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splenic marginal zone lymphoma

benita
Posts: 13
Joined: Mar 2004

I'm 44 years old and have recently been diagnosed with splenic marginal zone lymphoma, a form of NHL that is low grade, stage iv. My cancer presents itself in the spleen and bone marrow only. I have been told several forms of treatment for this and because it is rare, I am wondering if anyone out there has this particular type of lymphoma or knows anyone who does and, if so, how they are being treated for it. I'm currently undergoing chemo to reduce the size of my spleen but have been told that I could remove the spleen or do a mini stem cell transplant. I would greatly appreciate any information anyone has. Thanks in advance!!!

krouff
Posts: 2
Joined: May 2004

I am 41 yrs old, was diagnosed after splenectomy in September 02. No radiation, no chemo. I have hemolytic anemia, which may or may not be associated with the SMZL. Am treated with Rituxan (8 treatments last fall, just completed 4 maintenance treatments). Otherwise- watch and wait. No tumors. Am also stage 4. Splenectomy really turned the corner for me. Not fun surgery, but better since (my spleen weighed 13 lbs).

PWS
Posts: 1
Joined: Apr 2005

Hi...New member with recently diagnosed SMZL....noticed that all the postings seemed to stop last winter....anything new to help me understand the options available for treatment??....thanks.....

sal100
Posts: 6
Joined: Jun 2004

I also have splenic marginal zone lymphoma. My spleen was very enlarged and was removed. Only then could they make a diagnosis. No other treatment and no other signs oflymphoma. I had the splenectomy over 12 months ago. It could eventually return but the doctor tells me that there are lots of things that he can treat me with. However at the present time I am in good health. I might add that I am 75 years of age.
Best of Luck

Randy8487
Posts: 1
Joined: Aug 2004

My brother was just diagnoses with splenic marginal zone lymphoma. His spleen was removed August 9, 2004 and we have an appointment to see the August 23, 2003. We will know more at a later time. since the spleen has been removed doctor mentioned that the swollen lymnodes may go away by themselves. But won't know anything til we talk to doctor.

cmmontgomery
Posts: 1
Joined: May 2010

I am 63 years old and recently diagnosed with SMZL. Spleen was 22 cm and had fever, cough, night sweats and fatigue. Treated with Rituxan and Treanda which reduced size of spleen and resolved symptoms. Will have spleen removed this month. Will follow for two years with Rituxan therapy every 3 months. Doctors very optomistic that this will result in cure. Anyone else had similar treatment? What has been course since?

SGS
Posts: 5
Joined: Apr 2011

I am 55 and was just diagnosed with SMZL myself. Not sure what the prognosis is for me. Have my first meeting with my doctor next month. Hope she has some answers for me.

panistapsa's picture
panistapsa
Posts: 2
Joined: Dec 2009

The prognosis is quite good for SMZL. I was diagnosed in October 2009. Quite often the doctors just wait and watch because you don't want to treat SMZL if there aren't any symptoms like and enlarged spleen.

My body can not tolerate the Rituxan that seems to be the main treatment now.

Just don't panic. If you are gonna get a cancer, this is the one to get.

My mom was panicking when I got my diagnosis and the doctor told her "Your daughter is likely to die WITH the disease not BECAUSE of it"

SGS
Posts: 5
Joined: Apr 2011

I had my first doctor appointment yesterday. The doctor tells me she just wants to wait and watch like you said. But the doctor does want me to come in for blood test on a monthly basis for a short while. It the test results don't change she will do tests every 2-3 months. If I have to live with disease wish I could find a solution to the constant fatigue I have. The doctor says my spleen is slight enlarged. Hopefully that is not a real bad sign.

panistapsa's picture
panistapsa
Posts: 2
Joined: Dec 2009

I've been asking my doctor for a while if taking iron supplements could help as the fatigue is partly caused by anemia (for me anyway). I started taking Ferrous Gluconate (3 times a day) with a stool softener (at night) and feel a little bit better. I can still hear blood whooshing in my ears sometimes but the bone weary fatigue seems to have eased up some.

