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Patient Profile: Perseverance and Positive Thinking Helped This Young Mother

Cancer is a stealthy assailant. Symptoms can be nonexistent or masquerade as some other ailment. When a medical professional utters the “C” word, the shock can be intense.

“I had no idea,” said Lindsay Hutchings of the softball-sized tumor that had been growing in her chest behind her breastbone. “I just knew I didn’t feel right.”

Lindsay was 34 at the time of her diagnosis. A mother of two young children, she never suspected cancer when she started feeling unwell. It was October. Time for picking Halloween costumes and the season when colds spread like wildfire through schools.  A mom with young kids feeling fatigued and achy was nothing to be alarmed about.

Lindsay went to a walk-in clinic. When she didn’t improve, she went to her primary care doctor. She was given antibiotics. She was tested for the flu and then mono. Allergies were blamed and antihistamines suggested. Every week she was back in either the walk-in clinic or her primary care doctor’s office.  Until one morning she woke up with a swollen neck and jaw.  She knew this was not just a stubborn cold. She knew it wasn’t allergies.

“This time I was diagnosed with a sinus infection and referred to an Ear, Nose & Throat (ENT) physician. It was frustrating because I knew it wasn’t a sinus infection. I just didn’t have any idea what it could be.”

By this point, Lindsay’s husband, Jake, was going to appointments with her in hopes he might think of some question or detail she had missed. The ENT doctor examined Lindsay and listened to the path that had brought her and her husband to see him. He scoped Lindsay’s sinuses and found nothing.

Then he ordered a CAT scan and posed the possibility that Lindsay’s symptoms might not be related to a virus, allergy, or superbug. It might be cancer.

She was told to expect to wait three weeks for the results of her CAT scan because of the Christmas and New Year’s holidays, but the ENT called her after a few days with the results.  He suspected lymphoma and referred her to an oncologist.

Lindsay started the New Year off by having two biopsies and a PET scan to confirm what the ENT had suspected.  Four months after she first began feeling off, Lindsay had an answer. It was Stage IIB Hodgkin Lymphoma.

About Hodgkin Lymphoma

Cancers that start in white blood cells—also called lymphocytes–are categorized as lymphomas. The two main types of lymphomas are Non-Hodgkin Lymphoma and Hodgkin Lymphoma. Hodgkin Lymphoma (HL) can start in any lymphoid tissue in the body, such as the spleen, bone marrow, thymus, adenoids or tonsils. However, it most often starts in lymph nodes in the upper part of the body. Lymph nodes are bean-sized collections of lymphocytes and other immune system cells and are located throughout the body.

The causes and triggers for HL are unknown. Children and adults can develop Hodgkin Lymphoma. The average age at the time of diagnosis is 39. Although there is a higher rate of lymphomas in people with immune disorders, there is usually no known risk factor or cause for people diagnosed with HL.

There are four subtypes of classic HL and a rarer form of HL called nodular lymphocyte-predominant Hodgkin lymphoma (NLPHL). Treatment for the disease varies depending on what type the patient has, what stage the disease is in (I, II, III, or IV), and whether certain other symptoms are present (called B symptoms).

Cancer’s Emotional Side Effects: Shock, Optimism & Guilt

From the first mention of lymphoma by the ENT physician Lindsay began researching the disease online. She went to her first post-diagnosis oncology appointment armed with questions. Her oncologist patiently answered her questions and laid out a treatment plan he felt confident was the right one. He explained the survival rates were high and the rates of recurrence of HL were low. He assured Lindsay and Jake her prognosis was good.

“I was in shock. I had no idea what I was doing but he was responsive and reassuring. I would call or email my oncologist between appointments with questions and he always responded. It really helped me be positive and more confident,” Lindsay explained.

She needed that positive confidence to help with the first challenge that followed on the heels or her diagnosis. She and Jake had to sit down with their daughters—who were just four and seven—to explain their mommy had cancer and what that meant for their family.

Lindsay’s mother had passed away from lung cancer just two years prior.  It was hard for seven-year-old Delaney to understand that this cancer was different from her grandmother’s.  She became anxious after the effects of treatment began taking their toll that Lindsay might die just as her grandmother had.

