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

Thanks for the update.
I have only had Rituxan last Sept. and actually had to google Zanubrutinib. Looks like it is one of the chemo paths for relapsed patients. It will be interesting to see if others comment, as well as your experiences as this could be my treatment path someday. Will it be a weekly infusion like Rituxan? I hope it goes well for you, Keep us updated.
My only update is my recent bone marrow biopsy. Since I had those treatments, the Hematologist was pleased with the results. The lymphoma involvement in the bone marrow was reduced, He did say that it would have been nice to see more reduction but results fell within what they typically see. Blood tests were back in normal ranges. As for now I'm back on watch and wait and will have my regular appointment in late April.

Update: yes, I’m relapsing and progressing so it’s out with Rituxan and in with Zanubrutinib in four weeks time. Dr says he’s had phenomenal results with Z and predicts I will do well. Hope he’s right.

Has anyone else taken Z for smzl?

Welcome, @ntichenor. I'm tagging @theresad2 @stanleykent @cdwilm27 and @sally2022 to bring them back into the discussion about SMZL and treatments to share their experiences with you.

I assume you've started IVIG treatment to help improve your IGG and IGA levels. How are you doing?

I just found this site and I also have SMZL. I was diagnosed in2019. I had treatment in 2021 and have been doing great. I just went to my oncologist this past week and was told I need to start IVIG do to very low IGG and IGA. Can anyone give me their experience with this. Thank you

Hi Stan. I am 71, married, have two children and have been blessed with three grandchildren since I was diagnosed. I was diagnosed in 2019 after telling my Internist that I was having little fevers for an hour or two every day for two months. I felt 100% fine. She drew blood and all hell broke loose, medically speaking. She sent me to a hematologist who declared I had CLL (which my father died of in 1995) and ordered a bmb, a ct, a pet scan etc. All the above tests were unnecessary I now know. Fortunately I had quickly joined a CLL society support group where a very knowledgeable member referred me to a top CLL world specialist. He ordered many more blood tests, and an ultrasound of my (enlarged) spleen, and concluded that I had smzl not CLL. After three months I trended toward anemia and my platelets were low so I received four weekly rituxan treatments. All measures bounced back to normal after the second infusion. Lately the fevers have returned, and my appetite is diminished so I believe I might be relapsing. My platelets have declined and my hemoglobin and hemocrit are low. I’ll be seeing him in January and will take it from there. He said “We know rituxan works well for you so if you relapse that will be effective again.” Time will tell.

I’m grateful that our disease is indolent and highly treatable. That being said, I do sometimes worry about Richters transformation, reduced immunity and diminished energy. I’m still working half time and am physically active— pickleball, swimming, long walks. Like everyone, I’m hoping to be able to continue an active life style.

My SMZL journey began October of 2021. I was having night sweats and my PCP did labs that were found to be extremely abnormal. My spleen was 23 cm and the cancer was also found in my bone marrow. I had 8 treatments of Rituximab. Last December my labs and spleen normalized and I have stayed that way in 4 follow up appointments. My oncologist is calling this a tentative remission. I have been living life to the fullest since my diagnosis. I ended a toxic relationship, sold and bought a new home, auditioned and won a part in play, had a light case of Covid, became a pickle ball player and began a new, healthy romantic relationship. I am attempting to eat cleaner and drink a lot of water.
At my last follow up last week a 4 cm descending aortic aneurysm was noted from last year's CT. I had a CT this week and the aneurysm is the same size it was a year ago. I will be seeking a vascular surgeon as a precaution.
Merry Christmas and Happy Holidays to everyone reading this note.

Sunfishgirl. Thanks for checking in. I hope you are doing well. I expect you may have read through some of the previous pages of comments. There are quite a few that have commented in this forum but it has been fairly quiet lately. I'm hoping no news is good news.
I'm always interested in hearing from others and their experiences. SMZL seems to have a lot of symptoms, many different diagnosis and treatments. If you can share, let us know how this has occurred with you and how you have dealt with it and the medical care you have received.
Thanks for the facebook suggestion, I'll check into that.

Hi. I welcome connecting with others who have smzl. Also, hope you are aware of the Facebook smzl group. This is a rare disease and heterogenous so we need to share any info we can.

Theresa. The appointments went well. Oncology was pleased there were no areas of concern and will see them again in the normal 6 months,
Hematology was pleased with the infusion results. All the blood tests were in normal/acceptable ranges. They will do a bone marrow biopsy in late December to actually see if or how much lymphoma is in the marrow and will establish a new baseline. The lymphoma will gradually come back and cause problems again someday and probably more treatments. Everyone is different and this could take anywhere from one to ten years. Anyway, all is good. I'll also see them again in 6 months.
I sure hope you infusions go well. Are you getting the covid antibody injection, Evusheld? I received it at the end of the first infusion day.
I hope you have a great Thanksgiving and Holiday Season.
Stan

Hi Stan,
Thanks for your response; it helps to share experiences. Maybe our discussion will prompt some others to let us know how they are doing. Like you, in hindsight it's obvious I had this long before I was actually diagnosed. My white count had been low for years. If I remember right, your white count is usually high? That is so strange to me to see the two extremes in the same disease. I feel good but I look forward to not having my spleen and my stomach fight it out for space when I eat. This last exam the doctor noted shotty lymphadenopathy in other areas, which was concerning to me. It's time for treatment. It's going to be hard not to visit my grandchildren, I usually go once a month. I am getting Rituxan at my local oncologist's center just 10 minutes from home for which I am grateful. This was arranged by my lymphoma specialist in UVA which is 3 hours away.

How did your appointments go? I hope they were able to confirm your labs are good. I can not really imagine having normal labs again; I'm sure it feels great! My doctor did advise me to wait until mid January to begin treatment because he expects there to be an uptick in flu and Covid with all the holiday traveling. Stay safe and enjoy your Thanksgiving. We do have so much to be grateful for.
Theresa