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SMZL

Concern
Posts: 2
Joined: Sep 2017

Good Morning, I was diagnosed with Splenic Marginal Zone Lymphoma B-cell Non-Hodgins around 2 years ago.  I had my spleen removed last June in order to make a true diagnosis of cancer.  I know this type of cancer is slow growing and is rare.  I was wondering if anyone that has this cancer had a relapse and if any scans or tests were done to detect a relapse.  I know this cancer can invade a major organ and I just want to be proactive so when I do relapse I will know as soon as possible (the doctor told me I would relapse in 5-10 years). I would appreciate any and all feedback.  Thank you.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3467
Joined: May 2012

I recall several SMZL writers here in the last two years or thereabout, Concern. A couple within two months or so. As a generality, indolent (slow-growing) cancers are more prone to relapse, not less (I know this from my non-spleenic form of HL).   Usually relapse is confirmed via CT/PET.  Spleenic may necessitate more specialized tests whith which I am unfamiliar.  Presumably, you are in some form of long-term followship, which most Best Practices centers insist upon.  By this I mean at least 5 years, but I am in lifetime annual checks, per my cancer centers insistence.  I assume you are in at least six-month oncology visits at this point, which are ordinarily extended to one annual after about 2 or 3 years in full remission.

I recommend you go to the CNS Email funtion and privately email screen names djwilzig and dan6807 .  Email both separately, to increse privacy.

Both of these individuals have written to the Boards since 2016, as you no doubt noted yourself on the other thread that you began here on.    Depending on their personal settings, the CNS system will send them an email telling them that they received mail for the Boards.  This will make them aware of discussion regarding SMZL, even if they no longer visit the Boards very often.  Good luck.  Just a suggestion, to get faster response. I get these emails frequently, and they are confidential and much quicker than hoping a reader will just spot something at random on the Boards.

I'm sure some of these or other folks with personal SMZL experiences will write soon,

max

cuddlefish's picture
cuddlefish
Posts: 3
Joined: Jul 2016

Hi,

I also have SMZL, though mine was diagnosed only last year. In my case, the spleen was left in place and I am receiving infusions (and now injections) of a monoclonal antibody drug called Rituxan. These "maintenance" treatments will continue another year and then I'll be cut free like you. Because our cancer does not typically show in lymphnodes, I think that we will be monitored by blood work to determine when we need further treatment. From my research, this does not typically progress into other organs. As I am choosing to think about it, it is very likely that we will simply need to be treated every several years, as our blood numbers indicate. When I received my diagnosis, the oncologist reassured me, " This probably won't be what kills you". I hope that helps you a llittle.

Ruth

Eversuperb
Posts: 1
Joined: Dec 2017

I was originally  diagnosed with monoclonal b-cell lymphocytes in 2013/14.  Since  then I have been feeling fatigued and in June of this year after a bone marrow  biopsy,  I was re-diagnoised with smzl.  My main problem  right now is anemia and related fatigue. I am not receiving any treatment at the moment. Will be going to  city of hope in December for 2nd opinion.  Does anyone else battle with anemia?

Kmsparky's picture
Kmsparky
Posts: 3
Joined: Jan 2018

I was diagnosed in December 2017.  I presented with a spleen of 22cm, fatigue, anemia and low platelets.  Bone marrow is 75% B cells and the B cells are also in my peripheral blood. Currently am being treated with rituximab (3/4 treatments completed). I was diagnosed with an enlarged spleen (14.9 cm) in 2013 but it was not followed up.  I meet with my onc on Feb. 22.  Not sure where we will go from there but I can tell you that after the first infusion, within days i noticed my spleen was beginning to shrink.

MCL
Posts: 6
Joined: Jan 2020

I was just recently diagnosed with SMZL. My spleen is 17 cm.  I am wondering how the Rituximab treatments were for you. 

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

I was diagnosed with anemia when I was about 13. Fortunately an over the counter iron pill has worked for me and still does.When I was going through treatment I would be asked about feeling tired. My reponse "I always feel that way to some extent".  Still do but some of it is my sitting around too much.

ShadyGuy
Posts: 529
Joined: Jan 2017

I had anemia really bad about 1 year before I was diagnosed with lymphoma. Ironized yeast tablets along with b-12 was what my doc recommended and it really seemed to help. The yeast is easier on you than straight iron supplements (Gas).

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

After years of taking an iron daily I am now forbidden to take them. Reason is the blood transfusions I had when getting the RICE. It loaded me up with iron but we didn't know that until after almst 2 years of Rituxan. During that time I was still taking the iron pill daily. So it was 6 months after I finished the Rituxan my oncologist did a more comprehnsive blood test and that is whe the red light when off. (She was also going to have me go on the annual visitation plan.) So I still see her every 6 months. The counts are going down. 

zsazsa1
Posts: 485
Joined: Oct 2018

I decided to hop on over here and see if I could find some people who were in the same boat, who might be able to share info and support.

I have just been diagnosed with SZML.  I probably developed it over four years ago, but that's a story for another day.  I had the misfortune of developing an aggressive, rare uterine cancer which was diagnosed in September, 2018.  At the time, it was felt that the enlarged spleen had nothing to do with the uterine cancer, and the treatment of the uterine cancer was felt to be the most urgent matter.  I completed (mostly) treatment for that in June, 2019.  There's a decent chance I won't relapse.  In the fall of 2019 I began pushing the workup for the enlarged spleen, and after ruling out all other possible reasons, sought the help of a different oncologist (not the one who was treating the uterine cancer), who has made the diagnosis of SZML based on the enlarged spleen and the flow cytometry results.

New oncologist is recommending Rituximab plus dexamethasone, but she urged me to get a second opinion.  I'm in Hartford, and it's very easy for me to get down to Yale, where I am already hooked in with a specialist for medical onc for the uterine cancer. I'm hoping that there is a lymphoma specialist at Yale who has experience with SZML.  My insurance will fight my going to Dana Farber or Sloan Kettering, I know, from having fought covering those places for the uterine cancer.   I kind of felt like I wanted to have a splenectomy, but now that I see that the most common cause of death for non-hodgkin lymphoma is infection, maybe not.  I just cannot believe that lightning has struck me twice - two rare cancers at the same time.

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