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Previously Treated Multiple Myeloma

///Previously Treated Multiple Myeloma

Giving Back and Creating a Legacy

The Myeloma Institute is a trailblazer in the development of innovative treatments for myeloma and other plasma cell neoplasms. With a firm commitment to helping patients regain their lives and look forward to a disease-free future, the institute’s health care team provides expertise while extending compassion and encouragement.

Patients and families frequently ask how they can give back to the Myeloma Institute as a gesture of gratitude and as a way to support future patients.

For many, regardless of financial capacity, the answer is a planned gift. This giving mechanism can take many forms. For example, it can be stipulated in a will as a future gift, it can be set up as an annuity that provides current income, or it can be in the form of an endowment, such as an endowed chair in honor of a professor or program. A planned gift can sometimes provide relief from certain taxes.   

A planned gift is an excellent way to solidify philanthropic intent and provide resources for generations to come.

If you are interested in finding out more about planned giving, please contact Tom Stephenson, senior director of development for the Myeloma Institute at 501-526-6990, extension 8551, or TLStephenson@uams.edu. Information about planned giving can also be found on the UAMS website at www.giftplanning.uams.edu.

In thinking of legacy, we hope you consider the Myeloma Institute as a worthy recipient of your generosity.

Exceeding Expectations

Ambassador Ruth A. Davis traveled the world as a diplomat during her 40 years with the U.S. Foreign Service.

But when she learned she had a relapse of multiple myeloma, she headed to Arkansas and the UAMS Myeloma Institute.

“I’ve often had people ask me, ‘Why don’t you go somewhere in the area, closer to home.’ I tell them, ‘Listen. This is a question of my life and I will go where the best treatment is available,’” she said during a recent visit to UAMS.

Davis, who lives in Washington, D.C., has been receiving treatment at the Myeloma Institute for a decade. She was first diagnosed with multiple myeloma in 2000 and was told she could expect to live three years.

When she relapsed, she decide to come to the Myeloma Institute at the recommendation of a friend.          

Eugenia Davis-Clements, Frits van Rhee, M.D., Ph.D., and Ruth Davis

Eugenia Davis-Clements, Frits van Rhee, M.D., Ph.D., and Ruth Davis

“My experience with UAMS has been wonderful,” Davis said. “It has exceeded my expectations. The staff is accommodating. There is a community that has been developed to assist the patients of UAMS. They’re welcoming and competent. It gives me the confidence I need to proceed with fighting this disease.”

A trailblazer throughout her 40 years with the Foreign Service, Davis says she enjoyed every minute of it. She was the first African-American director of the U.S. Foreign Service Institute, and the first African-American woman to be director general of the Foreign Service. In 2016 she became the first African-American to receive the American Foreign Service Association’s Lifetime Contribution to American Diplomacy Award.

Beyond her world travels, Davis is proud to be an official Arkansas Traveler — a designation bestowed upon her by the governor. She is usually accompanied on her trips to Little Rock by her sister Eugenia Davis-Clements. The two women love meeting new people at UAMS and in the community and are known by many for their smiles and upbeat attitudes.

While Davis says having multiple myeloma and going through treatments has slowed her down a bit, she does not let it stop her. In November 2016 she traveled to Europe twice: to Brussels to chair the conference of the International Women’s Entrepreneurial Challenge and then to Vienna for the 50th anniversary of the United Nations Development Organization.

Davis is under the care of Frits van Rhee, M.D., Ph.D., professor in the UAMS College of Medicine and director of developmental and translational medicine at the UAMS Myeloma Institute.

“I feel that I get the individual attention that I need. I’m not just a case study. I’m a patient with a real need and he is responsive to that. He’s one of the best in the business so I’m delighted to be a patient of Dr. van Rhee. And I am truly grateful to be patient at the Myeloma Institute.”

Finding the Way

How do new patients find their way to the Myeloma Institute? Often through a family physician or local oncologist or through a lot of online research. Sometimes the path is a bit circuitous. That was the case for Linda King from Lee’s Summit, Missouri.

