Four years ago, Chuck Colletti, an athletic, gregarious family man from the suburbs of Pittsburgh who had never had any serious health issues, received a diagnosis of stage 4 follicular non-Hodgkins lymphoma.

Soon after, Colletti, 54, began a grueling 7-month chemotherapy regimen that succeeded in putting him in remission.

However, just 7 months after completing the chemotherapy, his cancer came back in a more aggressive form.

At that point, Colletti opted for another traditional regimen of treatment: 4 weeks of Rituxan, a monoclonal antibody.

It didnt work.

A bone marrow transplant was then considered, but Colletti told Healthline that because he had failed two treatments, he was now qualified to enroll in a clinical trial of a new, experimental immunotherapy his doctor mentioned.

It was called chimeric antigen receptor T-cell immunotherapy, better known now simply as CAR-T.

I had been reading about CAR-T. I knew about it and I told my doctor I definitely wanted to do it, Colletti said.

He subsequently enrolled in the Zuma-5 clinical trial of a CAR-T therapy called axicabtagene ciloleucel (Yescarta) from Kite, a Gilead company.

The trial was for the treatment of his lymphoma, which had transformed from follicular lymphoma into diffuse large B cell lymphoma (DLBCL).

The treatment, which came with some brief but serious side effects, has given him a lasting remission.

Im a very positive person. I know how lucky and blessed I am to receive CAR-T. There are many people trying to get it who still cant, said Colletti, who can now enjoy time again with his wife, Brandee, and their daughter, Gabriella.

Colletti is one of a number of people who report that CAR-T therapy not only conquered their cancer, but gave them a better quality of life afterward.

CAR-T involves collecting a persons T cells and genetically engineering them to produce special receptors on their surface that can recognize an antigen on targeted B cells.

The engineered T cells are then infused back into the person to find and attack cancer cells that have the targeted antigen on their surface.

In Collettis case, CAR-T not only gave him what appears to be a lasting remission, it changed his outlook on life.

Doing the CAR-T really made me much more aware of my need to help other people, he said. Not that Im not a compassionate person, but if you had told me 5 years ago that I would be doing public speaking or doing this interview with a journalist right now, well, I was always focused on doing things for work or with my family, just me and my family.

Colletti is now an advocate for his fellow lymphoma patients and for CAR-T, speaking about his cancer journey at Leukemia and Lymphoma Society events, podcasts, and conferences.

He says CAR-T isnt only saving peoples lives, its giving them an emotional boost and greater appreciation of life.

New research supports Collettis contention.

In the study published last month, participants with lymphoma whose disease was effectively treated with a CAR-T treatment called Kymriah reported that their treatment actually improved their quality of life and provided physical, social, and emotional benefits after their treatment was finished.

The study revealed marked improvement in a variety of self-reported quality of life issues.

This study confirms that if you have a long-term remission with CAR-T, your quality of life improves substantially, and in reality most patients return to normal life, said Dr. Constantine Tam, FRACP, FRCPA, a professor at the Peter MacCallum Cancer Centre at the Royal Melbourne Hospital and the University of Melbourne, and an expert in blood cancers.

Tam, an author of the study and member of the research team, told Healthline that the look at the quality of life of CAR-T patients was a companion study to the JULIET clinical trial of tisagenlecleucel (Kymriah) for people with relapsed or refractory DLBCL (r/r DLBCL).

The average age of the trial participants was 56 years and representative of the population with r/r DLBCL in the community. People up to 76 years were included and 23 percent were 65 or older.

The aim of the research, Tam said, was to document changes in quality of life for patients who receive this treatment, which ultimately turned out to be therapeutically effective and hence led to its licensing for r/r DLBCL.

Colletti didnt take part in the study, but he generally agrees with the findings.

I remember how scary it was when I first got that phone call and they told me I had stage 4 follicular non-Hodgkins lymphoma. I know what these patients were feeling, he said.

For me, when I help other people and talk about it, it helps me. I dont sit there in doom and gloom and think about it coming back. I move forward in a positive way. And CAR-T is responsible for that, he explained.

