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Patients helping patients: Readers making a difference

Home/News, Research/Patients helping patients: Readers making a difference

Patients helping patients: Readers making a difference

Efra, a reader from Israel, forwarded me an interesting article about cancer research–done at Mayo Clinic here in Jacksonvile. I got such a kick out of that. Love it or hate it, the internet helps keep us connected. What a small world!

Cancer researchers dream of the day they can force tumor cells to morph back to the normal cells they once were. Now, researchers on Mayo Clinic’s Florida campus have discovered a way to potentially reprogram cancer cells back to normalcy…

Here’s a link to the article Efra found in Science Daily:

Discovery of new code makes reprogramming of cancer cells possible

Readers are one of my best sources for myeloma news. My good friend, Cindy, better known as @MyelomaTeacher on Twitter, passed along this article about a mutual friend, 18 year myeloma survivor, Jim Omel, from Nebraska. Here’s the first part of the article. It’s really good:

TURNING A NEGATIVE INTO A POSITIVE Omel more than ‘an expert’ on myeloma

Posted: Sunday, August 23, 2015 – The Grand Island Independent
By Tracy Overstreet

Jim OmelWhen Grand Island cancer doctor Dr. M. Sitki Copur read the July 10 edition of the ASCO Post, the trade publication for the American Society of Clinical Oncology, there was a familiar face on the cover — his neighbor, retired Grand Island family practitioner Dr. Jim Omel.

“Dr. Omel is not an oncologist, but he is a myeloma expert,” Copur said. “He is in the loop. He knows everybody, not only in the United States, but in the world, including the International Myeloma Foundation; he knows every single person who is dealing with myeloma as an expert.”

Omel smiled at the label of “expert” on myeloma — a blood cancer that nests in and degrades bone.

He smiled at the label primarily because he felt blessed to have become an expert — having lived 18 years with the disease after being told in 1997 that he would live but three.

“It’s by the grace of God,” Omel said of his survival.

Omel missed his own diagnosis for the better part of a year. As a busy doctor at Family Practice of Grand Island, Omel attributed growing back pain to a lack of proper exercise and improper lifting of his wife, Pat, whom he cares for due to her multiple sclerosis.

But the night before being on call for the 1997 Thanksgiving holiday, Omel was doing sit-ups in an effort to strengthen up. He felt his back break.

“It literally popped,” he said. “The bone was eroded, it was like an eggshell, and pretty soon collapsed.”

He managed to maneuver around with his wife’s scooter and headed out for rounds that holiday, where a fellow doctor saw him and advised Omel he needed to step back and be a patient, instead of the doctor.

That’s when an X-ray revealed the break in his back — miraculously not damaging Omel’s spinal cord. A simple blood test that followed revealed the cause — multiple myeloma, or myeloma for short.

“I was devastated,” Omel said. “Multiple myeloma was, and still is, an incurable cancer.”

Omel gathered his family around — two daughters, two sons and his high-school sweetheart bride from Giltner — and shared the grim diagnosis. At that time, myeloma killed 97 percent of its victims in fewer years than can be counted on one hand.
He prepared to die.

He sold his coin collection, his pharmacy bottle collection and other investments.

“However, a funny thing happened on my way to dying … I lived,” Omel later wrote in an article for CR, a magazine for the American Association for Cancer Research.

He underwent radiation, went back to work and started to lead a local myeloma support group that still meets from 10 a.m. to noon on the third Wednesday of each month at Evangelical Free Church in Grand Island.

“It’s a support group that isn’t about whining … it’s informational,” Omel said. “We explain the disease. We explain new treatments.”

And he does so in an caring and personal way — being a myeloma patient himself.

“He is a very intelligent, kind and compassionate man,” said myeloma support group member Illene Drake of Axtell. Omel’s 18-year survival with the disease creates hope, Drake said. The information he shares is “encouraging.”

“He provides pamphlets and brochures and invites in speakers,” such as representatives on new cancer drugs, Drake said.
Omel provides all that — and knows every group member and their spouse by name.

“You come in and he says ‘Welcome Illene. Welcome Rollie,’” Drake said. “He’s uplifting. He makes you feel good.”

She said he never imposes his direction and is consistent on urging patients to work with their own oncologist, but he helps patients understand their treatment, conditions to watch for and provides reassurance.

That work showed Omel how valuable his physician background was in researching and understanding his disease — and how much assistance he could provide to others in his shoes who have been diagnosed with myeloma.

So after a 2010 relapse that lead to a stem cell transplant and his retirement at age 53, his medical career took a new turn.

“What I’ve done in my retirement, is to use my medical knowledge to help cancer patients,” Omel said. Even through additional relapses in 2006 and 2010 and his own radiation and chemotherapy treatments, Omel’s voracious reading and knowledge, attendance at national conferences to meet the leaders in the field, and time and willingness to serve myeloma patients has launched him into some key positions.

At first, he declined an invitation to join the National Cancer Institute’s patient advisory board for a four-year term, believing he wouldn’t be around long enough to fill the term. He thankfully rethought that position.

Omel now works as a volunteer with the National Cancer Institute in Bethesda, Maryland, which oversees and helps design all clinical trials. He also works with the U.S. Food and Drug Administration as one of 160 patient representatives nationwide, three of which have myeloma. Those patient representatives represent various diseases and are called upon to serve on the FDA advisory panel to review the research behind new drugs being considered for approval.

“One of my most proudest times was sitting on the panel to approve carfilzomib, which is a very good anti-myeloma drug,” Omel said. It is a proteasome inhibitor which makes it hard for a cancer cell to get rid of its waste, similar to another anti-myeloma drug called Velcade.

“There will be three new drugs that come to the FDA in late 2015 or early 2016 and I hope to be on one, two or all three advisory panels,” he said.

Such medications are key to the progress in treating myeloma patients, he said.

Six new drugs have been developed through trials since his own diagnosis. But too few patients are part of trials, Omel said. Only 3 percent of adult cancer patients are part of trials. The remaining 97 percent are not — for various reasons including, the patients may not hear about the trials, their doctors may not know about them or the patients may be too afraid to try a trial…

I recommend you read the rest:

http://www.theindependent.com/news/local/omel-more-than-an-expert-on-myeloma/article_54ce54aa-4a07-11e5-9a46-1f96297e826e.html

Jim and I have broken bread together a number of times at ASH conferences over the years. Jim helps out the IMF from time to time, in addition to his work with the NCI and FDA. Hopefully our paths will cross again at this year’s ASH.

I found the next one. Another warning about risks of developing secondary cancers. I posted the AP article on Help with Cancer.org:

Cancer survivors beware: risk of getting cancer again high

 

The danger is even higher for us. Most cancer patients don’t stay on chemotherapy indefinitely like we do.

Back to the premise of my post. Interconnected myeloma patients and caregivers are an important and powerful force! Patient activism is at an all time high. And we’re making a difference! I get emails daily from readers, thanking me (and you) for helping them make sense of our complex and emotionally disarming cancer.

Pharmaceutical companies have taken note; they’re reaching out to patients for help developing and marketing their drugs. The IMF and MMRF involves patients and caregivers whenever they can. The FDA has even started listening more to patients (see the article about Jim Omel above).

The myeloma patient community is making a difference. I’m proud to be a part of that.

Feel good and keep smiling! Pat