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

Renee, I hope your visit to Mayo is helpful for you. While I was at Mayo, I found the American Cancer Society office to be to informative. Just stroll through, it has quite a library of books, pamphlets, and at times, offer some talks/presentations on various topics. It's a fairly large glassed-in area on the west side of the Gonda lobby on the ground floor ( street level). Let me know if you have any questions.

I do find activity is great for my attitude and I am glad I am able. Walking and talking with a friend on a nice day is an important part of my self care. Unfortunately my spleen is so enlarged (21 cm) some things like yoga only increase my awareness and concern. I just got clearance to wait another 6 months before I repeat studies so I am happy I can let it go for the summer. It does help hearing how others cope. Let us know how the April visit goes!

Thanks for the tips. I appreciate you taking the time to share your experience and advice. Renee

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?

I will be going to hematology and endocrinology. Thanks for all your advice.

thank you for the paper, it was very encouraging about treatment. I am now due back for repeat studies in 6 months and during that time I hope to settle on a second opinion professional. I am certainly considering the Mayo Clinic. My local oncologist has put the ball in my court at the present. I am slowly developing a self care routine with activity and connections that increase a sense of well-being, but I'm still trying new things. It's a balancing act between denial and obsession I'm getting better at.

Laurie,

Thanks for getting back to me. I agree about the challenges about being good - healthy diet and exercise. The most challenging thing for me is the fatigue. I use to be much more active and it’s exhausting being tired.

I am a breast cancer survivor so I already am working hard at being healthy. I do admit last night I had some sweet potato chips - yummy!

Thanks for the bone marrow info. Clearly something I am not looking forward too.

Yes, continuing to connect would be nice.

It’s getting cold in Minnesota. Enjoy the day. Renee

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

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