Her younger daughter had a hard time distinguishing the kind of sick her mommy was from the everyday illnesses she and her friends might have.

And of course, once treatment began, there was a lot Lindsay couldn’t do for her children anymore. Some days she couldn’t get out of bed. Often Lindsay was unable to take them to school or help with homework. She stopped volunteering at their schools. A low point for their family came early in Lindsey’s treatment when Delaney came home from school sick Lindsay had to avoid being near her. Meanwhile, her husband worked from home as much as he could or took time off to care for Lindsay and their daughters.

Lindsay admits, “I still feel guilt for the burden I put on my family.”

The Cancer Journey Continues

Lindsay’s cancer was treated with chemotherapy and radiation. There were side effects, of course:  exhaustion, chemobrain, nausea, constipation, blood clots.  She had to get daily shots of blood thinners in the doctor’s office, which brought other risks and complications. There were moments of panic when it seemed the tumor had stopped responding and additional biopsies followed.  But in the end, nearly a year after Lindsay first began experiencing symptoms, she was declared cancer-free.

There is a sense of victory from beating cancer. But like many other cancer survivors, Lindsay can’t say her cancer journey has truly concluded.

“At this point I am cancer-free, but I’m paranoid. It [the tumor] got so big without me knowing! I feel like some part of me will always worry.”

Ten to 30 percent of HL patients experience recurrence of the disease, with recurrence being lowest for those who are treated in the early stages of the disease. However, rates of developing a second cancer are higher for HL survivors than the general public regardless of whether the lymphoma returns.

Lindsay will have quarterly follow-up visits and two scans this year to screen for recurrence. As long as her results remain normal, she can scale back to annual screenings the following year. However, because she’s now at higher risks for other medical issues, she needs annual screenings by a cardiologist and pulmonologist. She will have annual mammograms now, instead of waiting until age 40 or 45. She has a roster of doctors at a time of life when many of her peers are in peak health.

The upside, Lindsay says, is that if any of her friends or family ever need a recommendation for a specialist in town, she has her list ready!

In addition to the health concerns she will carry, Lindsay also continues to deal with fatigue. Fortunately, while undergoing treatment Lindsay was able to connect with, Brittany, a two-time survivor of Hodgkin Lymphoma.  Brittany used to teach at Delaney’s school and when she heard about Lindsay’s diagnosis, she tracked down her phone number from a friend because she knew from experience how helpful it is to hear perspective and encouragement from someone who has been there before.

“When I went to my appointments, I was usually the youngest person in the office by decades,” Lindsay explained. Talking to someone closer to her own age has helped.

In addition to finding a connection with a fellow survivor, Lindsay is also grateful for the support she and her family received from friends and family in their community. During her treatment, Jake and Lindsay’s family helped as they could.  But there was also an outpouring of support from friends and acquaintances who helped with meals, gift cards, and donating to a GoFundMe account for the family.

“If I could give one piece of advice,” Lindsay says, “it would be to build your community. If we didn’t have friends and family to help get us through, I don’t know what we would’ve done. You can’t be involved in your community or volunteer or even go to church when you are sick. But I am so grateful that we were involved and active before the diagnosis.”

At a time when she saw few people and did very little outside of her home, she felt buoyed by the care and concern of from relationships she’d established before her illness. So, along with the guilt and worry she may carry forward from her cancer journey, she will also carry an abiding appreciation for the value of a supportive community.

Life for the Hutchings family is gradually settling back into normalcy, with family vacations and school schedules supplanting doctors’ appointments and treatments. Lindsay can begin to enjoy her new mantle of ‘cancer survivor’ with increasing confidence. But rather than consign the experience to something that “happened” to her, she is sharing what’s she learned from the experience. She would not claim to be an expert in cancer and its treatment options. But she does advocate for the power of building relationships and positive thinking. These are lessons that can help others whether they are confronting cancer or any other life-altering ordeal.

