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“Country Boots Cancer” Show Raises $40,300 for Johns Hopkins Medicine

“Country Boots Cancer,” the Aug. 19 benefit concert featuring Jamey Johnson and hosted by the Nikki Mitchell Foundation, raised $40,300 for Johns Hopkins Medicine.

The show at Rams

Head Live! in Baltimore, MD also featured Chris Hennessee, who performed songs from his new album “Ramble.”

One hundred percent of the profits will be donated to the new Pancreatic Cancer Precision Medicine Program (PCMoE) at Johns Hopkins Hospital. This program will offer precision testing, imaging, biopsy, assessment and treatment plans to all patients with aims of improving care for patients currently diagnosed and to support research efforts to find a cure. Through th

e precision medicine program patients can have their tumors sequenced to detect potential mutations that could guide their therapy, eliminating a ‘one size fits all’ approach.

The event’s speakers included Nikki Mitchell Foundation President Rhonda Miles, four-year pancreatic cancer survivor Lisa Eidelberg and Johns Hopkins Medicine surgeon Dr. Matthew Weiss. Nikki Mitchell Foundation would like to give a special thanks to Lisa Eidelberg and Lindsey Manos of JHM, who spent countless hours fundraising, recruiting volunteers and donations and promoting the show and the cause.

The Nikki Mitchell Foundation is named in honor of Waylon Jennings’ beloved late manager of 22 years, Nikki Mitchell, who died of pancreatic cancer in 2013.

One of Mitchell’s last wishes was for her foundation to continue to support Johns Hopkins, where she received excellent care and felt wholly supported on her cancer journey.

 

 

 

 

 

 

For more images, click here.

Artist photos by Brandon Amos at Low Light Photography.

The Importance of Resection Margin Status in Pancreatic Surgery

The following study was recently published in the British Journal of Surgery and below is a summary of the article.

Validation of at least 1 mm as cutoff for resection margins for pancreatic adenocarcinoma of the body and tail.

Hank, T., Hinz, U., Tarantino, I., et al.

One of the major goals of surgical resection of a pancreatic tumor is to clear the body of all local disease. A resection margin is the outer edge of the tissue that was removed. The margins of the resected specimen are reviewed by the pathologists and should ideally be free of disease. Traditionally, R0 represents no cancer at the margins, while R1 represents microscopic disease at the margin, and R2 is representative of gross disease at the margins (seen by naked eye). In recent times, the topic of an R0 resection with disease located within 1mm of the margin has gained interest in the surgical community.

Using an institutional database, the authors identified 455 patients and classified resection status as either R0, R1 less than 1 mm, and R1 direct.

Median survival (time from surgery to death)

  • R0: 62.4 months
  • R1< 1mm from margin: 24.6 months
  • R1 direct: 17.2 months

Postoperative chemotherapy group median survival

  • R0: 68.6 months
  • R1< 1mm from margin: 32.8 months
  • R1 direct: 21.4 months

An important aspect of the study was that the authors not only analyzed the survival rates of all patients but also studied trends of survival in patients who received postoperative chemotherapy. Since postoperative chemotherapy is known to be related with survival, the authors wanted to demonstrate that margin status was independently associated with improved survival.

The results of the study confirm the importance of resection margin as they independently predicted survival in these patients regardless of their postoperative chemotherapy status. In particular, the survival benefit of clean resection margins beyond 1mm are highlighted. The differences observed in all reported median survivals were statistically significant.

Note: published data suggests that the same findings hold true for Whipple procedures. In short, R0 resections are associated with improved survival of all pancreatic adenocarcinomas, regardless of pancreatic surgery type.

You can read the entire article here.

Summary by: Michael J. Wright, Department of Surgery, Johns Hopkins School of Medicine

An Activist and Survivor Shares Her Story

Lisa Eidelberg has been integral in raising funds for Nikki Mitchell Foundation’s “Country Boots Cancer” show, which is donating 100% of the proceeds to the future Pancreatic Cancer Precision Medicine Program at Johns Hopkins Medicine.

