Seeking information: Splenic Marginal... - Non Hodgkin's Lym...

Non Hodgkin's Lymphoma Friends

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Seeking information: Splenic Marginal Zone Lymphoma

love23 profile image
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.

13 Replies

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 profile image
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

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 profile image
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 profile image
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 profile image
love23 in reply to Andilynn

Thank you! I sure will.

Andilynn profile image
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 profile image
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

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 profile image
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 profile image
skinkade in reply to love23

Checking in to see how you are doing?

love23 profile image
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

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

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