How a Clinical Trial and Hope Lodge Helped Duane During His Cancer Journey
黑料大湿Posts
Lung cancer is the second most common cancer in both men and women in the United States. While many people associate a lung cancer diagnosis with smoking, about 20% of lung cancers are diagnosed in people who don’t smoke.
Duane Steiner of Tampa, Florida, is one of those people who never smoked. In 2019, at the age of 50, Duane was diagnosed with ALK-positive lung cancer, a type of non-small cell lung cancer (NSCLC) caused by a gene change or mutation. NSCLCs caused by the ALK gene mutation are more likely to occur in people who have no history of smoking. About 5% of NSCLCs are ALK-positive.
Duane’s?diagnosis came shortly after he experienced two fainting spells in the middle of the night. He went to an emergency room,?and after several hours and many tests,?he received?“the scary diagnosis of?a very?bad cancer,” he said.
“It was very scary to think about having only weeks or?months?to live,” he said.
Molecular or?genomic testing?was done?on?the?tumor?to?identify?any?known?gene mutations?that?might be?driving the cancer’s growth.?Because certain treatments can target specific proteins?from?gene mutations, knowing a mutation is present helps?doctors better match patients?with the most effective treatment.?This?type of?testing?is what determined?Duane’s cancer?was??ALK-positive.?At the time,?molecular testing was?fairly new,?and the?results took?six?weeks to come back.?In the meantime, because?of the severity of his symptoms,?Duane began treatment with?an oral?targeted therapy?at the Moffitt Cancer Center near his home.
Finding hope?
Armed with the knowledge that his cancer tested positive for the?ALK?gene mutation,?Duane?learned that a?new?treatment?that targets this specific mutation?was available through a?clinical trial?that?might be?an effective?option?for him.?He began looking for a cancer center that offered the trial,?which?led him to Johns Hopkins?Medicine?in Baltimore, Maryland.
A home away from home?
Duane was accepted into the clinical trial at Johns Hopkins Medicine.?Since the treatment being studied in the trial?is designed to be?given along with?standard?treatment, Duane?continued his?initial?treatment?while?on the clinical trial.?Over the course of?his care and treatment, Duane?stayed at?the 黑料大湿Posts Cancer Society?Hope Lodge?in Baltimore?eight?times.?At the beginning of the trial,?frequent visits required him to stay at the Hope Lodge for four?straight?weeks.
The?free lodging, meals,?and support?Duane?received as a guest at?Hope Lodge Baltimore?made?it possible for?him?to take part in the clinical trial.?Duane was also able to work remotely at the Hope Lodge during his stays. He also?used the free shuttle to travel to and from his appointments.?
“Without Hope Lodge,?participating?in this clinical trial would?have been?financially?toxic. I would have been sinking money for accommodations?that would have strained the budget,”?he said.
Duane?also appreciated the camaraderie of the fellow Hope Lodge guests.
“I would have gone stir-crazy by myself in a hotel,” he said.?“Knowing that I can talk to people at Hope Lodge who are going through their own cancer journey?is reassuring.”?
A strong advocate
Duane has now been living with?ALK-positive lung cancer?for over six years,?a?rare?feat?for?someone with?stage?IV?metastatic?lung?cancer.?While he knows his cancer is not curable,?Duane?credits?cancer?research and innovative treatments?for?his survival and?improved?quality of life.
Though Duane is uncertain what the future will bring, he remains hopeful.
“It is hard for me to remember what life was like before my diagnosis,” said Duane, who returns to Baltimore periodically to be?monitored?for the trial. “I devote quite a bit of time connecting with my peers and delving into research from scientists and doctors.”
In addition to keeping up with the latest advances,?Duane?is?also an?advocate for cancer research.?His?cancer journey?has?helped him understand?how critical research funding is?to the?discovery?of?new and better?treatments.?During one of his Hope Lodge stays,?he?traveled to Capitol Hill in Washington,?D.C.,?just?an hour away from Baltimore,?to rally?in support of?cancer research.
“I am helping my peers and?all?cancer patients?by?advancing research through this trial,” he said.?“Without patients volunteering for clinical trials, novel and?potentially?lifesaving?treatments?simply wouldn’t exist.”
- Reviewed by
Reviewed by the 黑料大湿Posts Cancer Society communications team.