The pancreatic cancer activist and survivor shares her story: 

Lisa and her sons

“Peace Out Johns Hopkins”

Rhonda Miles, Jamey Johnson, Lisa Eidelberg

 

 

 

 

 

 

 

 

I am a very lucky four-year pancreatic cancer survivor!!

This journey began on Saturday June 7, 2014 when I woke up, looked in the mirror and thought, “Mmm, I look a little yellow!”  A friend had stopped by, looked at me and confirmed what I didn’t want to believe; I was indeed yellow!  My husband Marc and I went to the emergency room of a local hospital where I was told I would simply need my gall bladder out, even as I was becoming increasingly yellow! Fortunately, the doctors in my family had me moved to another hospital where I would have an ERCP the next day.  Coming out of anesthesia, Marc had the most difficult task of delivering the bad news……I had pancreatic cancer.  We were all shocked!  I was 54 at the time, healthy, had no family history of it, was active and had two 19-year-old sons who still needed me!  In the four months prior to diagnosis, I had an endoscopy, colonoscopy, two ultrasounds and blood work (just six weeks before diagnosis) which were all normal!

Luckily for me, I got an appointment with Dr. Wolfgang and team at Johns Hopkins Hospital, which I was told was the premiere pancreatic cancer team. Boy is that true!  On Saturday June 14, 2014, I had a successful Whipple surgery.  Recovery was so much more pleasant because of the caring staff at JHH!  Aftercare with this surgery is almost as important as the surgery itself!   Following recovery, I had 10 rounds of Folfirinox and radiation at Overlook Hospital in Summit, NJ where again, I was fortunate to receive compassionate, quality care.

At a post-surgical visit with Dr. Wolfgang and Lindsey Manos, they urged me to reach out to the Nikki Mitchell Foundation founder Rhonda Miles.  Somehow, they got a vibe that I resembled Nikki in spirit and attitude, although we were completely different people in the way we lived our lives.  My attitude was always positive, but I made it my business NOT to read the sad stories of this dreaded disease, so why would I reach out to Rhonda? Nikki had sadly and bravely lost her battle with this demon.  However, I’m so glad I did!  It’s enlightened me to the fact that this disease does not discriminate.  There is no “stereotypical” person who is affected by this many time fatal disease.  It’s brought about a renewed outlook on life and others.  Just as pancreatic cancer doesn’t judge, I don’t either.

It is my privilege to work with both the Nikki Mitchell Foundation and Johns Hopkins Hospital to raise funds for the new Pancreatic Cancer Precision Medicine program which will enhance the patient’s experience.  This will be THE place, for competent, caring, compassionate and cohesive treatment for those afflicted by this ugly disease!

I personally look forward to celebrating many more survival anniversaries but look forward to having a lot more company in the future!!

Donations for this event can be made HERE and select the campaign “Country Boots Cancer.”

How Do We Make a Difference?

We love the fact Nikki Mitchell Foundation has opportunities to plan amazing concerts with big-time talent! You might think we spend all our time producing concerts and an annual golf tournament, right? As our events bring in funds and our revenue grows, so do our expenses. More money coming in means more going out, so more funds mean we are able to increase patient assistance and fund promising research.

On the flip side, sometimes days can be rough in the office.

This week, we took a pancreatic cancer patient client off of our active financial aid roster and moved them to our “closed file.” You can guess what that means…she wasn’t cured, and she fought her disease until she couldn’t fight anymore. This woman was someone we connected with on a personal level, Rhonda spoke with her on the phone and listened to her stories, fears, needs and hopes. She figured out her financial needs and sent her gas and grocery cards, paid co-pays and financed a second opinion at UCLA through our Bridge of Wings program. Rhonda became her cheerleader and supporter.

We then called the first name on our waiting list. The family requested assistance with their mortgage payment. The patient was unable to talk, and his wife was at work, so their 17-year-old son took charge and was organized, thankful, and on top of their needs.

