and lymph nodes…Despite higher amounts of radiation per day, toxicity was actually lower.”
“Even though we used more radiation in a shorter time we saw less side effects, not more …because of the image guidance and accuracy of the TomoTherapy system,” Dr. Fiveash says. The study showed promising results, even for advanced, high-risk patients like Laurens Pierce.
“No patients showed severe – grade 3 or 4 – toxicity,” Dr. Fiveash explains. “Before Tomo, about 5 to 10 percent of patients had long term rectal bleeding.”
At age 65, Laurens Pierce knows many men treated with radiation therapy for prostate cancer. He was prepared for a grueling experience.
“My golfing buddy was treated with ‘old fashioned ordinary radiation’ at the same time. We’d compare notes every Sunday. He had diarrhea, lost his hair…and worse. I didn’t.”
“I felt like I was playing Monopoly and got Park Place, Boardwalk and Get Out of Jail Free!” Laurens says.
“During the whole time I was receiving Tomo treatments I never missed work. Never had a side effect. I drove 100 miles to the clinic every day and came back to work….I never even missed my Sunday golf!”
“It’s critically important to be able to accurately locate the prostate gland and tumor on a daily basis,” says Dr. Fiveash. “With TomoTherapy we can minimize the extent to which rectal and bladder tissues are affected – and the resulting side effects.”
Laurens completed the treatment plan. Hormone therapy reduced the tumor size. The 5 ½ weeks of radiation therapy with the TomoTherapy Hi·Art treatment system followed. Now, Dr. Fiveash has scheduled regular check-ups and ongoing adjuvant therapy.
“I was told to expect chemotherapy to clean up residual cancer cells because of the tumor size,” Laurens says. “I didn’t need it. For the past 19 check-ups, over the past 4 1/2 years, my PSA levels have been so low they’re undetectable. Less than 0.1! And, because the amount of radiation on the tissue around my prostate was so small, I don’t have those long-term side effects like so many men.”
Laurens is also enrolled in a 4-year UAB Hospital study of prostate cancer patients treated with Androgen therapy to reduce testosterone levels and suppress growth of cancer cells. His PSA levels will be monitored regularly.
“Now, I want to tell everybody about TomoTherapy,” Laurens says. “I about wore out my printer copying pages from their website to give to people.”
Today, Laurens Pierce rarely sees a week pass without talking with someone about prostate cancer and TomoTherapy. In fact, he estimates his informal support network has referred more than 65 men for treatment at Kirklin Clinic. “I’ve made it my purpose to get a closet subject with a lot of men out into the open. I’ve even told my urologist here in Montgomery.”
Laurens has now returned to the life he enjoyed before prostate cancer and TomoTherapy treatment. “It took a few months to stop dwelling on the cancer,” he says. “Now, I’ve put it behind me. I’m going to see my grandchildren graduate from college. And, in 10 years, I plan to still be out there playing golf!”