Notable News September 2019

September wraps up a big month of cancer awareness. It is the awareness month for childhood cancer, gynecologic cancer, leukemia and lymphoma, ovarian cancer, prostate cancer, and thyroid cancer. Awareness days bring people together to provide educational and fundraising opportunities, and they can help shine a brighter light on the need for funding and research. If you ordered anything from Amazon recently, you may have noticed just how impactful awareness months can be. During the month of September Amazon partnered with the American Childhood Cancer Organization (ACCO) and helped raise awareness by using special packaging designed with the childhood cancer gold ribbon symbol. That kind of exposure can lead to increased funding and support from those who might not otherwise be aware that every three minutes a child is diagnosed with cancer, and it remains the deadliest disease for children in the United States. Learn more at acco.org.
Like leukemia and lymphoma, multiple myeloma is a blood cancer, and while its awareness month is in March, this month there is some promising news for treating the incurable cancer, says biospace.com. The FDA approved the drug Darzalex to be used in combination with other medications for patients newly diagnosed and eligible for autologous stem cell transplant. Studies showed that adding Darzalex to the other medications reduced disease progression or death by 53 percent. More information about the uses of Darzalex can be found here.
Something else to be aware of this month is the potential danger of a popular heartburn medication, reports webmd.com. Ranitidine, known as Zantac, and several generic versions, may pose a cancer risk. The FDA found a cancer causing substance in the drug, and now at least one manufacturer has recalled the drug, and another one has stopped distributing it. It is not yet known why lab testing discovered a carcinogen in the drug, but if you take Zantac, or one of the generic versions, you should probably talk to your doctor, and read more about the findings here.
Of course, it would be ideal if we didn’t have to be aware of cancer at all anymore, and that just may be the case in the future, thanks to a “magic” treatment, says medicalxpress.com. Researchers, using a super computer, have found a molecule that could fix any cancer-related issues in the body. The molecule is promising because, unlike other immunotherapies, it could be sold in pill form, could reach deeper into tissues, and would leave the body faster, reducing negative side effects. Also, it could be used to fight several kinds of cancers including melanoma, breast cancer, lung cancer, lymphoma, and brain cancer. The magic pill still has further development, but the research is moving from the lab to animal testing, so fingers crossed that before long this magic molecule leads to a cure. You can find out more here.
September also hosts Take a Loved One to the Doctor Day, so mark your calendar for next year, and make sure you don’t miss any other important awareness dates. They can be found on the Patient Empowerment Network (PEN) Cancer Awareness Calendar, here.

Overcoming Challenges and Choosing the Best Treatment

This podcast was originally published on City of Hope Radio here.


Cutaneous T cell lymphomas are types of non-Hodgkin lymphoma that arise when infection-fighting white blood cells in the lymphatic system – called lymphocytes – become malignant and affect the skin.

Lymphomas are cancers of the lymphoid system and usually arise in lymph nodes.

However, with skin being the largest lymphoid organ in the body and our first line of defense against the outside environment, occasionally it becomes the site of lymphoma formation.

Listen in as Jasmine Zain, MD talks about T cell lymphomas, along with the best prevention and treatments.

Day 8: Non Hodgkin Lymphoma

Editor’s NoteThis blog was originally written and posted for HealthUnlocked here.

This Christmas, we have partnered up with HealthUnlocked to participate in their 12 Days of Christmas campaign. This campaign features twelve different health and wellbeing conditions and their online communities.


Day 8: Non Hodgkin LymphomaHU day 8

Non-Hodgkin Lymphoma (also known as Non-Hodgkin’s Lymphoma, NHL, or sometimes just Lymphoma) is a cancer that starts in cells called lymphocytes (a type of white blood cell), which are part of the lymphatic system. This system – composed of lymph nodes in your neck, armpits, groin, chest, and abdomen – removes excess fluids from your body and produces immune cells. Abnormal lymphocytes become lymphoma cells, which multiply and collect in your lymph nodes. Over time, these cancerous cells impair your immune system.

NHL is one of the most common cancers in the United States, accounting for about 4% of all cancers. The average American’s risk of developing NHL during his or her lifetime is about 1 in 50 – that’s about 72,580 this year alone.

