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

I was diagnosed in Nov 2019 with the startling discovery of NHL, B Cell in my spleen. My spleen had grown to twice its normal size and I received 4 rounds of Rituxan in January 2022 and my numbers have come down. My next scheduled follow up is next week & prayers that it is still reducing. (However I feel part of my stomach is growing again). Any current posts or updates on this? Thanks

Hello, I've not written in a long while. Lots happening in my personal life.
I was diagnosed with SMZL in Oct 2021. My spleen was 3 times the normal size, I had terrible night sweats and my H&H was 9.9 and 32. Bone Marrow biopsy revealed cancer cells were present there as well.
I had 8 infusions of Rituximab over the course of 10 weeks. My labs were nearly all within normal limits on December 20th and again on 1/21 as well as my spleen was nearly normal. I did have another BM biopsy in late January which revealed the T-20 cancer cells were gone, but there were some T-19 cells that were present, non cancerous at this point.
I did have a 2nd opinion with Dr Javier Munoz at Mayo on 12/7 and he thought the current course of treatment was correct with Dr. Salganick at Ironwood Cancer center.
My next appointment is 6/28. However I did see Dr. Salganick on April 19th regarding the return of some light night sweats. He stated he did not want to go to the next level of treatment if I could live with night sweats on and off. I agreed with this. Waiting to see what my labs reveal in June.
As for my personal life; my husband of 19 years and I have Legally Separated, sold our home and he has moved to Florida and I am now in a new house in Peoria. I am trying to continue healthy eating, exercising and a Zen attitude. It is strange and makes my head spin when I consider all the changes in my life since the diagnosis in October. However I do feel that I can focus on my wellness in my new environment.

Theresa, Yes, am sure looking forward to spring and summer, seems like it is finally getting here. It is interesting that my WBC is going a different direction. Maybe SMZL presents itself differently for different folks. Am curious as to what others have experienced while they are watching and waiting. I think you were contemplating a second opinion,..... were you able to contact anyone? Stan

Hello, I've not written in a long while. Lots happening in my personal life.
I was diagnosed with SMZL in Oct 2021. My spleen was 3 times the normal size, I had terrible night sweats and my H&H was 9.9 and 32. Bone Marrow biopsy revealed cancer cells were present there as well.
I had 8 infusions of Rituximab over the course of 10 weeks. My labs were nearly all within normal limits on December 20th and again on 1/21 as well as my spleen was nearly normal. I did have another BM biopsy in late January which revealed the T-20 cancer cells were gone, but there were some T-19 cells that were present, non cancerous at this point.
I did have a 2nd opinion with Dr Javier Munoz at Mayo on 12/7 and he thought the current course of treatment was correct with Dr. Salganick at Ironwood Cancer center.
My next appointment is 6/28. However I did see Dr. Salganick on April 19th regarding the return of some light night sweats. He stated he did not want to go to the next level of treatment if I could live with night sweats on and off. I agreed with this. Waiting to see what my labs reveal in June.
As for my personal life; my husband of 19 years and I have Legally Separated, sold our home and he has moved to Florida and I am now in a new house in Peoria. I am trying to continue healthy eating, exercising and a Zen attitude. It is strange and makes my head spin when I consider all the changes in my life since the diagnosis in October. However I do feel that I can focus on my wellness in my new environment.

I was diagnosed in May with splenic marginal zone lymphoma. For the past 6 years I have been dealing with Itp. Now it turns out that it was smzl.I had my spleen removed in July. Now I am waiting until April to have another bone marrow biopsie to see if the lymphoma in my marrow go down. Does anyone have any advice?

Congrats on the good report Stan! It is always a relief to have those check ups behind for a while. So interesting that SMZL can present with both high and low white blood cell counts. My WBCs have been progressively lowering for years, since before the actual diagnosis. Now I cheer when they are near 3. Thanks for sharing the encouraging news. Enjoy spring, it's always wonderful to start getting out doors again.

Regarding covid vaccinations, I received my second covid booster Wednesday and for me was less reaction than the first booster. Just a tiny bit tired or ill on Thursday. They said my first booster was a full dose and the second booster was a half dose. All have been Moderna. During my Wednesday Hematology appointment, we talked a bit about my immune system. With SMZL they know my immune system is less than normal and encourage getting covid boosters when available as well as other approved immune boosters, especially since covid is around. Some treatments are new and based on drug availability and qualifying per CDC and State dept of health guidelines.
Laurie, I'm not familiar with term ivig infusion, so cannot help you there.

With respect to my SMZL, the bone marrow and blood tests reconfirm the June 2019 diagnosis, with no major changes. Since last October, it has progressed slightly and the spleen is a bit larger. My platelets are holding steady at 114, White blood count was up a bit to 13.4. I will remain on watch and wait.
Not SMZL related but I also had an Oncology appointment. There is a bit of fluid in the chest but they feel this is from my Nov. surgery. Also is a lymph node or nodule that is a bit larger to follow up on. It is not in the lung itself. All in all, were pretty good reports. Stan

Renee,
I've lost track of some posts and replies but wanted to check in and also ask a question of you and the group. I had great results from my bloodwork of late last year, and just had another checkup. Unfortunately, my bloodwork coincided with the trail end of a cold and my numbers were slightly elevated. (I had tested negative for Covid but had sore throat, slight cough, and tiredness.) My ocologist mentioned an ivig infusion, telling me he has a "low threshold" for that procedure. My proteins aren't at scary levels but I could tell he was suggesting I could have the ivig to bolster my numbers. We left it that if I have recurring colds or other symptoms I should have it done. I know that I've been trying my best to live healthy and manage my immune system without any infusions, and that saying yes is acknowledging this is a cancer that I have little control over. (That's a tough realization for me.) However, I realize this is a resource I probably should take advantage of, especially with Covid still lurking. Can anyone offer insights about side effects or other issues with ivif? I am due for my second Covid booster - sounds like side effects are similar to covid shots - I always end up with flu-like symptoms. Beginning to dread that about every issue but think I need to buck up and deal!!! Hope you are well and your health is steady! Laurie

Renee,
I've lost track of some posts and replies but wanted to check in and also ask a question of you and the group. I had great results from my bloodwork of late last year, and just had another checkup. Unfortunately, my bloodwork coincided with the trail end of a cold and my numbers were slightly elevated. (I had tested negative for Covid but had sore throat, slight cough, and tiredness.) My ocologist mentioned an ivig infusion, telling me he has a "low threshold" for that procedure. My proteins aren't at scary levels but I could tell he was suggesting I could have the ivig to bolster my numbers. We left it that if I have recurring colds or other symptoms I should have it done. I know that I've been trying my best to live healthy and manage my immune system without any infusions, and that saying yes is acknowledging this is a cancer that I have little control over. (That's a tough realization for me.) However, I realize this is a resource I probably should take advantage of, especially with Covid still lurking. Can anyone offer insights about side effects or other issues with ivif? I am due for my second Covid booster - sounds like side effects are similar to covid shots - I always end up with flu-like symptoms. Beginning to dread that about every issue but think I need to buck up and deal!!! Hope you are well and your health is steady! Laurie