After the first phone call, the realization hit…this teenager should be hanging with his friends, playing sports or just acting like a 17-year-old. Instead, five minutes after hanging up, he emailed us their mortgage information, followed up with a phone call, thanked us and told us to have a blessed day. This kid is having to grow up too fast and take care of things most kids never even think about, like how can house payments be made or what would happen if they lose their home as his dad is suffering from pancreatic cancer.

We keep 40 clients on the active list and 40 times a month, we ask them: what do you need, what can we do to help? As we help our patients and plan our events, we constantly think – what do we do if we run out of funds? What if this event doesn’t bring in enough to support the Bridge of Wings program? The foundation doesn’t just help patients one time and then leave them to figure out finances as their disease worsens. We help these patients every month, as long as they are in need. Forty patients a month is all we are able to financially handle at this time and all we are able to manage with our small office.

How do we do it? How do we make a difference? We do it through YOU, and through our events sponsors, our faithful donors, event attendees and our online auctions. Our mission and goal is bigger than these events, bigger than the foundation, bigger than each individual. It’s about making a difference for this 17-year-old kid who sent his parent’s mortgage information. It’s about helping patients who are fighting this horrific disease. It’s about awareness and finding a cure.

Let’s make the difference in someone’s pancreatic cancer battle and let’s honor Nikki Mitchell while we do this.

Please consider donating today.

David’s Story

In August of 2017, at age 55, I was diagnosed with pancreatic cancer. Five years earlier my mom passed away from the disease so I knew what lay ahead of me.

When I met with my oncologist he said, “We’re talking cure, not life extension.” My surgeon at Johns Hopkins said, “We got this.” I knew the statistics but after hearing how optimistic my care team was…how could I not be?!

Over the next few months, as I went through the chemo, radiation and all the side effects, I remained absolutely optimistic and positive. I refused to allow negativity, anger or sorrow into my thought process….as these were counter-productive to my desired outcome. Along with a great care team, and just as essential, I had amazing support from my wife, kids and community (near and far), providing me with a lot of comfort.

March 16, 2018 I had my Whipple surgery. Everything went smoothly and as of now I’ve made a rapid recovery. I take great pride in saying that I am a survivor of pancreatic cancer….something too few people get to say.

What has become abundantly clear is that the past is past. The future is not here yet and all we have this moment. I am very much living in the moment and every day find something to appreciate or amaze me.

By, David Sokoloff

Palliative Care: Myths vs. Facts

I just returned from the Pancreas Club 2018 conference in Washington D.C., where I listened to 63 oral abstracts regarding ongoing research. It was a lot to sit through! The final presentation on the second and last day was titled “Utilization of palliative care services among patients with pancreatic cancer.”

I find it ironic that palliative care was recommended to Nikki very near the end of her life and the conference pushed this presentation to the very end as well. Nikki and I spoke many times about the need for palliative care early in a cancer diagnosis. Why not utilize all avenues to strengthen and improve your quality of life and build up a support system? I believe doctors and patients lack education on this extremely important and helpful type of care.

So, what is Palliative Care?  PALLIATIVE CARE IS “NOT” HOSPICE CARE.

Palliative care is specialized medical care for people with serious illness. This type of care is focused on providing relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a specially-trained team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness, and it can be provided along with curative treatment.

5 Myths and Facts of Palliative Care

  1. Myth: Palliative care hastens death. 
    Fact:
     Palliative care does not hasten death. It provides comfort and the best quality of life from diagnosis of an advanced illness until end of life.
  2. Myth:Palliative care is only for people dying of cancer.
    Fact: Palliative care can benefit patients and their families from the time of diagnosis of any illness that may shorten life.
  3. Myth: Palliative care is only provided in a hospital.
    Fact:Palliative care can be provided wherever the patient lives: home, long-term care facility, hospice or hospital. 
  4. Myth:Taking pain medications in palliative care leads to addiction. 
    Fact: 
    Keeping people comfortable often requires increased doses of pain medication. This is a result of tolerance to medication as the body adjusts, not addiction. 
  5. Myth:Palliative care means my doctor has given up and there is no hope for me.
    Fact: Palliative care ensures the best quality of life for those who have been diagnosed with an advanced illness.

