anyone fighting SMZL splenic marginal zone lymphoma

24

Comments

  • Catbite4
    Catbite4 Member Posts: 1
    #22
    I have Indolent Marginal Splenic Non Hodgkin's Lymphoma
    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.
  • SGS
    SGS Member Posts: 5
    #23
    jesslk said:

    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

    Initial Diagnosis
    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
  • spirit64
    spirit64 Member Posts: 3
    #24
    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 my update
    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
    miss maggie Member Posts: 929
    #25
    spirit64 said:

    SMZL my update
    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.

    Hi
    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
  • skinzvictory
    skinzvictory Member Posts: 1
    #26
    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

    Hello Jess
    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
    Marcus1983 Member Posts: 3
    #27
    skinzvictory said:

    Hello Jess
    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

    Hello All (Steph and Jess as well)

    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
    anliperez915 Member Posts: 770
    #28
    Marcus1983 said:

    Hello All (Steph and Jess as well)

    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

     

     

    Hi Marcus

    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
    Marcus1983 Member Posts: 3
    #29
    anliperez915 said:

    Hi Marcus

    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

    Good news on the remission

    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

  • spirit64
    spirit64 Member Posts: 3
    #30
    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.

    update on splenic marginal zone 9/2013

    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.

  • bcbaxter
    bcbaxter Member Posts: 1
    #31
    smzl

    Hi there, i also have smzl!

  • CarsonKid
    CarsonKid Member Posts: 1
    edited November 2016 #32
    Splendic MZL
    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?
  • Fayzee
    Fayzee Member Posts: 1
    #33
    SMZL

    I was diagnosed with SMZL in March, 2013 after a bone marrow biopsy.  My spleen was already enlarged and I eventually had it removed when it was 20 cm in September, 2013 (the 11th!). Chemo wasn't offered and I was okay having surgery.  Had a few complications, but 4 months later I was fine, and have been ever since.  Haven't even had 'sniffles', so I guess my immune system hasn't been comprimised.  I'm an optimist and believe that I have at least 5 years (or 10) maybe until I will have a re-occurence.  At 72 years of age, I'm good with that.  I feel so fortunate that I reached the age of 70 in excellent health!  

  • zara
    zara Member Posts: 1
    #34
    Fayzee said:

    SMZL

    I was diagnosed with SMZL in March, 2013 after a bone marrow biopsy.  My spleen was already enlarged and I eventually had it removed when it was 20 cm in September, 2013 (the 11th!). Chemo wasn't offered and I was okay having surgery.  Had a few complications, but 4 months later I was fine, and have been ever since.  Haven't even had 'sniffles', so I guess my immune system hasn't been comprimised.  I'm an optimist and believe that I have at least 5 years (or 10) maybe until I will have a re-occurence.  At 72 years of age, I'm good with that.  I feel so fortunate that I reached the age of 70 in excellent health!  

    splenic marginal zone lymphoma

    Hi Fayzee

    I am sorry to hear about the SMZL. However am very pleased to know you are doing well.

    My father has been diagnosed with the same thing. He has been told that he will be treated with Bendamustine and Rituximab

    After reading your post im wondering why they didnt offer to remove his spleen instead. Also do you know of anyone that has had this treatment they have offered to my dad and survived? we'ew very concerned about the side effects.

    My father is 72 otherwise fit and healthy. We are in the UK.

     

    I look forward to hearing from you.

  • Jack Y
    Jack Y Member Posts: 6
    #35
    Update for Isabelle Y

    It is now April 9, 2015.  I am Isabelle Y's husband.  SHe was diagnosed over four years ago of Splenic Marginal Zone Lymphoma.  I am sitting in her hospital room watching her sleeping. Her mind is a complete fog most of the time and her short term memory is non existant.  Except for a few days she has been in the hospital since Christmas.  Her body temperature will drop and the blood pressure goes up.  Other times her blood pressure drops drastically.  Just about every test has been run.  It is beleived now it may be an auto immune issue but the doctors and staff have said they have never seen anyone with the issues Isabelle has acquired.  I am looking for ideas, suggestions, alternative hospitals or whatever to save my lovely wife.  By the way, in Mid December she had a treatment retuxin and Bendamustine.  Was it due to the Bendamustine?  Who knows?  Any suggestions of reason for the above symptoms or treatment locations please let me know.

  • anliperez915
    anliperez915 Member Posts: 770
    #36
    Jack Y said:

    Update for Isabelle Y

    It is now April 9, 2015.  I am Isabelle Y's husband.  SHe was diagnosed over four years ago of Splenic Marginal Zone Lymphoma.  I am sitting in her hospital room watching her sleeping. Her mind is a complete fog most of the time and her short term memory is non existant.  Except for a few days she has been in the hospital since Christmas.  Her body temperature will drop and the blood pressure goes up.  Other times her blood pressure drops drastically.  Just about every test has been run.  It is beleived now it may be an auto immune issue but the doctors and staff have said they have never seen anyone with the issues Isabelle has acquired.  I am looking for ideas, suggestions, alternative hospitals or whatever to save my lovely wife.  By the way, in Mid December she had a treatment retuxin and Bendamustine.  Was it due to the Bendamustine?  Who knows?  Any suggestions of reason for the above symptoms or treatment locations please let me know.

