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Relapsed / Refractory Multiple Myeloma

///Relapsed / Refractory Multiple Myeloma

Conway Cyclist Joins UAMS Myeloma Institute Team to Honor Dad

Sept. 20, 2017 | Julie Ferguson, 51, of Conway, plans to straddle her Trek bike and join 60 others Sept. 23 to ride in the UAMS Myeloma Institute’s Ride for Research.

Held in conjunction with the Big Dam Bridge 100, the 60 patients, supporters, donors and employees are riding to raise awareness of the blood and bone disease and money to help fight it with research and treatment.

“I decided to get involved because the research and awareness of multiple myeloma is important,” said Ferguson whose 80-year-old father David L. Baker of Conway died of complications of the disease in 2010. The longtime pharmacist, who owned several drugstores in Conway and in Little Rock, was diagnosed in 2006.

His daughter credits the physicians at UAMS Myeloma Institute with extending his life.

“Without treatment, my dad would have died within months,” she said. “Although the treatment was a terrible battle with a lot of ups and downs, my dad had the best and newest treatments at UAMS, which led him into remission.”

During their time here, Baker and his wife Carolyn met other myeloma patients from all over the world who came to Little Rock for treatment.

“I see that UAMS is continuing to improve the facilities, doctors, staff and research,” Ferguson said. “I am hopeful the next treatment for myeloma is a cure.”

Lisa Jiles, Shelly Moon, Julie Ferguson of Conway

Lisa Jiles, Shelly Moon, Julie Ferguson of Conway

Ferguson, who began riding with Women Bike Arkansas earlier this year, says the sport has been challenging.

“It’s been tough,” said the homemaker who also manages rental properties. “I have been knocked down and felt defeated, but I get back up and try it again,” she explained. “I feel stronger every time I ride.”

She originally signed up to ride the 10-mile course but later raised the bar for herself, more than tripling the distance.

“I changed it to the 32-mile course because I am riding for the research and awareness of myeloma and my dad had a challenge and fought hard,” she said. “I am taking up the challenge, the fight, the ‘never give up’ attitude for him and the many others who fought or are currently fighting myeloma.”

To date, the most miles Ferguson has covered in one ride has been 20.

“This will definitely be a challenge,” she says. Joining her will be her husband, Mark, who’s riding the 50-mile course and three of her friends from Conway, Shelly Moon and Lisa Jiles and Ginger Johnson.

Ferguson’s family has a long, deeply rooted history with UAMS, including several of family members who are graduates.

In the late 1980s and early 1990s, her three brothers graduated from UAMS — a pharmacy degree for John and James Baker, owners of Sav On Drugs in Conway; and a medical degree for David, an ophthalmologist and owner of Baker Eye in Conway who’s named after their father.

Additionally, two scholarships at UAMS were established by her family.

My dad was passionate about pharmacy and was well respected among his peers throughout the state,” Ferguson said, adding that in 1995, her father and his two brothers J.C. and Robert, also pharmacists, established the J. C. Baker, Sr. and Family Scholarship in Pharmacy in memory of their father John Cleveland Baker, an early Arkansas pharmacist who opened Baker Drugstore in Marshall before World War I. It remains open today, now owned and operated by J.C.’s grandchildren.

More recently, Ferguson’s brother, David, established the David L. Baker, Sr. Scholarship in honor of their father a couple of years after his death.

“With the educational history we have with UAMS and the familiarity of the high standard of staff at the school and hospital, we were thrilled to know that UAMS was literally the best place in the world to treat my dad’s onset and long-term treatment of multiple myeloma,” Ferguson said.

When her dad was diagnosed in 2006, she had never heard of the rare blood and bone disease. And when her friends would ask about the cancer, they would confuse it with the skin cancer melanoma.

“There was not a cure. Instead, remission was the word that we could look forward to experiencing with great joy. That was the goal and the only one that comes with a challenge, a fight and time and time again the words… ‘Never give up!’”

She watched as her father fought the disease.

“I saw him in pain before being diagnosed, undergoing aggressive treatment and being knocked down to a wheelchair before rallying to enjoy his family and finally go into remission,” recalled Ferguson who was close to obtaining a second degree in interior design from UCA when she quit school to help her mother care for her father a few months before his death.

“We were so thankful that we didn’t have to go anywhere else for the very best treatment. From what I saw in the aggressive and scientific treatment of my dad, I’m sure and hopeful we are close to a cure,” she said.

Myeloma Institute Hosts Patient Power Event on Rare Blood Diseases

Sept. 18, 2017 | UAMS Myeloma Institute patients, caregivers and health professionals gathered Sept. 9 at UAMS for Patient Power, a free event offering information about myeloma and other blood-related diseases and the significance of genetic profiling, imaging and getting involved with developing research.

