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anyone fighting SMZL splenic marginal zone lymphoma

IsabelleY
Posts: 1
Joined: Aug 2010

I was diagnosed with smzl a couple of months ago. Currently undergoing chemo therapy with cladribine and rituxin. The spleen is already starting to shrink and I am having little negative response to the chemo, essentially just fatigue and a little chemo brain. The big debate between my two oncologists was getting a splenectomy or not. I may need one down the road, but I opted for the chemo and save the spleen. I have read that this seems to be a successful approach now. I am just concerned about long term survival and spreading to other areas. Any one out there also fighting this type of cancer. I have read that it affects only 1 to 2 percent of people with non hodgkins lymphoma. And the remission terms can be relatively long. I am 63 years old and really hoped to see my grandchildren grow up. Thanks for your input. Isabelle

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

Welcome Isabelle,

Sorry you are here but you are very welcome. I personally have not had any experience with your kind of cancer, but I also started out with a pretty rare type too. Lymphoplasmacytic lymphoma which is about 1% of all lymphomas, and MALT which is about 7% of lymphomas. Now with this last relapse it's changed to Follicular.

It's hard to find information and the search is exhausting. This site has helped me so much.

Take care and good to meet you,
Beth

onlytoday's picture
onlytoday
Posts: 596
Joined: Jun 2010

Isabelle,

I was diagnosed with Nodal Marginal Zone Lymphoma in May. I am stage four and am currently being treated with 4 weeks of rituxan therapy. My understanding of Marginal Zone (Splenic or Nodal) is that they are indolent lymphomas (slow growers) and although they are not curable they are extremely treatable. It's a chronic cancer so we can expect to see it again and get treated again through out our lives. My onc explained to me that the lymphoma should not shorten my life. The treatments will wear us down though. However, there has been a lot of progress in recent years in lymphoma treatment so just think what they might come up with in the next few years! It's a sophisticated disease in that it is quite complex. Ours, being one of the rarest, follows along the lines of Follicular for treatment plans in many cases. I'm sorry I don't have any helpful info about the spleen issue.

But I'm 58 and I fully intend to see my future grandchildren go to school and grow up!!!!!

I hope this helps and I hope you take advantage of this sight. Great, great people that will inspire you! My best to you.

allmost60's picture
allmost60
Posts: 3177
Joined: Jul 2010

Hi...I'm day 3 first round of chemo, so I'm just going to drop in and welcome you. I don't know anything about the kind of cancer you have, but I do have grandbaies. The oldest is Chelsie 20, then Charley 18...children from my oldest son Charley Sr. age 41. My youngest son Josh is 31 and him and his wife just found out they will have a baby in May. They've been married 11 years and been trying. We will see our grandbabies grow up Isabelle...just keep the faith. Please keep posting for support...this group is the best!
Love...Sue....(F-NHL-stg3-gr2-typeA)...my cancer.

NeilD
Posts: 1
Joined: Sep 2010

Hi Isabelle,I was diagnosed with SMZL last September at 44 years old.Iam currently on watch and wait as I have no symptoms but my white blood count is rising so treatment will be necessary.I think the debate about removing the spleen or not has changed a lot due to the very good response our disease has with Rituximab which you are having now.I think that splenectomy is a major surgery and so if you can avoid it at this stage then it is one less thing to worry about,however you do have this option at a later date if you need it.As regard spreading to other areas this disease plays pretty well as it doesnt tend to show in the lymph nodes and is generaly only seen in the spleen,blood and marrow.The one danger to us is that it may transform into a full blown lymphoma that is very agressive but the chances of this are 10-15% so not very high.I would say that at the age you are that you will have a pretty normal life expectancy with this disease and probably die with it rather than of it.If you go to yhe leukemia and lymphoma society web site there are a few people on it that have our disease who have posted.
best wishes Neil

LeonardoCC
Posts: 3
Joined: Mar 2006

hi neil

i returned to this site this morning after a long absence.

i am sorry to hear of your diagnosis, but am assured smzl is the type of cancer we would wish to have compared to others. i have been assured smzl is treatable and i will probably depart the planet for other reasons.

my doctor has not treated smzl before, but he has consulted with smzl experienced oncologists from the lower 48. my treatment seems routine. i finished my last round three weeks ago. we have both surveyed the literature.

i am interested in chatting with you and others who have been diagnosed with smzl.

hoping to hear back from you and meanwhile wishing you good health

leonardo

mjadickinson
Posts: 1
Joined: Nov 2010

Mum just diagnosed with STAGE 4. I am panicking!! She on watch and wait and will go back in 6 weeks. I am told no cure and that they can only prolong things. Does this seem right?

