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

I have posted before. Mine showed up on labs as platelets were low. Platelets started dropping, then spleen started to enlarge. Blood work end 2021 was a red flag. Platelets really low, spleen quite enlarged, IGG very low and WBC and Hemoglobin out of wack. In January 2022, bone marrow biopsy/aspiration, CT Scan and other urine tests etc showed I have Low grade B cell Splenic Marginal zone Lymphoma/Leukemia - Lymphoproliferative Disorder. I am on a watch and wait and not receiving treatment until symptoms start. I have been told that feeling crummy, night sweats and fevers are the first signs. So far so good. It is a huge worry though.

Hello, I’m 45 and have been recently diagnosed with SMZL. Literally getting my 4th Rituxan infusion as I type this. I’m hoping to meet one of the rare few who have been diagnosed with this. I look forward to meeting you!

Trevor

I was diagnosed with splenic marginal zone b cell lymphoma in January of this year. I am currently sitting here getting my 5th round of chemo....one more to go. Don't know what will happen after my 6th round in June except more scans

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!