In 2006 Linda received the devastating news of her diagnosis, thanks to her family physician’s insistence that they figure out the cause of Linda’s anemia that surfaced during a routine physical exam.  He referred her to a cancer center for more diagnostic testing.  With confirmation from results of a bone marrow biopsy and the pronouncement of an average life expectancy of three years from a Kansas City oncologist, Linda and her husband, Steve, was back in her family doctor’s office asking for a second opinion. At his suggestion, they made an appointment at MD Anderson Cancer Center in Houston.

Then, some unexpected networking kicked in.  A lifetime friend of Steve’s, who lives 1,300 miles away, shared Linda’s diagnosis with a golfing partner, who happens to be an oncologist. The oncologist encouraged Steve’s friend to tell Linda that she should go to the Myeloma Institute at UAMS “because it is the best place in the world to receive treatment for multiple myeloma.”

Still pondering their options, Linda and Steve met with the oncologist who had treated Steve’s father for lymphoma. That oncologist recommended canceling the MD Anderson appointment and going directly to Little Rock because the Myeloma Institute focused almost exclusively on myeloma and was, in his opinion, the best at fighting it.

Two separate oncologists — from different parts of the country — made the same recommendation. That was enough for Linda and Steve to finalize a decision about where to go for treatment.

When Linda first came to the Myeloma Institute she was gripped by fear ­— fear that cancer could not be controlled and that the treatment would be grueling.

“Our world was full of unknowns, and frankly we were scared to death to leave our home and go to Little Rock to learn more about what to expect from this cancer,” Steve said.

Linda was enrolled in the Total Therapy III protocol that included two back-to-back stem cell transplants — one in August 2006 and the second in October 2006 — as well as chemotherapy during the induction and consolidation phases of treatments. She has been in complete remission ever since.

The most challenging aspects of treatment for Linda were the fatigue and separation from family, friends, and home. Her antidote to the challenges and the fear was a positive attitude fueled by her own inner strength, a dream to see her great-grandchildren enter the world one day, and reassurance from her Myeloma Institute physician that she had an excellent chance of a normal life expectancy.

The rewards for Linda are many, as she is able to live life the way she wants without any limitations from the myeloma or the treatments. The ultimate reward, in addition to sustained complete remission, is that she got to welcome great-grandchildren into the family. Linda spends a lot of time with them and is an integral part of their lives.

“If we had to do it again, we would definitely opt to come to the Myeloma Institute in a heartbeat,” she said.

Many patients who travel to the Myeloma Institute discover that Little Rock is filled with warm hospitality and an abundance of interesting sites, such as the River Market, the  William J. Clinton Presidential Center
and the Old State House.

“We found various  special things in and around Little Rock that actually made our trips enjoyable,” Linda said. “Steve is an avid bicycle rider and the Arkansas River Trail is one of the best off-road biking/walking trails he has ever experienced. He takes his bike on every trip to Little Rock.”

Linda and Steve are grateful to the Myeloma Institute for enabling Linda to live life in a totally productive and enjoyable way.  That gratitude has led them to make annual donations in support of the institute’s research.

“We anticipate that you compete with other, more common cancers, for research dollars. We hope that, in some small way, we are helping you to help others, just like you did for us,” they said. “We would advise anyone who has been diagnosed with myeloma to make sure that the Myeloma Institute is on the list of choices to consider. And then move it to the top of that list.”

No Chain No Gain

Hello there.  My adventures in training continue as we prepare for the September Big Dam Bridge 100.  This week’s episode is a bit short, as I had a minor setback.  But I must start off by saying that incidents on the open road are sadly unavoidable.  If you spend any time on two wheels you will inevitably crash.

So, it happened like this.  Neils and I were cycling between the Big Dam Bridge and the Two Rivers Park area, when I encountered a chain jam that left me completely vulnerable to the laws of physics.  Off I went, tumbling into the undergrowth like some sort of weed whacker with my legs propelling wildly in the air.  I bounced up and down a couple of times and finally came to a complete halt.

I laid there for a second.  My tongue did a quick sweep.  Okay, good—all teeth are intact.  Then I started to move my extremities.   Nothing was obviously broken. Check.  I repositioned myself a bit more, and everything seemed to be in working order. Thank you mother. Then I silently applauded myself for being the model of bicycle safety– I always wear protection.  Like they say, riding your bike without a helmet is a beacon of hope for those in need of new organs.