“Living Well with Myeloma” drew a crowd of nearly 100, with another 200 participating through live streaming via the UAMS Myeloma Institute’s website. This is the second year that Patient Power, a Seattle-based service founded by Andrew and Esther Schorr that brings information and resources to patients, has brought the event to UAMS.

Former UAMS Myeloma Institute physician Guido Tricot, M.D., Ph.D., emeritus professor of medicine with the University of Iowa Health Care, was a featured guest expert, joining Myeloma Institute Director Gareth Morgan, M.D., Ph.D.; and UAMS’ Faith Davies, M.D.; Frits van Rhee, M.D., Ph.D.; Brian Walker, Ph.D.; and Kristen Carter, A.P.R.N., for the presentation.

Tricot recently moved back to Arkansas after retiring from the Huntsman Cancer Institute at University of Iowa Health Care. While at UAMS from 2001 to 2007, Tricot and his colleagues pioneered the use of a treatment technique that increased the median survival rate for newly diagnosed patients from 2 ½ years to 10 or more.

Most treatments at the time involved one round of high-dose chemotherapy, which killed not only the patient’s cancerous cells but also healthy ones. To improve upon this, he introduced induction chemotherapy, which uses anti-myeloma drugs before high-dose chemotherapy and stem cell transplant to reduce the tumor burden.

“He is responsible for developing one of the most effective induction regimens for multiple myeloma that’s being used around the world,” Morgan said of Tricot. “The combination chemotherapy approach is really what he is known for; his work formed the basis for one the regimens we still use. It’s well tolerated, gets people into remission quickly and doesn’t damage the stem cells.”

Tricot left UAMS in 2007 to launch the Utah Blood and Marrow Transplant and Myeloma Program at the University of Utah’s Huntsman Cancer Institute as its director. In 2012, he joined the Holden Comprehensive Cancer Center at the University of Iowa Health Care in Iowa City, Iowa.

The Patient Power event included a meet-and-greet session during breakfast followed by a talk-show style formal panel discussion on myeloma treatments, research updates, and the importance of genetic testing and imaging.

Myeloma patient Alan Stephenson of Monroe, La., shared a powerful story of his myeloma diagnosis, treatment and recovery. The 50-year-old financial advisor who experienced the complete fracture of one of his vertebrae before being diagnosed, said that following treatment by Morgan at the Myeloma Institute in the spring of 2016 he is now in remission.

Stephenson said he has returned to his previously active lifestyle including most of his outdoor hobbies — hunting, fishing, archery and more — and plans to take back up scuba diving.

The gathering concluded with a 45-minute general question-and-answer session between the panelists and the attendees, both those in person and those watching online. The recorded presentation can be found at http://patientpower.info/event/myeloma.

 

Evolutionary biology of high-risk multiple myeloma

UAMS Myeloma Institute Welcomes Patient Power to Little Rock Campus for Free Educational Event on the Rare Blood Cancer

For the second year in a row, the Myeloma Institute at the University of Arkansas for Medical Sciences is proud to partner with Patient Power for a multiple myeloma town meeting the morning of  Saturday, Sept. 9 in Little Rock, Ark. All aspects of myeloma will be covered in an easy-to-follow “talk-show style” format during this free event “Living Well with Multiple Myeloma: Understanding Genetics and Developing Research.”

UAMS experts Gareth Morgan, M.D., Ph.D., director of the Myeloma Institute; Faith Davies, M.D., deputy director; Frits van Rhee, M.D., PhD., and guest expert Guido Tricot, M.D., Ph.D., formerly with the UAMS Myeloma Institute, will speak about the significance of genetic profiling, imaging and how to get involved with developing research.

Tricot, a hematologist originally from Belgium, was formerly with the UAMS Myeloma Institute. During that time, most transplant treatments involved one round of high-dose chemotherapy which killed not only the patient’s cancerous cells but also healthy ones. To improve upon this, he introduced induction chemotherapy.

“He is responsible for developing one of the most effective induction regimens for multiple myeloma that’s being used around the world,” Morgan said of Tricot. “The combination chemotherapy approach is really what he is known for; his work formed the basis for one the regimens we still use. It’s well tolerated, gets people into remission quickly and doesn’t damage the stem cells.”

While at UAMS, Tricot and his colleagues pioneered the use of a treatment technique which increased the median survival rate for newly diagnosed patients from 2 ½ years to 10 or more.

Tricot left UAMS in 2007 to launch the new Utah Blood and Marrow Transplant and Myeloma Program at the University of Utah’s Huntsman Cancer Institute as its director. In 2012, he joined the Holden Comprehensive Cancer Center at the University of Iowa Health Care in Iowa City, Ia. where he was most recently an emeritus professor of Internal medicine professor with hematology, oncology and blood and marrow transplantation. He is now retired and spends the most of his time in Little Rock.