Someone in a different forum seems to think that iron supplements won't help but they seem to be helping me get through the day. I got the okay to take it from my doctor (he says the ferrous gluconate variation is easier on the bowels and it seems to be okay so far).

The doctor is now looking at FND or CHD chemo for me. I did find a protocol for desensitization to Rituxan so I'm gonna hand him that paperwork to see if I'm a candidate for that treatment. Sure would be nice to be able to take the stuff that works.

Here is something I copied from another forum because this post did so much to make me NOT PANIC about being Stage IV cancer (Credit to John Von Ostrand):

I was diagnosed with SMZL in May 2010 and was treated with CVP-R. the R is rituximab, also known by the trade name of Rituxan. The treatment gave me a week-long mild hangover, as a result it was considered moderate chemotherapy. I didn't have chloramucil.

Firstly don't be too concerned about being classified as stage IV, most peope with SMZL have bone marrow involvement and it does not impact survival rates significantly.

If you are otherwise healthy you have a very good chance of living a very long time. In fact I have not been able to find out what people with SMZL die of. It seems most die of other things. Since SMZL affects older people (50% are over 64) there is a good chance other maladies contributed to the death statistics.

You also need to read between the lines of reports about SMZL survival rates and understand exactly what the reports are saying. Overall survival (OS) is a common stat that does NOT consider the cause of death. That means someone dying in a car accident on the way home from being diagnosed is still considered a death due to SMZL. Remember that most people with SMZL are retired, there's a good chance other diseases are causing fatalities.

Another common stat is failure free survival (FSS). This doesn't measure death, it measures relapse only and SMZL patients should expect relapse every few years. So a FFS of a few years doesn't mean death, it just means more week-long hangovers. It's kind of reminiscent of youth.

The other issue to consider with stats is that medians are misleading. Google search for "The median is not the message" by Stephen Jay Gould. He offers a very good essay describing the limitations of median statistics. If you read the statistical reports make sure you read this too.

Finally the other issue with stats is that they are old. As an example take a report that was created 8 years ago. It list patients who were diagnosed perhaps 10 years prior. If you do the simple math you realize that the patients were diagnosed almost 20 years ago and were treated with 20 year old treatments. That was about the first time that SMZL was recognized as a different form of lymphoma. Many of those patients were previously diagnosed with other forms of lymphoma and treated improperly. So effectively these patients were diagnosed late and may have received improper treatment. Then consider that treatment has advanced in the last 20 years. Rituximab didn't exist back then and is extending remission wonderfully. So someone diagnosed today is diagnosed earlier and has better and more accurate treatment.

Let me tell you a little more about myself. I was 44 when diagnosed with a freakishly huge spleen due to SMZL. It was the size of a ream of copy paper and pushed my intestines and stomach to the right side of my body. My spleen took up the entire left half of my abdomen. A normal spleen is the size of a fist and is tucked up under the rib cage on the left. After the first chemo treatment my spleen had returned to normal size.

I have been told to expect to relapse every few years and require treatment. I was told to expect to live a long time and to consider SMZL to be like diabetes, not curable but treatable. I have many years to wait for better treatments.

It may help you to know that SMZL is not like other cancers and it's not like other lymphomas either. SMZL is slow growing. It's like this because, unlike conventional cancers, it's not caused by runaway growth, it's caused by abnormal cells that don't die. It's not destroying organs like conventional cancer. It's a lot of really old white blood cells that the spleen is holding until they die. Chemotherapy kills off those extra cells and may be required every few years. It's also not like other lymphomas because it rarely transforms into an agressive form. Folicular Lymphoma, on the other hand, sees about 45% of people transform within 15 years of diagnosis. With SMZL I'm told it's about 15%.

After having researched, collaborated and thought about this for almost a year I have come to realize that as long as I stay healthy I can live a long time. That means losing weight, exercising and eating better. If I don't stay healthy then heart disease or another cancer is likely to take me well before SMZL every will.

