anyone fighting SMZL splenic marginal zone lymphoma

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.

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 said:

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

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!

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

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

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

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 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 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