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

Hi @jmdfullerton -

I was diagnosed with an aggressive non-Hodgkin B-cell lymphoma, Diffuse Large B-cell Lymphoma (DLBCL) in December of 2023. By the time of diagnosis, I had multiple tumors in my body, including the brain so mine was also classified as CNS lymphoma.

Because the tumors were widespread at diagnosis, my treatment did not include radiation and instead consisted of 8 rounds of intensive chemotherapy (4 Matrix treatments alternated with 4 R-CHOP treatments). I also struggled with mouth ulcers until I started rinsing 2-3 times daily with baking soda & salt. You can find reference to using this mixture on the Mayo and Sloan Kettering sites if needed.

I had good results with my treatment so sending my best wishes to you and your husband for a good result with his treatment.

@jmdfullerton, I add my welcome along with @j0318. Given that your husband is getting treatment for a tumor found at the base of his tongue, you might also appreciate the discussions in the Head & Neck Cancer Support Group here: https://connect.mayoclinic.org/group/head-neck-cancer/

Here is a discussion related to mouth sores related to chemotherapy treatment:
- Mouth Sores from chemo: When do they go away? https://connect.mayoclinic.org/discussion/mouth-sores/

Caring for your husband, how are YOU doing?

Thank you we will look at this group also. Mouth sores are slowly getting under control thankfully.

Hello
Happy to hear your treatments produced positive results. My husband as well is having positive results and is undergoing 6 aggressive chemo sessions (RCHOP) as well. He is pleased that his voice is much clearer now as the tumour shrinks.

Thanks for the rinse info - he is now doing this along with a “magic mouthwash” that was prescribed.

Keep well

Glad to hear that your husband is seeing good results with his treatment and already feeling some relief. I was also given a magic mouthwash to use while in the hospital for the first Matrix treatment. It was helpful in numbing the pain thru those first weeks so hopefully your husband will get some relief using that while the mouth sores heal. Take care of you both and best wishes for continued healing.

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.

Mi nombre es Jose. Tengo un linfoma B difuso de células grandes gástrico. A nivel pélvico destaca un conglomerado adenopático en cadena ilíaca externa izquierda y además. dos lesiones en cúpula hepática.He recibido dos ciclos de R CHOP, radioterapia, un ciclo de R ESHAP y dos ciclos de inmunoterapia con EPCORITAMAB. Además, tengo trombocitopenia inmune, actualmente bajo tratamiento de romiplostin.Estoy a la espera de una nueva cita para saber con qué tratamiento tengo que seguir, ya que los anteriores no me han dado resultado. Si alguna persona ha pasado por la misma situación y enfermedad que yo, no dudes en compartir tu experiencia por aquí. Si eres personal médico también me ayudaría saber tu opinión al respecto de mi caso.Muchas gracias y un saludo a todos.

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 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.

Hi @josepg,

I was diagnosed with Diffuse Large B-cell Lymphoma (DLBCL) in December of 2023. By the time of diagnosis, I had multiple tumors in my body (stomach, lungs, brain). Because of the brain tumors, mine was also classified as CNS lymphoma.

My treatments at Mayo Clinic consisted of 8 rounds of intensive chemotherapy - 4 Matrix treatments alternated with 4 R-CHOP treatments. The Matrix treatments required hospitalization each time for chemotherapy administration and additional days for recovery before release.

I had very good results with these treatments and was showing resolution of all tumors on the mid-treatment scans (PET and brain MRI) and continue to show remission on continued follow up scans. Hopefully your medical team will find a treatment plan that will work for you as well.

Sending you best wishes for finding an effective treatment, improved health and healing.