During the event, hosted by patient advocate Jeff Folloder, attendees will also have the opportunity to meet and connect with others living with myeloma over complimentary breakfast and coffee.

Register at www.patientpower.info/Sept9 or call (888)739-3127 to attend this free event from 9 a.m. to 12:45 p.m., CT on Saturday, Sept. 9 at UAMS Myeloma Institute (501 Jack Stephens Drive, Little Rock, AR 72205). Parking and refreshments are complimentary. If unable to attend in-person, patients and care partners can still register (https://patientpower.info/event/myeloma-arkansas-2017) to watch online via live stream from their computer and get access to the replay.

Myeloma patients and their loved ones need to be informed of the latest treatment and research news and what it means for them, particularly genetic testing and imaging. One past town meeting attendee said, “I have such a better understanding of my myeloma since being here. I now feel confident and informed as I go back home and continue to my life.”

Patient Power® is a service of Seattle-based Patient Power, LLC led by founders Andrew and Esther Schorr, supported by team members around the world. The couple earlier founded Health Talk, offering support for people with chronic illnesses and cancer.

Andrew was diagnosed with leukemia in 1996 following a routine blood test. Visit https://www.patientpower.info/about for more info.

Don’t Fear the Gear

Well, my training has not been going as well as I had hoped.  I know. I know.  But, to tell you the truth, I am a little worried about the distance and what it will do to my body. I am old.

I cycled the 30-mile loop around Scott on the weekend, which is beautiful and very, very flat. The countryside reminds me a bit of Holland with the water and flat fields–the end of which can only be seen because of the trees.  There was plenty of water because of the recent rain, but my view of the land was curtailed by the height of the corn, which was no longer green but brown and dried out.

The issue for me was the temperature, which had gone up to 97 degrees.  I have no idea how hot it truly felt had the humidity been taken into account, but it was pretty freakin’ hot.  Early mornings have never really been my forte, so by the time I woke up, said hello to my family, downed my coffee, and finally surfaced to sufficiently get the bike onto the car, it was eleven o’clock. Yes, I know. With another thirty or so minute drive to Scott, it was around 11:30 before I even got on my bike.

So, I have been in the south  now for over three years, and arguably I am a pretty smart guy, so it’s crucial to ask the question– especially as I am well aware of the old adage “mad dogs and English men go out in the midday sun”–  Why does this keep happening to me?

It was a 30-mile loop, and the first 20 were absolutely beautiful.  It was warm, but the slight breeze made it bearable.  Then with each mile, it got hotter and hotter.

“Yeah, I’m really enjoying this 110-degree weather!” said no one ever. I was becoming dehydrated and more and more tired. There was a total lack of shade, and with a total lack of hair to protect my head from the blaring rays, my bald head was becoming burned.  I began to feel worse and worse.  Basically, it sucked.
Cartoon

So, there are a few valuable lessons to learn here.

Number one:  Get up early, get on the road early, finish riding before your head turns into a baked potato, and keep well- hydrated. The ride is 100 miles, so get used to it!

Lesson number two:  The clothes you wear are important.  Don’t try something new on the day of the race.  Definitely wear a kit you have worn before and are comfortable in.  For me, the most important items are of the spandex/Lycra variety.   These come in a range of subtypes and have become increasingly popular, driven largely by the interesting social phenomenon known as “MAMILs” (pronounced mammals).  For those of you not familiar, a MAMIL is a middle-aged man in Lycra, who has decided that cycling is the new golf.  It has become a standard on weekends at the Big Dam Bridge to see a series of portly aging men of all shapes and sizes looking resplendent in the tightest garments you can imagine.  These brightly colored species whiz everywhere on their shiny new carbon bicycles screaming “on your left” at the top of their voices without any respect for the pedestrians they pass. They probably aren’t aware that the regulars are mildly ridiculing them as hapless wannabes.

CartoonWhat they also don’t know is that their so-called dapper duds were designed by a woman with a wicked sense of humor.  Tight-fitting bibs on pendulous beer bellies should never be seen. We can only be grateful that most do have the decency to wear a top of some sort, which covers up most of the offensiveness.

Despite them being jocular, the bibs do serve a real purpose – ask anyone who has ridden a bike without the padding in the tail end. Wearing well-designed bib shorts can go long way in terms preventing a number of difficulties, including saddle sores and other woes.    Another choice might be to add a little glide to your ride to reduce the friction and prevent chafing.

The thing is, the proper-fitting attire and accompanying gear can really make a difference, especially during a long ride.  So, while faintly ridiculous, go ahead and channel your inner Lycra-clad road warrior self and be proud. Stand tall, suck your gut in, and own your MAMILhood.

Cheers!

Haematological cancer: Where are we now with the treatment of multiple myeloma?