The CAR-T participants were asked questions about their treatment and about CAR-T by the same research team that worked on the JULIET trial in multiple cancer centers in the United States, Europe, Japan, and Australia.

The researchers queried participants on their quality of life using two tools.

One assessed physical, social, emotional, and functional well-being as well as disease- and treatment-related symptoms.

The other looked at the participants physical and social function, health perception, and mental health.

Data was collected before treatment and then again at months 3, 6, 12, and 18 following treatment, unless the participants discontinued participation in the study or their disease progressed.

Out of 108 evaluated participants, 57 achieved a complete or partial response to the treatment.

Baseline scores on participant-reported quality of life outcomes were similar between the total patient population and those who responded to the therapy, but responsive patients demonstrated continued improvement in quality of life measures over time.

Their most significant improvements were in areas of general health, vitality, physical function, and social function.

Many patients with this advanced level of disease become depressed and withdraw, but here patients reported improved functional status, physical capabilities, and ability to interact with people, Dr. Richard Maziarz, a professor of medicine at the Oregon Health & Science University School of Medicine and the studys lead author, said in a statement.

As we progress in our capacity to offer therapies to treat cancers, we have to ask: is it enough to just have our patients in remission or alive, or do we want them to be able to truly live again, and to re-enter society with full function?, he added.

For Colletti, there are a number of ways CAR-T therapy improves quality of life.

He says that for cancer patients, relying on the necessary poisons like chemotherapy and radiation is a double-edged sword.

We are killing the cancer but unfortunately also killing our healthy cells and organs, he said. Having the opportunity to receive CAR-T gives us a treatment that is not only less toxic than traditional regimens, but enables our body to battle this horrible disease from within.

Colletti says that having something inside your body that recognizes the disease cells and kills them is a welcome protocol.

I personally get up every morning thanking God for CAR-T. Knowing that my own body is now in control of my illness and the incredible power it has to keep killing my infected B cells is so reassuring, he said.

Basically having one CAR-T infusion and not months upon months of treatments is a blessing. I have always taken care of my body and now I really think my body is saying, It is time to take care of you, Colletti said.

He adds CAR-T gives him both a physical and emotional boost.

When you know you are an active part of the cure, it gives you such a confidence booster in continuing the fight, both mentally and physically, Colletti said.

It is also much more motivating to keep working on better lifestyle and health practices. When you take all of this and bundle it together, what you get is a more emotional, physical, and mental focus that is sometimes very hard to come by in traditional cancer battles. This is why I feel better about where I am now, he said.

As CAR-T progresses into the next generation and gets more efficient, patients like me will excel because of the knowledge that our own body is part of this solution. Seeing results, feeling results, and hearing complete remission is the ultimate goal. Maybe one day a simple transfusion of your bodys own reengineered cells will be the answer to curing the cancer for good. We can only hope, Colletti said.

Dr. Eric Ostertag, the CEO of Poseida Therapeutics, a San Diego biopharmaceutical company developing next-generation, nonviral gene engineering technologies like CAR-T, says hes not surprised by the positive emotional reaction patients have had to the immunotherapy.

CAR-T is hope for a cure. Its not just a chemo drug that you need to take every few weeks that can have horrible side effects, Ostertag told Healthline. With CAR-T, you can get long-term durable response, or a cure for some indications.

As example, Ostertag points to Byron Jenkins, a Navy pilot who was one of the first multiple myeloma patients in Poseidas clinical trial.

He is ex-military and had played football for [the] Navy. He worked out a lot. He was very fit. But after failing several therapies, he could not get out of bed. He had perhaps only weeks to a few months left to live, and he was getting weaker, Ostertag said.

But Jenkins responded well to CAR-T.

Two weeks later he walked out of the hospital, Ostertag said. Now, almost 2 years later, hes skiing again with his family, surfing, and running sprints with his son.

Ostertag says he doesnt usually get to meet the people who are treated with his companys products.

But he [Jenkins] tracked us down. He flew from the East Coast, the D.C. area, to San Diego unannounced and showed up at our front door to thank us, Ostertag said.

More here:
How CAR-T Immunotherapy Improves Quality of Life After Cancer Treatment - Healthline

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