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

Hi Laurie, I just saw this post - I hope you are still doing well!

I just went thru a battery of tests at UMN cancer clinic over the last 2 months and it now looks like I have SMZL. I have had PET scans with contrast, a bone marrow biopsy, and plenty of blood tests. They are just waiting on the lymph node biopsy to narrow it down further.

I'm 64 and thought I was in good heath until my WBC showed up above 30k during a routine physical last Nov. Really not much in the way of incapacitating symptoms so far.

Due to my high WBC and low RBC counts, my doc thinks that I might need to due a round of rituximab within 6 months if my counts get worse.

Would love to know what you have learned in the last 4 yrs!

Paul

Hi,
Guess I could say managing, next Tuesday is last Chemo. Back pain is awful, fatigue, no hair, short term memory! Thankful not much nausea.
Thanks for asking!

Welcome, @paris1943. How are you doing on chemo? What side effects are you managing?

I have SMZL and have had Spleen removed and in my 7th Chemo treatment, have one more to go! Not sure what is next beside a CT body scan next week.

I'm sure BB I had SMZL in 2022 but no one diagnosed it. My former oncologist wouldn't even discuss it. In January 2023 went to the ER because I was in a lot of pain and hadn't been able to eat. My BB WBC was be 1.5 and my BB spleen is was 22 cm. My new oncologist who thought he was seeing me as I was 6 years into my diagnosis of breast in cancer sent me for a bone biopsy and it came back with splenic marginal zone lymphoma, stage 4. That was on a Friday. By the next Monday I was getting Rituxin and Bedamustine along with Neulasta 2 days a month for 6 months. Just CT scans and nothing else!!

Lori. Hello. The October appointments will probably dictate if they'll do treatment or continue watch and wait. I feel pretty good now, so we'll see.
A year ago when covid was more prevalent, I felt the Hematologist preferred to stay on watch and wait as long as possible.

Hi @stanleykent, do you think you’ll have another round of Rituxan to decrease the spleen enlargement? Wishing you only good news on your upcoming October appt. ☺️

Sunfishgirl. It's nice to hear from you and current treatment. I see you have taken Zanubrutinib for 6 months. How long will you be taking this or is it a permanent schedule? It's good to hear your blood work is in a normal range. I hope things stay positive for you.
For me, a year ago I had the 4 Rituxan treatments and feel pretty good this past year. Luckily I have avoided covid, flu, and infections. I can tell my spleen is getting larger again as was confirmed by my April appointments. My next checkup is later in October,,,,,, labs,CT, bone biopsy.
Thanks for your update.

Hi @sunfishgirl! Thank you for update about your treatment and the good news that it’s working! Think positive that you won’t relapse and the Zanubrutinib will keep you in remission. I don’t think anyone likes taking meds but when they work, it helps take the sting out of the daily chore a little. ☺️
I hope you have a great doctor visit in October with only good news! Thanks for checking in and let us know how your appt goes!

Thought I’d give a quick update on my treatment with Zanubrutinib. Mostly good! I’ve been on it for six months. Had some bruising for a few weeks but that went away. I have had a bit of constipation and deal with it via probiotics and dried apricots. I’ve had three blood draws and all results were in the normal range. Will see my Dr in October. I am still not thrilled to have to take pills twice a day yet remain grateful for this treatment and others that wait in the wings for when I relapse once again. Some say a cure os five years away.