Seeking information: Splenic Marginal Zone Lymphoma

[love23]

Hi, just wondering if anyone else here has Splenic Marginal Zone Lymphoma; and if so, can you share your journey so far? I was recently diagnosed (Stage 4), and should begin treatments soon. I will continue researching, but would appreciate any insight regarding symptoms, treatments, etc.

[aixman]

Hi, I have Splenic Marginal Zone Lymphoma (SMZL). I was diagnosed two years ago following a routine blood count, and I have been on Watch & Wait (no treatment) since then.

I have two suggestions for you:

(1) You can join the Facebook SMZL Support Group with more than 100 patients:

facebook.com/groups/1505232...

(2) you can read the blog of an SMZL patient here:

spleniclymphoma.com/

[love23 in reply to aixman]

Thank you for your message and helpful information. I joined the Facebook group last week and have learned so much. I will start treatments Thursday.

I hope you are doing well, and wish you all the best!

Lisa

[Andilynn]

Hello, I was diagnosed with stage 4 SMZL in 2014 following abnormal blood work. A bone marrow biopsy and CT scans confirmed the disease. I had multiple enlarged nodes in the chest, abdomen and pelvis and the spleen was 22cm. I was immediately started on IV Rituxan therapy once a week for four weeks. That was followed by the same drug every 8 weeks for one year, then every three months for a second year. I am still in remission now and see my oncologist every six months for bloodwork and annual (or so) CT scans. Please keep us posted on your journey. I pray you will manage it well. Feel free to reach out to us, we are all here for you.

~ Andi

[love23 in reply to Andilynn]

Thank you for sharing. This is very helpful and much appreciated. I will start treatments Thursday. My local oncologist told me this first one will be rough (6 hours). I will he doing one per week for four weeks as well. I believe the plan is to take a look at everything again two months post-treatment and go from there.

I hope you are in remission and doing well. Thank you again for your support and sharing!

All the best,

Lisa

[Andilynn in reply to love23]

Lisa,

Please keep us posted. I hope your treatment goes smoothly. Get plenty of rest and drink lots of water afterward. Know that we are here for you.

Best,

Andi

[love23 in reply to Andilynn]

Thank you! I sure will.

[Andilynn in reply to love23]

Hi Lisa,

I’m just checking in to see how you’re doing. I suspect you’ve had a few treatments by now.

Best,

Andi

[love23 in reply to Andilynn]

Hi Andi,

Thank you for checking on me. Treatments went really well; and as of last month I am in remission for now. I hope you are well!

Thanks again!

Lisa

[skinkade]

Hi,

Welcome. I hope your treatments go well. I was diagnosed in 2016 with SMZL stage 4 as well. They had a difficult time determining what I actually had as my initial symptoms were not typical. I had 9 Gazyva treatments (which is standard). Unfortunately, my cancer came back and transformed to Diffuse Large cell lymphoma in 2017, I started treatment again in 2018 (Rchop). and have been in remission since 2019. Drink lots of water, take care of yourself and you will do fine. Best of luck.

[love23 in reply to skinkade]

Thank you so much. I will actually have my first treatment tomorrow as there was a little mixup with insurance. I’m excited to get finally get it done, but also nervous.

I’m glad to know you are in remission. I hope you stay well.

Thanks again for the support and tips!

All the best,

Lisa

[skinkade in reply to love23]

Checking in to see how you are doing?

[love23 in reply to skinkade]

Hi,

Thank you so much for checking on me. I am in remission for now and doing well. How are you??

Best,

Lisa

[skinkade]

I'm still in remission as well, since February 2019. Glad to hear your good news! Take care.