Anyone living with aggressive B-cell non-Hodgkin lymphoma (NHL)?

Welcome, @josepg, I'm tagging other members like @fwpoole @emmiet @jals @kirkwilliams2049 @j0318, who have experience with diffuse large B cell lymphoma. To help you connect with them, I moved your post to this discussion:
- Anyone living with aggressive B-cell non-Hodgkin lymphoma (NHL)? https://connect.mayoclinic.org/discussion/non-hodgkins-lymphoma-aggressive-bcell/

I believe @emmiet also has gastric lymphoma.

Please note that I removed your personal contact information according to the Community Guidelines https://connect.mayoclinic.org/blog/about-connect/tab/community-guidelines/ You will be able to use the secure private messaging in a few days. However, I'd also like to point out the benefit of sharing here in the support group where you all receive support and information from several people and learn from each other. And other people with a similar diagnosis will join in. 🙂

Jose, I'm sorry to hear that several of the treatments you've tried have not worked. I look forward to hearing what your oncology team suggests next. Has CAR-T therapy been mentioned as a possible option for you?

I'm rooting for your husband, even though I don't know him.

I was diagnosed with DLBCL NHL in September 2021. It was in my stomach lining, and the weight loss was drastic — over 20 pounds in 2.5 months. However, once I found the right team, I started to gain weight even before I started treatment.

I underwent six rounds of R-CHOP--3-week intervals. After the 3rd chemo treatment, my PET scan showed no traces of the rogue cells. I tolerated chemotherapy well and continued to walk and exercise throughout the 18-week treatment.

I found it essential to have something to look forward to. So, I decided to learn photography, which I incorporated into my walks. I set a goal to start traveling to vegan-friendly places where I could walk after I was cleared to travel. In October 2022, 7 months after my last chemo treatment, I traveled to Amsterdam and Switzerland and ate my way through my trip. It was glorious.

I find that my mindset plays a big role in my recovery.

Note: There are many details in between and after, but I have provided the highlights.

I had CAR-T therapy 18 months ago. I am happy to discuss the treatment and the surrounding circumstances on your request. I have been treated to remission twice in the past 10 years.

I was treated with 6 rounds of RCHOP for DLBCL in early 2016 to remission. I relapsed in June 2022. At that time it was considered indolent. In October of 2023 I became very ill and it was determined that the Lymphoma had become very aggressive. I had significant abdominal pain and was so short of breath that I needed a wheel chair to be transported in the cancer treatment facility. I was treated with 3 rounds of RGDP which started to severely degrade my kidneys. The RGDP had cleared up most of the lymphoma in my abdomen but a spot on my duodenum persisted. My team then decided to do CAR-T therapy in February 2024. It was magic. I was kept under observation in hospital for 2 weeks. I experienced no side effects and felt well the entire time. By the end of March, I was declared in remission. Now 15 months out, I am still in remission and still feeling well.

I should note that I am in a clinical trial and have received very excellent care. I wrote this for my clinical trial coordinator:

We wander through the desert, between the purple dusk and the golden dawn, spirits grasping at borrowed time.

Yet in the stillness, you bring light—

A steady hand,

A gentle voice,

A beacon for the weary,

A comfort to those we love.

For years, you have touched so many,

Guided by grace, by kindness, by spirit.

Here’s to the hope you give,

Here’s to the peace you sow,

Here’s to the lives forever changed by the gift of your care.

Michelle, Notre belle

Sont des mots qui vont très bien ensemble

Notre Michelle!