The last myth is a big pet peeve of mine. I have heard people comment, “If your doctor mentions palliative care, then get a new doctor.” They think this means the doctor has given up on them, but this is flat out incorrect. If a doctor recommends palliative care, then you have a progressive doctor seeking to treat the whole person and ultimately, their loved ones. That is the kind of forward-thinking doctor I’d want for myself.

This type of care treats pain, depression, shortness of breath, fatigue, constipation, nausea, loss of appetite, difficulty sleeping, anxiety and any other symptoms that may be causing distress. The doctor will help you gain the strength to carry on with daily life and improve your quality of life.

Nikki’s first visit with her palliative care doctor was amazing! He sat and listened to her for a very long time, asked many questions and listened to her answers. He then formulated a plan specifically for her and gave her the tools she needed to move forward. When she felt better, physically and mentally, she wasn’t a cancer patient, she was just Nikki…

For more information on palliative care, click HERE (scroll to the end) and HERE.

Post by Rhonda Miles

Exosomes may be a key in diagnosing and treating pancreatic cancer

Exosomes, once thought to be only cell waste, play an important role in cell-to-cell communication, and could help treat pancreatic cancer patients or detect pancreatic cancer at an earlier stage.

Read more about these virus-sized molecules here: Q&A: What are exosomes, exactly?

Modifying exosomes to treat tumors

Valerie LeBleu, assistant professor of cancer biology at the University of Texas MD Anderson Cancer Center is leading a team that is working on modifying exosomes to target genes associated with pancreatic cancer, delivering molecules that can destroy tumors. Using the technique in mice, they were able to stop tumor growth and therefore extend life.

Read the full article here: What Was Once Considered Cell Waste Could Now Treat Pancreatic Cancer

Additional articles: Exosomes facilitate therapeutic targeting of oncogenic KRAS in pancreatic cancerInnovative therapy strategy for pancreatic cancer uses engineered exosomes targeting mutated KRAS gene

Early detection of pancreatic cancer

In addition to treatment, exosomes could detect pancreatic cancer before it becomes untreatable.   Read the article here: Exosomes as a platform for ‘liquid biopsy’ in pancreatic cancer

Jamey Johnson’s 6th Annual Golf Tournament and Benefit Concert Raises $270,000

Montgomery native Jamey Johnson’s sixth annual Homecoming Golf Tournament and Concert, held at the Cottonwood Golf Club, raised more than $200,000 to help those battling pancreatic cancer through the Nikki Mitchell Foundation.

The event also accepted donated toys for the Montgomery area Marine Toys for Tots.

The event’s grand finale was an outdoor concert that featured Johnson as well as Donica Knight, Rob Hatch, Gina Gailey, Tony Joe White, Keith Gattis and Chris Hennessee.

“The golf tournament and concert raise money for the Nikki Mitchell Foundation for all of the wonderful things they are doing to help those fighting pancreatic cancer, such as providing gas cards, groceries, bill paying or whatever,” says Johnson, who was a close friend of Nikki Mitchell and serves as the non-profit organization’s founding artist. “They offer all of these custom services to help people with pancreatic cancer.”

“The idea down the road is to raise enough money to fund research. Right now, we are taking care of the things we can take care of. The golf tournament every year funds a lot of that activity, as do the various concerts we do throughout the year.”

Rhonda Miles, president of the Nikki Mitchell Foundation, says, “We are completely humbled by the support and generosity shown to NMF this past weekend. We want to thank everyone involved.  We definitely know Nikki sent her magic to this event. The funds raised will guarantee our Bridge of Wings program will continue to relieve some financial burdens of our Pancreatic Cancer patients.”

