BY MICHAEL RICHARDSON Published in the March 2015 of Healthy Magazine
Cancer looms as an almost impossible hurdle in the eyes of many. Research is progressing quickly, but people are still dying, and cures seem so slow in coming. With many cancers, patients feel like their fate is sealed, that they’re powerless in the face of such a mighty enemy.
While cancer’s devastation leaves many in a truly powerless state, two women with myeloma are showing the cancer community just how big an impact individuals can have for progress.
Jenny Ahlstrom and Lizzy Smith decided to help even though nobody asked them to, because they couldn’t just sit and wait for the end to come. Both started with little understanding of medicine or myeloma, but four years later their work has significantly advanced myeloma medicine and has shaken the perception of what a cancer patient is capable of.
Myeloma (a.k.a multiple myeloma): Cancer of the plasma cells in the bone marrow.
According to the National Cancer Institute, about 45 percent of patients survive 5 years. In 2014, 11,000 Americans died from myeloma. More than 80,000 Americans live with the disease.
After Jenny was diagnosed and began to progress through different treatments, she worried about relapsing and looked for new treatment options. She found a complicated world. She was interested in joining a clinical trial for myeloma research, but found 450 such trials to choose from, and didn’t understand much of what any of them were trying to do.
She began to see that the large majority of myeloma patients (and cancer patients in general) didn’t know much about their disease, and therefore couldn’t offer much input to their medical professionals or researchers. Myeloma, and many other cancers, have multiple avenues of diagnosis and treatment, and patients are often unaware of important tests they haven’t taken or treatment options they haven’t been offered.
But the doctor should be directing treatment, not the patient, right? True. But Jenny says the outcomes from care vary widely for myeloma patients, depending on who they see and what treatments they get. Those who see a myeloma specialist can expect to live years longer than someone seeing a general oncologist. She says people who don’t see a specialist are often seeing only half of the story and half of the possibilities.
Patient education is vital, Jenny says, because it gives hope, improves quality of care, and helps research progress.
So Jenny took action. She began interviewing leading myeloma researchers and publishing a radio program that now has an international audience and more than 500,000 listeners. Jenny and Lizzy launched a myeloma website (myelomacrowd.org) that has hundreds of thousands of visitors, where they interpret complicated research language for a normal reader. A quick glance at the numbers suggests that Jenny and Liz are reaching an enormous portion of myeloma patients, and the numbers are growing.
Pushing Research Forward
On the radio program and on the website Jenny and Lizzy work to dispel misconceptions about clinical research and educate patients about opportunities to participate. It is essential that cancer patients get involved in clinical research, for a variety of reasons:
One reason why cancer patients don’t join clinical trials is because they don’t understand the trials and what may be involved, or don’t want to feel like a guinea pig. The website and radio shows are changing that, at least for myeloma research.
“It’s been extremely valuable,” Jenny says.
Many cancer patients are diagnosed, and just sit around and wait for “smart” people to cure them, Jenny says. They don’t realize how much researchers value a patient’s support and help. She says researchers love that someone is spreading the word about their work, bringing them participants, and interpreting the findings.
“My whole approach has been, ‘how can I help you do your job?’” Jenny says. “I don’t feel like I need to get permission to help. Researchers don’t have time to distill their research down and explain it to patients. We’ll be their marketing arm, in a way.”
Of course not everyone with cancer is capable of rallying to the research flag. Cancer and its treatments bring exhaustion, illness and other debilitations that make what Lizzy and Jenny do largely impossible. Others find themselves completely overwhelmed and therefore immobilized.
It may be for this type of patient that Jenny and Lizzy have done their greatest work. Their website brings together myeloma patients in a powerful way, and patients who were once alone now have a thriving support group and a steady stream of comprehensible, up-to-date information from trusted voices that helps them get the best treatment for the best outcomes.
“Peers give the power of hope,” Lizzy says.
Peers and education about the illness are big reasons why Lizzy says she isn’t afraid of the disease.
From Chronic to Cure
As Jenny and Lizzy dug deeper into the myeloma research scene, they found that much of the funding and research initiatives were directed at developing treatments for myeloma as a chronic condition. In other words, researchers were trying to find ways to extend the life expectancy of a patient, rather than search for a cure.
This represents a disconnect between patients and researchers, Jenny says. She, along with the majority of patients, care little for such research, and would rather see funds devoted to research for a cure.
This year, the Myeloma Crowd Research Initiative, which Jenny and Lizzy had a key role in creating, seeks to fix that disconnect, by bringing together doctors, researchers and patients to discuss research direction. This is important because it is able to compromise the various opinions in the myeloma field. Some have little belief in the possibility of a cure, others have more hope.
“You need scientific validation, but you also need patient input,” Jenny says. “You need all stake holders involved.”
Some may see Jenny and Lizzy’s story as two rabble-rousers wreaking havoc among cancer doctors. But the truth is, oncologists have told Jenny that she knows more about myeloma than many cancer doctors.
An important argument for patient involvement in these processes is the story of a drug called thalidomide, now one of three staple drug classes for myeloma. A patient had heard about this drug, and asked the doctor if it could be used, even though it wasn’t accepted as a worthwhile treatment. The doctor tried it, mostly out of compassion for the patient, not out of faith in the drug. Eventually, this doctor found that the drug brought excellent responses in many patients.
This hopeful urgency is what a patient has to offer, and it can be valuable.
“The patient has the motivation of living life and death every day,” Jenny says.
Understandably, many feel hopeless in the face of cancer. But Jenny says that there is value in a patient being his or her own advocate.
“My efforts help me cope,” Jenny says. “It’s like it flips a switch where you were the victim of cancer and you transition to being an independent person who has the freedom to act.”
Keys for Every Cancer Patient
1.Find the right oncologist or specialist.
3.Get involved in clinical trials. This will help the patients in your generation and following generations.
4.Get connected with others.
5.Don’t be afraid to get a second or third opinion.
about the author
Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can help accelerate a cure by weighing in and participating in clinical research. Founder of HealthTree Foundation (formerly Myeloma Crowd).