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.