Key Facts on NHL

  • Lymphomas are divided into two categories: Hodgkin Lymphoma and Non-Hodgkin Lymphomas. About 88% if people with lymphoma have Non-Hodgkin Lymphoma
  • There are two main types: B-Cell Lymphoma or T-Cell Lymphoma – but there are about 60 subtypes
  • Overall survival at five years is more than 60%, according to the National Cancer Institute
  • NHL most often starts in the lymph nodes in the upper part of the body – in the neck or chest or under the arms
  • It can spread through the lymph system to other lymph nodes and outside the lymph nodes to the bone marrow, lungs, or liver
  • There is no known cause of NHL, but there are several factors that may increase risk, such as a weakened immune system from an inherited disease, autoimmune disease, HIV, or drugs given because of an organ transplant, and certain viruses or chemicals
  • NHL occurs more often in patients between the ages of 40 and 70

 Symptoms of NHL

  • Swollen lymph nodes and/or abdomen
  • Chest pain or pressure
  • Shortness of breath or cough
  • Fever or night sweats
  • Weight loss or fatigue
  • Low red blood cell counts

 

Join an online Non-Hodgkin’s Lymphoma community within HealthUnlocked today. Get support, help, and information from people who also have the condition.

Interview with NHL Expert Dr. Steven Rosen

Interview with Steven Rosen, MD; Provost and Chief Scientific Officer, City of Hope

From the 14th annual International Workshop on Non-Hodgkin Lymphoma (iwNHL), Dr. Steven Rosen was interviewed about the different types, biological treatment options, and the patient’s role in Non-Hodgkin Lymphoma. Watch the full videos below to hear all of Dr. Rosen’s insight.

What Are The Types of NHL? from Patient Empowerment Network on Vimeo.

Biologic Treatment Options For Lymphoma from Patient Empowerment Network on Vimeo.

What Can Patients Do For Themselves During Treatment? from Patient Empowerment Network on Vimeo.

Importance of A Healthy Lifestyle and Diet With Cancer from Patient Empowerment Network on Vimeo.

iwNHL Conference Main Takeaways

Panel Interview with John Gribben, MD, Professor of Experimental Cancer Medicine Barts Cancer Institute, Simon Rule, MD, Professor in Hematology Plymouth University, and Owen O’Connor, MD, PhD, Professor of Medicine and Experimental Therapeutics Columbia University

From the 14th Annual International Workshop On Non-Hodgkin Lymphoma (iwNHL), Dr. Gribben leads the panel discussion alongside Dr. Rule and Dr. O’Connor about the different treatment options and the notion of “chemotherapy-free” treatments for Non-Hodgkin Lymphoma patients. Next, the panel moves on to the drugs available and some of the side effects associated with them. Watch the full video below to hear from three NHL experts.

NHL Cancer Expert Roundtable from Patient Empowerment Network on Vimeo.

An Upbeat and Energetic Cancer Conference? Really? You Bet!!!

   LLS Rocky Mountain Chapter conference

(Editor’s Note: The author of this post, Bill Slatkin, was one of the participants of Patient Empowerment Network’s Patient Cafe™ March session for CLL patients.)

About as upbeat and energized as any of the 50 or more conferences I’ve attended over the years.

That was my impression when I first got a sense of the vibe at the Fifth Annual Conference of the Rocky Mountain Chapter of the Leukemia/Lymphoma Society in Denver, April 11.

That feeling stayed with me, watching people chatting amicably, somehow sharing, with absolute strangers, details of their medical lives they probably don’t discuss with close friends and relatives. It was as if we are some kind of family brought together because of something important we all have in common.

Rocky Mountain Chapter of LLSWell, we do have something important in common, dammit. We’ve all been given terrible, frightening news–news that’s literally a matter of life and death. So what’s with the upbeat moods? People smiling, even laughing. A community of survivors and their loved ones, glad to mingle and meet, mostly talking about things that belong to the celebrating-the-being-alive side of life—long-term connections, expanding families, happy events–not the other side: the one about the awareness we are quite possibly being stalked by the Grim Reaper.

