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Relapsed / Refractory Multiple Myeloma

///Relapsed / Refractory 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.
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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?

Altmetric: 5More detail Article | OPEN Spatial genomic heterogeneity in multiple myeloma revealed by multi-region sequencing

Trails and Tribulations

Not all who wander are lost…I have seen this a lot lately, adorning the shirts and walls amongst varied communities—from artists to drifters to star-seeking entrepreneurs to anyone who just likes the idea of following an unbeaten path.

While there is nothing wrong with a good quote that inspires you to one day seek adventure as a fearless trailblazer wandering bold new paths in life that in 4 easy steps can help change the world, I have to say that training for a 100 mile bike race during one of the hottest days in July is just not one of those times.

A couple of weekends ago, Faith, Brian, Niels, and I headed out to log some training time as we prepare for the Big Dam Bridge 100 coming up in September. Even early in the day it was hot. Back in the UK they called it a heat wave just last month when the temps peaked at about 30° C, which 86° F. Here in Little Rock, that’s a cold snap. The weather in the south is nothing short of diverse: Hurricanes, tornadoes, floods, droughts, ice, snow, and of course, the heat, which was close to triple digits that day.

Anyway, so despite the extreme heat, we logged roughly 50 miles, which should have been less, but I will get to that in a moment. I’ve been using this Strava app, which tracks key stats like distance, pace, speed, and even compares how I am doing over time. It’s actually pretty cool. You can see our cycling route in orange on the map image taken from the app.

I’m sure you have already noticed the straight line there with no outlet. So, in the age where GPS navigation is literally at your fingertips, one might say it would be difficult to make a wrong turn while out on the cycling trails. I mean it is pretty rare, unless of course you stop at a bar along the way, which we didn’t (not this time anyway).

I’m not complaining, it’s our own fault that we failed to properly follow the intended route. Well, let me say it another way… it’s our own fault we improperly followed Niels down the road to nowhere.
After a few short minutes of riding along, having seen no cars and no passers-by, I became quite confident that this was indeed a bad decision.

$*&%! Niels.

That’s when I first noticed the old man at the edge of his property, rocking in a creepy rhythm in his ratty chair. I’m pretty sure he was armed. Maybe it was the rusty sign halfway tacked up to a tree that read: PRIVATE PROPERTY. IF YOU CAN READ THIS YOU ARE IN RANGE that lead me to that assumption. The Old Man (as commonly referred to over the last couple of weeks) stiffened when he saw us, the rocking chair tilting back on its feet. At this point I fully expected the next sound I heard to be that of him cocking his rifle.

I was a bit surprised when The Old Man nodded, took a sip of his coffee and half-smiled as we rode past him.

That’s probably whiskey.

Ignoring all signs we were not on the correct course, we continued on for a while longer… well, until we reached the end.

A dead end road. $*&%! Niels.

So we headed back, found our way onto the correct route, and finished the rest of the way home. I was exhausted and drenched in sweat.

Oh, by the way, Niels and Brian stopped and chatted with The Old Man, who actually didn’t have a gun and was quite personable. I’m pretty sure they are all getting together to have coffee next week.

Trails and Tribulations image

Subaru and Leukemia & Lymphoma Society Blanket Myeloma Institute with Love

Gareth Morgan, M.D., Ph.D., (third from left) poses with patients and staff at the Myeloma Institute who welcomed the donation of blankets.

Gareth Morgan, M.D., Ph.D., (third from left) poses with patients and staff at the Myeloma Institute who welcomed the donation of blankets.

Aug. 4, 2017 | Patients of the UAMS Myeloma Institute will soon be wrapped in additional care and comfort, thanks to the Subaru Loves to Care initiative launched last year by the vehicle manufacturer in partnership with the Leukemia & Lymphoma Society.

As part of the nationwide initiative, employees from the Subaru of Little Rock dealership and the Arkansas division of the Leukemia & Lymphoma Society arrived for a noon visit July 26 bearing boxes filled with nearly 100 blankets to share with patients receiving treatment in the Myeloma Institute’s fourth-floor infusion clinic.

“This is a really important gift for us and we thank you all very much,” Gareth Morgan, M.D., Ph.D., director of the Myeloma Institute, told those assembled for the presentation, including several patients and their families.

“With temperatures reaching nearly 100 degrees outside right now, I guess some may wonder why these patients are getting these blankets now,” Morgan said. “But if you’ve been in a hospital for any amount of time, you understand that it can get very cold in here,” he added with a chuckle.

Delivering the blankets to UAMS were Leigh Ann Brannon of the Leukemia & Lymphoma Society and Subaru of Little Rock’s Lucas Darius, Charles Clark and Cecil Turner, manager of marketing and sales. Turner said his own life had been touched by a loved one diagnosed with cancer.

More than 38,000 blankets will be delivered across the country to patients in their communities fighting cancer.

Some of the patients like Bennie Utley, of Cabot, have been battling the illness for years.

“I was diagnosed in 2005,” Utley said. “My urologist referred me here for another disease and my quality of life is really good. I am happy to have this place so close to us.”

Donald Robertson and his wife, Yolanda, began traveling from Baton Rouge, Louisiana, to Little Rock for his treatment after he was diagnosed three years ago.

“We wanted to come to the top place for stem-cell transplant,” said Yolanda.

This summer, visitors to 475 Subaru retailers nationwide were given the chance to share personalized messages of hope to patients in their local communities. Those participating also received a bracelet to help spread awareness of leukemia and lymphoma and the automaker’s goal to extend care and hope.

After distributing the blankets, the Leukemia & Lymphoma Society, which exists to find cures and ensure access to treatment for blood cancer patients, including those with myeloma, will feature online inspiring stories and photos of survivors and patients from across the nation.

The UAMS Myeloma Institute is the world’s foremost research and treatment center for multiple myeloma, a cancer of the blood’s plasma cells. Visit myeloma.uams.edu.  Find us on FacebookTwitter or YouTube.