Please help me.
Julie

JeannetteAnn
Posts: 6
Joined: Sep 2010

My lymphoma started in my spleen. It had to be removed because there was no other way to diagnosis. There was a "spot" in the spleen. The spleen is too vascular to cut into. A person supposedly would bleed out, so they removed it. I remained in remission from 2001 until 2006 after removal. In 2006, two more "spots" were identified in my abdomen and biopsied and found to be lymphoma again. I then had Rituxin infusions for approximately 2 years, including maintenance. I have now been relapsed since March, 2010. I have B-Cell, indulent, non-hodgkins lymphoma. Does this help at all in knowing whether you will relapse? I am 61 years old. I also have 3 grandsons and 1 on the way. I too wonder if I will live to see my oldest graduation from H.S. He is 8-1/2 years old. He doesn't know I have cancer; none of them know. I prefer it that way. The oldest gets worried and upset easily for me. I lost both my parents a few years ago (15 months apart) and he was very protective of me back then. Depending upon your grandchildren's age, I might suggest you not share your cancer with them; please forgive me if I am over stepping on the grandparent issue. Jeannette

allmost60's picture
allmost60
Posts: 3177
Joined: Jul 2010

Hi Jeannette,
There is no issue we can't talk about or disagree about as far as I'm concerned. I don't think anyone should "ever" judge how another decides to handle situations in their life. I'm a peacemaker and for me, as long as people feel loved and are safe, then that is all that matters to me. I love everyone. All of my family, friends,neighbors, kids and grandkids know I have cancer. We have sat down and discussed in detail what my type of cancer consists of. I have given them all reading material from the cancer clinic and keep them up-dated on my day to day, week to week progress. I come from the thinking that as long as I'm honest and up front...no secrets, no lies, there is nothing we can't work out as a family. When I married my husband 32 years ago we had 2 rules...no cheating and no leaving. Work it out, talk it out, fight it out...whatever it takes...just don't ever give up and walk away, and never ever cheat...(that one is a total deal breaker). Anyways.. this has worked for us through all of the good times and bad times. I will be 60 Sept 30th, so you and I are about the same age. Didn't mean to rattle on, but I'm listening for trucks to pull up, so I'm just trying to keep busy. This group keeps me sane, so I might be popping in and out all day today......(everyone is probably saying.."Oh goody" and rolling their eyes)...ha!ha! Love...Sue

joanna50
Posts: 1
Joined: May 2010

Hi Isabelle,
I was diagnosed with SMZL in April 2010. I had 4 Rituxan infusions in May and 3 iron infusions in July. My spleen has shrunk to 13.5cm and my bloodwork looks pretty good. My spleen was largest at 18cm before treatment. It's still not normal size but I can return to activities I like with caution. Doc said my spleen should normally be 8-10cm. I will have no further treatments at this time, just bloodwork and doc visit every 3 months. I would love to chat with you.

barry75
Posts: 1
Joined: Oct 2010

Diagnosed with smzl recently. Does anyone know any data on surgery versus Rituxan remission rates and duration. I am really conflicted but must make a decision soon. Oncologist recommends removing spleen..I dont want major surgery if there are reasonable alternatives. Im 66. Thanks for any help!

Betty_A1
Posts: 1
Joined: Jan 2011

Hi Barry,
I hope you are doing well.

I'm writing on behalf of my father who is turning 84 in March and is in the "same boat" as you were in Oct. He has SMZL and has had no treatment to date. His spleen has grown to 18 cm below the costal margin and his hemoglobin has dropped to 8.5. We have seen 3 oncologists and 2/3 recommend splenectomy and the other Rituxan. My dad is in good health otherwise except for a couple heart stints and lives independantly. He wants more energy (raise hemoglobin) and to reduce (or remove) his spleen.