The mood was every bit as elevated in that hall as the pulse I’ve experienced at conferences attended by people with shared business, social or other interests. But here, in Denver, we were not getting excited about new technologies or innovative efforts to protect our environment, or the challenges represented by dramatic changes in the publishing industry. The topic was Cancer. And somehow the positive effect of this chance to come together was more powerful than the sum of our individual anxieties about our relationships with the disease.

While getting accustomed to that irony, I also noticed how frequently speakers and attendees Rocky Mountain Chapter LLS conferencewere using that word, “cancer,” and uttering it as casually as if they were talking about a “computer” at a database management conference.

Cancer. The word was being used without a trace of emotional content. (And the word “terminal” was used in a matter-of-fact way, sounding no more ominous than when it’s uttered with the word “computer” in front.)

Though used in a matter-of-fact way all day, it is, after all, the “C” word. It’s the word that–when we first heard it in reference to our selves, or a loved one–marked a significant, life-changing moment for most every person attending the conference. The moment each of us found out that cancer was touching us is a moment that each of us remembers in our own way, and that none of us ever will forget.

Rocky Mountain Chapter of LLSAsk someone the names and ages of her grand children, or the names and positions of the key players on his favorite sports team. You’ll get a fairly complete answer after some hesitancy and head scratching; after the individual has had time to mine the brain for the information. Now ask the same person about the moment he or she learned they or a loved one has cancer. It may have happened long ago, but the time and place the diagnosis was delivered aren’t facts buried deep in the archives of the memory along with everything else that happened back then. No. That information is right there, top of the mind, instantly available.

One compelling story we heard came from the keynote speaker, Ethan Zohn. Ethan’s claim to fame is winning a million bucks by outlasting other people in a televised competition called “Survivor—Africa.” I think the 400 or so attendees choked up along with Ethan when he described how he felt when learning the bone marrow transplant he’d received, after other treatments proved ineffective, had not done the trick. He said he’d experienced the medical procedure as more difficult than his days in Kenya when he was lost in an unfamiliar, frightening wilderness with little to eat and drink. The transplant was the most difficult experience of his life. In the end, it failed.

Ethan went on to talk about the following effort—a second transplant, this time with bone Rocky Mountain Chapter LLS conferencemarrow donated by his brother. He explained what he does to manage the worry that this attempt might also prove ineffective. This fear can be a constant companion. But for today, he is alive and reminding himself to celebrate his aliveness. And on those days of being alive when the clouds of doubt block the light of his hopeful optimism, Ethan thinks about that worry, and he commits the details to writing. All of the slips of paper he has filled with his anxious thoughts about “what will I do if…?” go into his “worry box.” Should the day come when what he’s worried about becomes his reality, he plans to open the box and read its contents. Only then, only if it happens, will he allow his mind to entertain the questions about what to do next. Meanwhile, there are his experiences of joy and satisfaction using his story and his compassion to bring comfort to people who are suffering. And to share the spirit of hope.

His tone changed when he pointed out he was glad he’d done well in a show called “Survivor,” rather than the one called the “Walking Dead.”

Who could ask for a better keynote speaker? He’s a charming television personality who has dedicated his newly-awarded money and his energy to help people find their strength and their courage as they face this most daunting of life’s challenges. Ethan said he attributed his motivation to this motto: “Never let a crisis go to waste.”

His warm, humorous, enthusiastic delivery further elevated our level of optimistic energy. It felt as if most of the people in attendance were carrying around with us– in addition to the written materials we were handed–that positive mood. And a hopeful attitude, in spite of some of the frightening survival statistics we heard about from various speakers in the large ballroom and the breakout sessions in Denver’s Crown Plaza (Airport) Hotel.

Here are some of the things I learned in those sessions.