Neils laughed. A lot. Then I laughed. It was quite funny.

I gathered myself together at this point, feeling rather lucky that I was left unscathed by this unfortunate event.  It was then that I could clearly see that my Ye Old Bike needed a bit of medical attention.  He laid there, wounded, like some sort of stricken roadkill.   Acting decisively, I whipped out my dodgy finger and began to resuscitate, prying the jammed chain until it was loose. It was a success…or at least a temporary fix until I could take him in to see a specialist.

Then I decided that when situations like this occur, it is always a good idea to offer oneself a reward.  I’m sure this comes as a shock to you, but for me this always equates to ice cream.  So off we went, cycling down to my favorite spot for a nice refreshing pick-me-up.   However, there was one small issue.  It was Sunday morning at 10:30 am, which meant that we would have to wait 2 very long hours until the shop opened.  So, after putting my problem-solving skills to good use, we headed off to the shiny golden arches of hope, the ever-open land of the Fast and McFlurryous. I got my fix, with some nice hot caramel sauce that made it quite delightful.

That’s it for now.  More training updates next week, when my bike is working order. I will need to work my mcbutt off this week to catch up.

Cheers!

I'm lovin it

Multiple Myeloma Research Foundation (MMRF) Announces $4 Million Investment from the Perelman Family Foundation to Launch MMRF Prevention Project

Climb and Punishment–Uphill, Roadkill, and More.

The elevation is one of the harder aspects of taking on a long bike ride. Although you may think the state of Arkansas is flat because of the Mississippi Delta region that makes up the southeast portion of it, I’m here to tell you that is certainly not the case.   The Big Dam Bridge 100 cycling course has a total ascent of 4840 feet, with the worst headache coming right around mile 65, where there is this massive hill with an elevation that peaks at about 815 feet.

So, I know what you are ‘supposed’ to do when it comes to training to improve your climbing ability.  It’s all about the power-to-weight ratio.  In other words, to be in top climbing shape, you need to weigh roughly twice in pounds what your height is in inches.  So if you are, let’s say, 5’10 (70 inches) you should weigh in at a whopping 140lbs. Seeing as how I’m not going to be one of those Tour de France guys breezing through the mountains of the Pyrenees, singing “Ain’t No Mountain High Enough,” I’ll skip the lettuce-only diet and stick to what works—ice cream.

Another thing to do is to try and stay seated most of the way up.  It uses less energy than coming off of the saddle, and with 30 plus miles remaining, that is important.  Of course by mile 65, staying seated is difficult when that part of your body you desperately try to ignore occupies your entire existence… When you can no longer appreciate the sweet smell of sweat and burnt rubber on the beautiful path of victory because all you can think about is that bloody pain in your rear.

While staying hydrated is really important– especially during the Arkansas heat– taking in too many liquids will cause you to make multiple stops to answer the call of nature.

Managing your caloric intake is also crucial for a 100-mile ride, so it is important to keep eating along the way.  It will definitely help you feel a lot better at the end of the race.

As I was riding at about the 30th mile, I started thinking about all the dangerous encounters one might face while cycling the trails in Arkansas.  From the snakes to the big trucks, the open road can be a hazardous place, especially if you aren’t in a car.  This is evident by the volume of carcasses spotted on the roads. I mostly see armadillos (like today), but there are also many other species out there.  There is roadkill everywhere!

Let’s not forget the mosquitoes… Oh, and the ever-present multitude of gnarly gnats that get in your eyes, up your nose, and in your mouth.  The gnat splats on my forehead are a real badge of honor.

Then, of course, there’s the fluctuation in weather, which I was lucky enough to encounter today.  It began with beautiful sunshine, and I didn’t have a care in the world. The next thing I know I was surrounded by mammoth dark clouds with grumblings of thunder in the distance. I thought to myself that this was not going to work out well.

And it didn’t. It was a complete disaster. I was prepared for the heat and dehydration, but what I got was thunder, lightning, and more water than I could imagine with the torrential downpour of rain. I guess you can never be too prepared.  If it looks sunny, you better pack a rain suit.

Water Break dead animal road with a storm rocks and river