Did anyone give you advice and how did you decide what to do? How are you feeling?

Anyone else have experience with a splenectomy or Rituxan alone?

Any advice or guidance would be greatly appreciated.

Betty

spirit64's picture
spirit64
Posts: 3
Joined: Oct 2010

I have just been diagnosed with SMZL and will begin my first treatment on 11/5. I am in Georgia and will be treated at Emory University.
My treatment is a clinical trial called VR-CHOP. I am 56 years old and very confused about everything. I would like to keep working and supporting myself. I am told I am stage 4.
If you have any further updates, please share. I do not yet know how to utilize this board.

LeonardoCC
Posts: 3
Joined: Mar 2006

hello spirit64

again, i regret hearing of your diagnosis.

this morning i just saw several other posts - including yours - from persons diagnosed with smzl.

i have not had an opportunity to chat with fellow smzl patients since my diagnosis almost three years ago.

i wish you well in your treatment and hope you will find support and information from other in this network.

please let me know if there is anything i can do to be of assistance.

best wishes,

leonardo

Karen55
Posts: 1
Joined: Dec 2010

I am new to this board as well. I am 57 and was diagnosed with SMZL 2 years ago. I live in a small town, however, my blood tests showed "something" but they could not diagnosis me. I became anemic and my spleen grew to 8 lbs (even though I am thin, I didn't know it) and I was started to have trouble breathing (it was pushing on my lung) and they took it out. They made a huge cut and the recovery was over 4 months--it was by the far the most pain I have ever gone through. It's in my bone marrow too. They took out 2 small lymph nodes near the spleen and it was in those. I'm stage 4 too. Needless to say, I am scared. I am seeing 2 Drs...one is a regular Onc and one is a regular/homeopathic onc. There is nothing they can do now. I am not showing any symptoms so I'm in the "wait and see" mode. I am taking tons of vitamins, staying away from red meat, pork, processed foods and trying to eat mostly organic. I hope it helps.
It is hard to get your head around...at first I thought "I know what I'm going to die from" but because this disease can be very slow growing, and the drugs you mentioned seem to keep it resting. Something else may actually get us in the end. They told me stage 4 for this type of cancer is very misleading and it's not like a stage 4 in other cancers.

I would like to know how long I have before I get symptoms...I read one person got 5 years before she had to take the drugs. I would also like to know, is there a life expectancy for people after they start taking the drugs?
Karen

spirit64's picture
spirit64
Posts: 3
Joined: Oct 2010

Well it is 8 months later. I was stage 4 and was told I had a lot of disease in me as well as enlarged spleen. I went through 8 cycles at Emory University in Atlanta, Ga. I was on a clinical trail called VR Chop which had Velcade included. I had to have 8 cycles of chemo
and I did not tolerate the rituxan too well at all. I needed morphine in order to get this chemo. The good news is that after every comp ct scan my cancer kept getting smaller and smaller. Last week the scans said that there was no evidence of and progressive or regression of lymphoma at all. The doctor tells me that the lymphoma is gone. I will have to go on maintenance 4 times a year for two years. This has been an experience but I am happy to be alive and hope this cancer will stay away. My prayers are for all the new patients getting treatments in building c.

miss maggie
Posts: 929
Joined: Mar 2010

Dear Spirit,

I am so happy with your outcome with the clinical trial. Every once in awhile, there
is wonderful news from someone on this site. You will also notice, even though some are still
in treatment, they are doing quite well.

You say maintenance 4 times a year. Rituxan???? I did quite well with this drug.
Good luck, and prayers for continued good news.

Love Maggie

spirit64's picture
spirit64
Posts: 3
Joined: Oct 2010

I have completed 2 years of maintenance on

Rituxan and am in remission .   I am happy to have partipated in this clinical trial and am hopeful for the future.  I did have a few serious side effects from

Rituxan.