  1. Similar genetic markers: Diseases as varied as lung, ovarian, blood and breast cancer, though they differ in the form they take and the places in the body where they appear, often have remarkable similarities on a molecular level. That’s exciting news in the way it meshes with the strategy of using targeted therapies. Until not too long ago, oncologist threw every drug that might prove beneficial at a case of, say, lung cancer. And then they, along with their patients, would hope for the best. All were happy and relieved if the cancer appeared to be defeated. But they also knew the disease has a nasty habit of reoccurring, and in a different form that is resistant to whatever treatment beat the disease in the first battle. There was little understanding of what might work, and when, why and how it might come back. The scientific explanation behind remission or relapse contained a few good ideas and a lot of uncertainty.The current approach to treatment is less like using a canon as the go-to weapon in every battle simply because it’s the only weapon you have. As they learn what they want to attack, and how to kill it, clinical researchers are creating formulations with clearly defined missions and specific enemies. As they devise cancer treatment protocols, oncologists use what they know about the makeup of particular cancer cells wherever those cells might be attacking the patient’s body. And they are combining drugs, using multiple weapons ready to destroy the cancer they find today, and ready to keep combatting the disease with different chemical tools as the cells morph into different forms, attempting to avoid destruction and to complete their deadly work. Figures tracking recoveries and longevity are showing positive results of this strategy in many forms of cancer.
  2. Communicating with your doctor: Some 86% of the doctors recently polled, reported good relationships with their patients, while only 20% of those patients agreed. The presenters, Jeffrey Matous, MD and nurse practitioner Megan Anderson, who work together at the Colorado Blood Cancer Institute, discussed how this problem might be solved. They advocate that patients become better prepared (bring a list of concerns to discuss, then take notes or get an audio recording of what transpired.) And they stress that many doctors should make more of an effort to listen. They cited a quote by a speaker (Terry Cenala) who told doctors at an American Academy of Orthopedic Surgeons, meeting: “Patients will never care how much you know until they know how much you care.”
  3. Complimentary alternative medicine: Healing occurs most effectively when the body is understood as intimately connected to—not separate from – a person’s emotions, mind and spirit. Discussing this topic, the presenters emphasized that a patient can expect a better outcome when working “in partnership” with the medical professionals, rather than being a passive recipient of whatever treatment the doctor or other practitioner chooses to provide. Offering their ideas, discoveries and insights were Fred Grover, Jr, MD, a Denver family physician whose website, RevolutionaryMD, features a range of topics related to integrative medicine; Sandy Priester, MBA, representing LifeSpark Cancer Resources, who discussed the benefits of the Reiki treatment and other healing methods; and Xiaorong Ding, PhD, speaking about her work at the Center for Traditional Chinese Medicine
  4. Clinical Trials: Steady progress is being made in this area as professionals become more sophisticated about targeting therapies to gene-specific diseases. And new methods of assigning patients to the groups within a study are increasing the numbers of trial subjects who are likely to be selected for the protocol proving to be the most successful. Dax Kurbegov, MD, representing the National Oncology Service Line at Catholic Health Initiatives, led up to this discussion with a fascinating history of what we now call clinical trials. In perhaps the earliest clinical trial, a 1747 experiment involving a crew of sailors, two crew members were given oranges with their meals, and rode out the voyage disease free. Meanwhile, their shipmates, who had received extra helpings of meat and other food items, but no citrus, were falling ill. Thanks to his cleverly planned experiment, Dr. John Lind discovered a way to prevent scurvy, the disease that was felling one ship’s crew after another.

At the conclusion of our final breakout session, I learned how this conference is unlike many other conferences I’ve attended. Suzanne (my wife) and I happily gave up our badges to a member of the staff that organized this event, and we headed for the door. There was no desire to continue conversations we’d had with people we’d met. We didn’t want to exchange business cards. And there was no “after conference” party to attend. That was enough cancer for one day. We were glad we’d attended and happy to leave.

Bill Slatkin talks during the Patient Cafe™ session in March

Bill Slatkin talks during the Patient Cafe™ session in March

As Suzanne and I walked across the parking lot toward our car, it occurred to me that I somehow felt better about my battle with this disease. And it was not just because of new information. I had met and observed a lot of folks bravely facing what I have to face. And I’d been exposed to some very bright medical professionals who are dedicated to helping me and all the other people who, in the occasional moments of despair, wonder why our bodies have turned against us.

All of these experiences: information, connections with fellow survivors, the positive and encouraging attitudes of the professionals I encountered, help me to cultivate a spirit of hope. And I think cultivating hope is an important part of my campaign to become healthy again.