Clinical Trials

Lainey

Outline: Lainey has been diagnosed with cancer four times since her 30s. She is participating in a clinical trial for her most recent mesothelioma diagnosis and feels great.
Background: Lainey, age 54, is a White woman and mother of two daughters. She works as a corporate account rep and lives with her husband in a rural area in the Mid-Atlantic region.

See full story

Lainey was first diagnosed lymphoma in her 30s, and has since lived through breast cancer, endometrial cancer, and most recently mesothelioma. Learn more about Lainey’s experiences with cancer and cancer risk that runs in families here. Lainey is currently participating in a clinical trial for a drug previously approved for lung cancer that “they’re trying to get FDA approved” for mesothelioma. When offered, Lainey’s motivations were selfless, and she jumped at the chance to do what she could “to help.” Lainey knew “it may not help me, but it may help others” and she was “perfectly fine with that.” Since starting the trial though, Lainey has seen “about a 60% shrinkage” in her tumors “which is absolutely amazing.” Being part of a clinical trial has extended her life and “instead of having maybe a year to live” she can now “look forward to a little bit longer.” This success has made Lainey feel a renewed motivation “to fight this.” 

Specific to the trials, Lainey receives immunotherapy “feel[s] great” even though she “expected” to feel “sicker.” Lainey is a “fighter,” recognizing that “it’s perspective” and refuses “to cry and whine about it” because she’s been there before and is “done with that.” Lainey is a strong self-advocate advocate. She reviews every CAT scan report and prepares questions for her upcoming visits because she would “rather talk to” her doctor about her trail and results than “looking up Wikipedia” because “there is so much information out there.” Aside from having her daughters to “live for” Lainey finds that helping others is her “purpose in life.” Previously, Lainey has felt like she “floundered” and didn’t “really have a purpose” but participating in a trail is her way of “hopefully doing something to help someone.”

 

Lainey joined a trial to help her family and others.

Lainey joined a trial to help her family and others.

View topic summary
SHOW TEXT VERSION
PRINT TRANSCRIPT

You know, I come down here because I—I feel like any information that can be found out about me can help others in my family—my daughters. And also any—my experience may be able to help someone else. I'm participating in a clinical study at this university. So, it can also—I would say, at the beginning, I said, “It may not help me. But it may help others.” And I was perfectly fine with that. But I've had about a 60% shrinkage in my tumors, which is absolutely amazing. So instead of having maybe a year to live, now I can look forward to a little bit longer. And say, “OK, we're going, you know, we’re going to fight this."

 

Lainey appreciates being able to talk about her test results.

Lainey appreciates being able to talk about her test results.

SHOW TEXT VERSION
PRINT TRANSCRIPT

You know, I come down here because I—I feel like any information that can be found out about me can help others in my family—my daughters. And also any—my experience may be able to help someone else. I'm participating in a clinical study at this university. So, it can also—I would say, at the beginning, I said, “It may not help me. But it may help others.” And I was perfectly fine with that. But I've had about a 60% shrinkage in my tumors, which is absolutely amazing. So instead of having maybe a year to live, now I can look forward to a little bit longer. And say, “OK, we're going, you know, we’re going to fight this."

 

Lainey appreciates being able to talk about her test results.

Lainey appreciates being able to talk about her test results.

View topic summary
SHOW TEXT VERSION
PRINT TRANSCRIPT

I get a CAT scan every three months. Between like every third treatment I'll get a, I'll get a CAT scan. And I get a report that shows, OK, when it started, it was this much. Then the next time it was this much. And then this. You know? So they, you know, they take a sample size—not a sample size. But they have measurements. And overall shrinkage is like 60%.

So does somebody talk that report through with you? Or?

Yeah. Yeah. The doctors. And believe me, if I have questions, I'm on the phone with the nurse saying “What does this mean? You know. I'm reading this now.” Because with the patient portals now, that’s been—you know, that's great that you can get that information. Because when I was going through the breast cancer and- and the Hodgkin's, nothing like that existed. Hodgkin's was back in '96, '95. And then the breast cancer in 2003. So that did not exist at that time. So to be able to print that information, and just review it, and- and look at it, and, and–you could get your questions prepared for your next visit: “Well, this happened here, what about this?”, “And I don't understand this, explain this to me.” Rather than looking up Wikipedia, you know, online because there is so much information out there, I'd rather talk to my doctor about it. And then have que-, you know, and he will answer my questions. Or, you know, I call my nurse. She's fantastic. She's like, “OK, this means this. This means that. And I know you're excited. So I just—I'm calling you to let you know your CAT scan was- was great.” You know, that type of thing.

Previous Page
Next Page