LeonardoCC
Posts: 3
Joined: Mar 2006

hello isabelle

my name is leonardo and i live in anchorage, alaska.

while i regret hearing of your diagnosis, i am interested in chatting with you because i too was diagnosed with smzl several years ago. i am 69 and just finished my last round of rituxan therapy. I started chemo 2 years ago and had four treatments each round, 4 rounds, 6 months apart.

i have been told i should be in remission for many years. surprisingly, i know very little about my current condition. my oncologist told me smzl is treatable, i am in rfemission and he will see me in six months. i will get a cbc blood test before my next visit.

perhaps i am in denial and keeping my fingers crossed. i have felt some continued fatigue and some muscle weakness, perhaps a bit of depression that may or may not be related to the smzl.

if you are interested, i would appreciate talking/chatting with you about our smzl diagnosis. my oncologist appears excellent, although he has not treated smzl before.

i wish you health and look forward to chatting with you.

best,

leonardo
anchorage, alaska

jesslk
Posts: 2
Joined: Dec 2010

Hi everyone,

Just wanted to jump in and say hi. I was diagnosed with SMZL in 2006, at the age of 31. It was found accidentally (unrelated bloodwork revealed hemolytic anemia and the doctor went looking) and I have not experienced any symptoms. I did have my spleen removed in 2007 for diagnostic purposes. No changes from that, except that the hemolysis went away (I am still slightly anemic, however).

As devastating as the diagnosis was initially, I do my best not to think about it too much. I work full-time and have a busy home life: two kids in college (my amazing step-daughters) and a 22 month-old at home. Needless to say, things are hectic!

I currently see my oncologist twice per year, with CT scans every other year. I'm due for one in two weeks, which is why I'm back to lurking on the web. It's really overwhelming to think of the lymphoma becoming active, and I do have a lot of fear about not being around for my kids. Especially with the baby, I just want to do everything I can to make sure she has her mother around while she grows up. Like I said, I'm positive most of the time, but every once and a while the anxiety gets the better of me!

Nice to "meet" all of you - good luck to us all!
Jess

SGS
Posts: 5
Joined: Apr 2011

I was just diagnosed with stage IV SMZL last month. Have my first doctor visit tomorrow since the diagnoses. I'm 55 and hoping I can get some positive news, but doubtful. Not sure what to expect. Just wondering if any of these are symptoms: fatigue, shortness of breath, nauseas with stomach ache. I have all of these. Hope to be able to commuicate with you all.

forme's picture
forme
Posts: 1158
Joined: Aug 2010

Hi SGS,
I have all your symptoms and a lot more too. The fatigue is the worst in my opinion. Pain can be dealt with but the fatigue and shortness of breath is so difficult. Hang in and let us know how things are going for you.
Peaceful healing
Lisha
PS you may want to start a new thread. This one is a little bit old. Do let us know how your dr visit went.

SGS
Posts: 5
Joined: Apr 2011

The first doctor visit went OK. She took a blood test and said it hasn't gotten any worse. So she is going on a wait and monitor treatment. She eventualy will let me go 2-3 months between vists as long as it doesn't get any worse. The fatigue is the pits makes it hard to do anything productive.

jesslk
Posts: 2
Joined: Dec 2010

Hi, I just saw your posts now - sorry for not responding sooner. just curious how they found the SMZL for you - was it because of the fatigue? I've always been asymptomatic, but my doctor just told me that my haptoglobin is down again, which he said could be the hemolytic anemia again. grrrrr - it's always something.

I hope things are going well for you. w&w is crazy, but it does get easier after a while.

jess

SGS
Posts: 5
Joined: Apr 2011

I went to the doctor because I was getting short of breath. Felt winded quite often. The doctor ran several tests and noted issues with my blood test. He referred me to an onocologist. This doctor took a bone marrow sample and did an ultrasound. She found my spleen was to big and my blood cell count was to low. She doesn't want to remove my spleen. Just due blood tests every couple of months.

So my doctor has me on a wait and watch rountine. Its the pits. I'm tired of being fatigued all the time. Wish there was something that could be done about the fatigue. I find that going to the gym helps some.