Cork_H
Posts: 2
Joined: Apr 2011

Hello Everyone - Not sure how to initiate a new comment here, so replying to SGS. I am 58 now and was diagnosed with SMZL last August by discovering an enlarged Spleen and subsequent blood test. Didn't start Rituxan until January of this year and will do my last treatment (8 total) on Monday, April 18. Spleen size has been reduced until I cannot feel it by "poking" any longer though I'm sure it is somewhat larger still because of pressure when I eat more than I should or certain "heavy" foods. Dr. says he is pleased with progress. WBC count is back in the mid-teens now.

About the only side-effects have been bad reaction to the benedryll the first time, so take it in pill form now and that did the trick. After the first treatment, I had severe flu-like aches/chills, headache, etc for about 2-3 hours, then only fatigue for a few more hours. Subsequent treatments have been pretty good with little to no after-effects escept mild fatigue/weakness for a few hours, but no achiness.

Some other things I noticed that I wanted to find out whether anyone else was experiencing are constant sinus-like congestion for several days at a time which usually starts early in the morning before I get up with dull head ache in back and top of neck. This usually goes away by itself or with one dose of ibuprofen. The other thing I have noticed is sporatic moderate cramping of calves and feet! This may not be related to anything other than minimal physical fitness type activity since I have been on the treatment cycle. Has anyone else experienced any of these types of things?

Additional things I am doing along with the Rituxan treatment are nutrition focused like almost exclusively eating whole foods (70% raw), juicing everyday (this helps enzimes to be absorbed a lot quicker), and going gluten free. I also do not eat much meat any longer (not a vegan though)- one of the reasons was that meat is so heavy and takes so long to digest and was very uncomfortable with my spleen being so large. Also, I am being treated by an Upper Cervical Chiropratic Specialist (UCCS) - this started for something else, but it makes sense to make sure that all the nerves to the body are operating at full capacity as every part of us is regulated by nerve impulses from the brain. Just one more was to stay in the best health possible. In addition, I have an unwaivering faith in the goodness and grace of God and feed my spirit daily from His word.

My energy level is excellent and I feel great most of the time. LIke most of you, I have come to realize that if we have to have cancer, SMZL is the one to have...I fully expect to live a long and prsoperous life...Look forward to getting to know some of you better and I will keep this group in prayer each day. God Bless.

les1904
Posts: 2
Joined: May 2011

Hi,
I was just diagnoised with smzl and reading your post realised that we have a number of similar things, I have been very tired sleeping at least 9-10 hrs a night, hot sweats, cramping, every so often sinus headaches etc in fact most mornings i wake with a hangover feeling (but without having had the drinks)

I read an interesting article in the english papers that people who have been taking a certain type of pill (mainly found in a uk brand) but also found in tylenoil (sorry about spelling just had minor surgery for an insertion of a port today so a bit out of it) if taken over a long period leads to blood cancers!
I have been gluten free/wheat free no coffee for ages but would like to find more info on the best foods to eat to improve my immune system.

les1904
Posts: 2
Joined: May 2011

Hi, my name is les and I was just diagnoised with this rare thing.......I hope you have received informative information. I am starting my treatment in the morning with retunix, apparently although it is rare it is also slow growing. no one in this state (new mexico) appears to have it, and of course I got it as it is free so why not??? I am english but with a wicked sense of humor, and some great friends supporting me, when I was first told I had leukemia I was not a happy bunny but then being told over the phone is rather tactless but the more i find out about it the better I feel. feel free to respond to me, I just joined this so not sure ouw it works. Good luck and stay positive. Les

forme's picture
forme
Posts: 1161
Joined: Aug 2010

Hi Les,

I met you on chat tonight, this is an old thread . May I suggest that you start a new one. I am sure that if you say "new here or rutuxin" you will get lots of answers. Just click post new topic to start a new thread. There are some really great people in this group.
Welcome

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