Want to connect with others with Splenic B cell Marginal Zone Lymphoma

Glad to hear things are ‘normal’ for you and a bummer getting another excision. I do not like all the cutting.

I’m still waiting and all my labs and spleen growth are moving slowly which is good. I wish there was a way to stop it all. I go back in July for my annual scan. So hopefully all will be good.

Enjoy the rainy day.

I am part of the facebook SMZL support group but not the MZL community. I'll have to look for that. It is interesting to hear how others are doing with their treatments, symptoms, etc.
I feel pretty normal and doing well. I was in Rochester a month ago and oncology said there were no lung concerns and hematology said the SMZL was gradually returning. I have the skin issue now and they have scheduled an excision procedure for the 31st. They will remove more tissue in the location of the previous biopsy. So am hoping that will go OK.
Has your hematologist suggested any treatments or is that a ways off yet?

When I was dx with smzl the doctor said he thought I had it for at least 5 years. So then the skin cancer would be right about the same time. Who really knows though.

I’m doing good in my watch and wait. Symptoms are slowing creeping in more regularly- fatigue, sweats and spleen pain.

Are you aware of the Facebook group? Search SMZL Support Group and also MZL Community - Learning & Research.

How are you doing?

Renee, Thanks for the reply. Since I was diagnosed with the skin cancer, I've read where individuals with less than optimum immune systems have a higher incidence of skin cancer. So this was was the reason for my question. Yours was before the SMZL so I don't understand that. Anyway, unfortunate that both of us have or had 3 cancers. How was your last SMZL checkup? I hope you're doing well. Thanks

I had skin cancer and breast before my SMZL dx. My skin cancer was a bit of an oddball and finally diagnosed as a Meltump which stands for Melanocytic tumors of uncertain malignant potential. It was on the top of my foot. No treatment besides removal. The doctor considered node removal and decided against it.

Just a question and update. Has anyone dealt with skin cancer while having SMZL? and what is your experience? In April, I had a small mole-like thing removed from my shoulder and it was a sebaceous carcinoma. More testing is scheduled.
Regarding SMZL I was diagnosed in 2019, 4 treatments of rituxan in 2022, I had good test results last November. Now my April tests show the lymphoma is gradually returning and back on watch and wait. Thank you for any comments.

Hi and thanks for sharing your story. I’m 45 and was diagnosed with SMZL about 2 weeks ago and had my first Rituxan injection today. Lasted about 8 hrs and actually had a scary infusion reaction within the first 5 min. Thankfully they are able to quickly get things under control and slow it down for me. The rest of the time I was perfectly fine. Anyway, I really appreciate you and others sharing their story and your treatment experiences. There’s so little out there and so hearing from others really helps!

How has your experience been thus far with Brukinsa ( Zanabrutinib) ? Any side effects? Are you taking 320mg each day in two divided doses/
Are you on any other medications for cardiac issues, such as blood thinners for Atrial fibrillation?
Thank you

Elaine. You have probably read through the previous many pages of comments in this discussion. There is alot of information and experiences that relate to Splenic Marginal Zone Lymphoma and, which I understand, is one of the many Lymphoproliferative Disorders. One of the things you'll read is the variety of symptoms that individuals will have and the different therapies that are administered. You mentioned losing weight. This was my concern as well. I think my spleen was large enough to press on my stomach and I would not eat as much. So I tried to eat more and eat more often and kept my weight stable. I did get Rituxan treatment last fall and my spleen reduced in size and I have gained weight since then.
I think you just had an appointment, Anything new or just stay on watch and see? Just curious, what part of the country do you live in and where you are getting care. Thanks

Thank you so much for sending these contacts. My oncologist checks my spleen and, although it is enlarged, it does not need removing just yet.