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

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

Theresa , I had labs and CT this morning and will have Hematology and Oncolgy appointments next week. But just looking in my portal at this morning's test results, the blood tests are all back in the normal ranges. The chest fluid ( pleural effusion ) has gone away. The Spleen is smaller per the CT report and I can also tell it is smaller as I cannot physically feel it anymore. From my perspective, today's tests are good, but  I need to hear it from the doctors.  I do have a slight discomfort in the spleen area, different than it was. Am guessing that is the healing process??? When people ask.... I say   " Age adjusted, I feel great"
We're trying to isolate and wear masks and be careful. So far I have not had any infections, covid or flu. I did receive the covid antibody Evusheld injection after the infusions. I guess the immune system takes a long time to recover from rituximab 3 months to a year. So I will be cautious for a while yet. My family knows I am being cautious and have been helpful and understanding of my situation. 
I was diagnosed with SMZL in June of 2019 and looking back at the blood tests, the Dr thought I probably had it in 2017.
I hope I have answered all your questions let me know if there is anything else. Where are you getting treatments? How many treatments will you get? Hope your infusions go well. ...even the first one. 
Thanks for checking in. This forum has been quiet for a while. I wonder how everyone else is doing?.

Hi Stan, I have not been on here in a while. Are you continuing to feel the benefits of the treatment? After 3 years of watch and wait I am to begin single agent Rituxan in mid January due to my spleen size more than anything else. I believe you mentioned you could feel your spleen shrink, has that continued also? I've been told it will never go back to normal, too stretched out. Thank you for sharing your initial difficulties, as I am forewarned the first treatment is likely rough. The dr. confirmed this likelihood but said that means its working. How did you make decisions about isolation? Were they following your immune factors to help you decide when to rejoin society in general? Hope you did not suffer any infections as they recovered. I don't recall how long from your time of diagnosis to this first treatment. I feel pretty lucky to have had 3 years. I believe I did read an entry in a forum of a patient who received one treatment and never needed another and he was 8 years out! Not my expectation, but good to hear anyway. Good luck with your mid November checkup. Theresa

Colleen
Hello , I completed the four rituximab treatments. The last one was Sept 13. As mentioned, the first was difficult but the other three went well and was just bit tired after each. I feel good and also just received the new covid booster. I have follow up appointments mid November. Thanks for checking.