anyone fighting SMZL splenic marginal zone lymphoma

IsabelleY
IsabelleY Member Posts: 1
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
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Comments

  • dixiegirl
    dixiegirl Member Posts: 1,043
    Welcome
    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
    onlytoday Member Posts: 609 Member
    Marginal Zone Lymphoma
    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
    allmost60 Member Posts: 3,178
    Welcome Isabelle
    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
    NeilD Member Posts: 1
    SMZL
    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
  • JeannetteAnn
    JeannetteAnn Member Posts: 6
    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
    allmost60 Member Posts: 3,178

    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

    Grandparent issue
    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
    joanna50 Member Posts: 1
    SMZL
    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
    barry75 Member Posts: 1
    smzl
    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!
  • spirit64
    spirit64 Member Posts: 3
    SMZL
    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
    LeonardoCC Member Posts: 3
    smzl
    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
  • LeonardoCC
    LeonardoCC Member Posts: 3
    spirit64 said:

    SMZL
    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.

    smzl
    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
  • LeonardoCC
    LeonardoCC Member Posts: 3
    NeilD said:

    SMZL
    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

    smzl
    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
    mjadickinson Member Posts: 1
    NeilD said:

    SMZL
    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

    SMZL
    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
  • Karen55
    Karen55 Member Posts: 1
    spirit64 said:

    SMZL
    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.

    I was diagnosed w/SMZL 2 yrs ago--life expectancy???
    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
  • jesslk
    jesslk Member Posts: 2
    New member, not new to SMZL
    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
  • Betty_A1
    Betty_A1 Member Posts: 1
    barry75 said:

    smzl
    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!

    Need advice - Splenectomy or Rituxan for SMZL?
    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
  • SGS
    SGS Member Posts: 5
    jesslk said:

    New member, not new to SMZL
    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

    SMZL
    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
    forme Member Posts: 1,161
    SGS said:

    SMZL
    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.

    Yup
    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
    SGS Member Posts: 5
    forme said:

    Yup
    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.

    First Dr Visit
    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
    jesslk Member Posts: 2
    SGS said:

    First Dr Visit
    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.

    Hi, I just saw your posts
    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