Gilbert Carrillo, Adam Carrillo, Tony Medellin and Tim Henderson from Nitro Oil were on the golf tournament’s winning team.

For more information about NMF or Jamey Johnson’s Homecoming Golf Tournament:

Contact: Ariane Watkins

Phone: 615.982.6802

Email: ariane@nikkimitchellfoundation.org

Website: www.facebook.com/JameyJohnsonGolf

Photo by Lisa Harris

“Outlaw Country Jam” Raises Funds for NMF

Friends of Nikki Mitchell Foundation hosted the “Outlaw Country Jam” at the Pendleton County Fairgrounds in Falmouth, Kentucky on August 19th. Those performing included Chris Hennessee with some members from the Jamey Johnson band, Brothersmith and young local talent Ashley Cooper. The day had beautiful weather at the outdoor event and a large crowd attended. The show was sponsored by Melinda’s Wholesale Primitives, Cooper Funeral Home, R & R Roofing, Utz Plumbing, Dales Hauling, The Smoking Pig, Donald Wells Attorney, Johnson Heating & Cooling, Chucks Auto Body, Sunrise Corp., David Dunaway Auction, O’Hara Trucking and Precision Pressure.

 

For more information on hosting an event benefitting NMF, contact Ariane Watkins:
Phone: 615.982.6802
Email: ariane@nikkimitchellfoundation.org

 

What is Chemo Brain?

Photo credit: iStock.com

Photo credit: iStock.com

What Is Chemo Brain?

Chemotherapy can help you beat cancer, but side effects are almost certain. It’s common for you to have a cloudy mind, called “chemo brain,” during and after treatment. Maybe you have a hard time remembering names or can’t multitask as well as you used to.

As many as 3 out of 4 people with cancer say they’re not as mentally sharp. It’s often caused by chemotherapy medicines, but it can come from the cancer itself or other problems like infection, low blood counts, fatigue, sleep problems, or stress.

Symptoms

Chemo brain can cause thinking and memory problems. Symptoms include trouble with:

  • Concentrating and paying attention
  • Remembering names, dates, and everyday things
  • Finding the right word or doing simple math (like balancing your checkbook)
  • Doing more than one thing at a time
  • Mood swings

Diagnosis

If you’re in a mental fog, talk to your doctor. They will ask about your symptoms and will also want to know when your problems started and how they affect your everyday life.

Your doctor may ask what makes your symptoms worse and better. Do you, for example, feel better in the morning than at night? Does it help when you’re active, when you eat, or after you’ve rested?

Bring a list of all the medicines you take, even if they aren’t for cancer.

Treatment

If chemo brain is disrupting your daily life, your doctor may suggest a counselor or psychologist. There are other things that can help too, including:

  • Some stimulants and antidepressants
  • Exercise — even 5 minutes a day
  • Plenty of sleep and rest
  • Exercising your brain with puzzles, playing an instrument, or learning a new hobby

Memory Aids

Simple strategies can help with memory loss and confusion. Try these tips:

  • Carry a daily to-do list with reminders.
  • Don’t multitask. Do one thing at a time so you’re not distracted.
  • Put sticky notes around your home and office. Set reminders on your smartphone, too.

How Long Does It Last?

Often, the fogginess will fade when your chemo ends. But for some people, the fuzzy feelings will linger for several months or sometimes a year or more.

If you still have chemo brain a year after chemotherapy and you’ve tried all the self-help tips, talk with a neuropsychologist. This is a doctor who specializes in the brain and can help with attention span and memory. He will find areas where you need help and tell you if other treatable problems like depression, anxiety, and fatigue are to blame.

Remember, It’s Real

You’re not just imagining this. Studies show that cancer and its treatment causes changes in the brain. What you’re going through is normal.

Don’t be afraid to ask your family and friends for support and gentle reminders. Support groups are another great idea.

Article reposted from WebMD.com