Hello @scsimpson, and thank you for posting your first post.

My knowledge of splenic marginal zone lymphoma is a bit limited, but I am understanding that it is a type of B-cell lymphoma that affects the spleen. We do have some members talking about B-cell lymphoma, and while they may not be in the exact same situation as yourself, they may be able to provide some incite and experiences to share with a bone biopsy and the waiting for results. @ginpene05, you recently mentioned you were diagnosed with Non Hodgkins Lymphoma after a bowel resection recently, do you have anything to share with @scsimpson (If you are replying by email, click VIEW & REPLY so you can see their original post) about having a bone marrow biopsy or any advice on the waiting for answers and diagnosis?

I'd also like to invite @travelgirl to share her thoughts with the waiting for tests as she has follicular lymphoma (another type of B cell lymphoma) and is on a wait and watch approach with her physicians. @jwilson11 has also underwent a bone marrow biopsy for follicular lymphoma and may be able to share their experience with that. Although these are not the exact same lymphomas, they are from the same B cell family and may share some commonalities.

@scsimpson If you don't mind, and if you are comfortable, would you mind sharing a bit more about yourself and your situation? You mention LTP, could you clarify what that stands for?

My diagnosis is large B cell and follicular non Hodgkin lymphoma. All I know about waiting for pathology results is that you just have to wait. That gives you time to google it and get your questions ready! I know the waiting is tough, that the I information should be available immediately, but that is that. I have never had a bone marrow test.. Good luck.

Diagnosis of b cell non hodgkins splenic lymphoma . Treatment: 4 weekly treatments of ritixan. Has anyone had their spleen removed when diagnosised?

Has this non Hodgkin lymphoma been discussed where it has progressed to the lung area?

Hello @waltera. You may notice I moved your discussion and combined it with a discussion of the same title. In this discussion, you can read @scsimpson's experience. I'd also like to invite @andilynn, @grand4, @bordercolliecra to this discussion to share their experiences with splenic lymphoma.

@waltera, has your cancer spread to this area or is this something that is suspected?

My name is Laurie and I was diagnosed almost 2 years ago with SMZL after routine bloodwork for an ortho procedure. I wasn’t officially diagnosed until after a bone marrow biopsy. I am extremely lucky to have been diagnosed early, and quarterly bloodwork find me remaining pretty stable. I am 64 years old and fairly active.

Has anyone seen or heard about healthy lifestyle models for SMZL patients? There isn’t a lot of research because we’re so rare, but I’d like to be as proactive as possible and find resources on diet, exercise, and mindfulness as it pertains to the immune system. So happy to have found a current group!

Hello Renee! I love your question and even though I have not found a great deal of research due to the rarity of SMZL, I have discovered that regular exercise and a whole diet have helped. I am also a diabetic, for which I have my A1c tested every nine months. A1c is an average blood glucose reading over a three month span. Those 3 months prior to each test, I am fastidious about my exercise and diet. This last time, my SMZL bloodwork was at the same time. My results for each appointment showed excellent numbers. I do not think it's a coincidence.

That being said - I don't think there is magic to being proactive - but it is challenging to always be "good."

Good luck with the bone marrow biopsy. I had an excellent team (there were 4 or 5 people in the room) with one person at my head whose job was to keep me comfortable. You'll walk out of the procedure but there is discomfort - just wanted you to be prepared.

I would really love to continue talking with you - since SMZL is usually a "wait and watch" condition - it can be frustrating to do just thatt and I rarely find people who want to talk about it!
Laurie

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

Lori,

Yes this will be my first bone marrow biopsy and I appreciate your advice. I will definitely opt for lala land and snacks! Thx. R

Hello, it has been a while since I posted anything regarding my SMZL treatments. I have finished the initial 4 Rituximab infusions on 11/4. My labs have improved significantly, especially the H&H. I feel great and I have somewhat plateaued with my weight loss. My spleen went from 23 centimeters to 16. My doctor wants me to have 4 more infusions which will start on 11/29. I also have my 2nd opinion appt at Mayo on 12/17. I changed my diet completely to cut out as much sugar as I could. (prior to this diagnosis it was a major part of my eating habits) I drink alkaline water mostly and organic fruit and vegetables whenever possible. The nutritionist at Ironwood said the most important thing to concentrate on while getting the infusions is eating protein and drinking a lot of water to flush out the Rituximab so it doesn't linger after it's done killing cancer cells.