SGS

skinzvictory
Posts: 1
Joined: Jul 2011

Never thought I would find someone with the same scenario! I was diagnosed 13 years ago ( yes there is hope people!)when I was 31. Incedental finding on an abdminal ultrasound- the ol' spleen was 3 X normal. Back then we didn't have rituxin, so I had a splenectomy, ended up bleeing out with a severing of the splenic artery. Got through that , and was diagnosed with SMZL 3 days before Christmas. I had 2 kids ages 4 and 6 at the time. Didn't know what would happen.
The last 13 years have been filled with CT's every year, blood work, bone marrow biopsies, but No chemo, just a wait and watch sort of thing. I ahve worked full time starting 8 weeks after surgery and never looked back.. I tell you, it may sound odd, but it was the best thing that ever happened to me. It puts your life in total perspective, you grow are flexible and appreciate all the little things you never appreciated before. 4 years ago I found myself in a family way ( at 40)..lol! so nothing is impossible, life is what you make it. I think I have reached Maslow's hierarchy of self actualization. Its wonderful and freeing! Good luck to everyone going through this and you see there are lots of good stories to tell and supportive people out there. most of all hug and kiss and love.. and do what make s adifference in your and others lives. Carpe Diem and blessings: Steph

Marcus1983
Posts: 3
Joined: Jul 2013

Hello,

Was really interested to read all of the posts, especially Stephs and Jess' as they are so relevant to me. to see that there is some hope. I was diagnosed last month with SMZL at the ripe age of 30. Most of the stats on how its progresses are irrelevant to people of our age, so anecdotal evidence is great. I am currently trying to decide about having a spleenectomy or not. I only have a very slightly enlarged spleen so its a tough call.

I'm currently on watch and wait.

My question to everyone with it is how has it effected your life (Not medically, mentally) and what have you found good to deal with the shock and to stop thinking about it all the time?

To help myself I have started a blog. Feel free to have a look and make comments, as all imput is helpful!

http://spleniclymphoma.com/2013/07/10/the-purpose-of-this-blog/

 

Marcus

 

 

anliperez915's picture
anliperez915
Posts: 756
Joined: Sep 2011

Hi  Marcus,

I was dx with SMZL in July '11 stage IV with turmors in spleen, liver and bone marrow involvement. As of now though I'm in remission and just last thursday finished my Rituxan treatment. I had treatment once a week for four weeks every six months for two years. Not sure if you want to go this route but if you are getting the option of getting your spleen removed maybe that would be a better option for you! I've read some article where some people don't have any more problems after getting it removed but then there's the other not so good where people have had major problems from not having their spleen...I guess it's just a 50/50 chance.... hope you'll do just fine without it. Research it as much as you can....please let us know what you decide. Sending you lots of positive energy, take care!

Sincerely,

Liz

Marcus1983
Posts: 3
Joined: Jul 2013

Glad you are in remission, makes the treatment all worthwhile, although I know it can be very rough!

Havn't decided fully on the spleen, but think I might watch and wait and leave it for a bit. I'll keep you posted though on how I get on!

 

All the best,

Marcus

Catbite4
Posts: 1
Joined: Jul 2011

I have had Indolent Marginal Splenic Non Hodgkin's Lymphoma for six and one half years. Almost seven years ago I lost all my blood and almost collapsed. First they gave me blood transfusions and then Rituxan with high doses of Prednisone which gave me Diabetes. It went into remission for three years and then my spleen grew to five pounds. They removed it. Two more years of remission and then a year ago, I discovered a lump under my arm. My oncologist prescribed Rituxan again and the lump shrunk. My white blood cell count slowly rises, but my red blood cell and everything else is okay. My doctor prescribed Rituxan maintenance every three months. I had treatments in October, January, April and now tomorrow. Last time I saw the doctor he was concerned about the rising white blood cell count. He said that if it continues to rise, then chemo with Rituxan is the answer. Be strong and learn to live with the disease. I am 62 years old and feel pretty good. I refuse to let it get me.

bcbaxter
Posts: 1
Joined: Sep 2014

Hi there, i also have smzl!

CarsonKid
Posts: 1
Joined: Oct 2014

Spleen is 27 cm but I sure don't feel it. Dr said it's the largest he's ever seen (Cat Scan). I have no symptoms or pain and blood work is fine. I just felt it one day and thought I should check it out. Who knew? Dr advised against splendectomy due to its size. Start Rituximab next week. How are the side effects of Rituximab?

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