    I'm really sorry that your

    I'm really sorry that your wife is ill. I had the same subtype as hers, was she still in treatment? Hoping the doctors find the problem soon! Sorry I don't have any answers for you but maybe someone in the group can help you more. I will be keeping you both in my prayers! 

    Sincerely,

    Liz

  • Jack Y
    Jack Y Member Posts: 6
    #37
    anliperez915 said:

    I'm really sorry that your

    I'm really sorry that your wife is ill. I had the same subtype as hers, was she still in treatment? Hoping the doctors find the problem soon! Sorry I don't have any answers for you but maybe someone in the group can help you more. I will be keeping you both in my prayers! 

    Sincerely,

    Liz

    Thank you for the prayers

    Isabelle needs all the prayers we can get for her.  I think she is very, very slowly improving.  I worry about that possible one issue that might arrive that they can't treat.  Also I know the medicare in hospital insurance is goiing to run out.  They only give you 90 days.  I have other insurance but I really don't know how it all works so I need to chekc that out.  It really frightens me to thin they might sent her to hospice or something.  I know I can't but if only I could have known ahead of this what that Bendamustine was going to do to her.   I hope someone might have an answer.  I need her home with me so bad.

     

  • Rocquie
    Rocquie Member Posts: 869 Member
    #38
    Jack Y said:

    Thank you for the prayers

    Isabelle needs all the prayers we can get for her.  I think she is very, very slowly improving.  I worry about that possible one issue that might arrive that they can't treat.  Also I know the medicare in hospital insurance is goiing to run out.  They only give you 90 days.  I have other insurance but I really don't know how it all works so I need to chekc that out.  It really frightens me to thin they might sent her to hospice or something.  I know I can't but if only I could have known ahead of this what that Bendamustine was going to do to her.   I hope someone might have an answer.  I need her home with me so bad.

     

    Jack

    I am glad your Isabelle seems to be improving. 

    I feel pretty certain that if she still needs care after her Medicare insurance is exhausted, there will be other options than hospice. Ask to speak to your hospital's oncology social worker. There are many levels of care available outside a traditional hospital setting. 

    I pray for you both.

    Love,

    Rocquie

     

  • Jack Y
    Jack Y Member Posts: 6
    #39
    Rocquie said:

    Jack

    I am glad your Isabelle seems to be improving. 

    I feel pretty certain that if she still needs care after her Medicare insurance is exhausted, there will be other options than hospice. Ask to speak to your hospital's oncology social worker. There are many levels of care available outside a traditional hospital setting. 

    I pray for you both.

    Love,

    Rocquie

     

    An update on Isabelle

    She is now back in the hospital.  Thankfully an appointment was scheduled when she was transferred to a rehab center.  Her oncologist took one look at her and her blood test and said he was admitting her to ICU.  I thank God we had the appointment.  Unknown to me because I was not that familiar with blood test numbers and also had not asked to see them at the rehab center, over the two weeks at the center her sodium levels had rose dangerously high, her hemoglobin was very low, she had diabetes insipious and her port was infected.  She has now had her port removed and the infection treated, her sodium level is slowly being lowered and all issues are being addressed.  I know I would have lost her within two weeks if not for that appointment.  Obviously the supervising part time doctor was not reading the blood test results and addressing them and the nursing staff was also not checking on them.  It was addressed with the administrator over the phone but a face to face is being planned.  I am of course very upset about what occurred with Isabelle but I am also thinking about the other residents in the facility that are surely not being treated as needed.  

  • lindary
    lindary Member Posts: 711 Member
    #40
    Jack Y said:

    An update on Isabelle

    She is now back in the hospital.  Thankfully an appointment was scheduled when she was transferred to a rehab center.  Her oncologist took one look at her and her blood test and said he was admitting her to ICU.  I thank God we had the appointment.  Unknown to me because I was not that familiar with blood test numbers and also had not asked to see them at the rehab center, over the two weeks at the center her sodium levels had rose dangerously high, her hemoglobin was very low, she had diabetes insipious and her port was infected.  She has now had her port removed and the infection treated, her sodium level is slowly being lowered and all issues are being addressed.  I know I would have lost her within two weeks if not for that appointment.  Obviously the supervising part time doctor was not reading the blood test results and addressing them and the nursing staff was also not checking on them.  It was addressed with the administrator over the phone but a face to face is being planned.  I am of course very upset about what occurred with Isabelle but I am also thinking about the other residents in the facility that are surely not being treated as needed.  

    Have not had good experience with rehab/nursing home places. Care seems to be mechanical, almost hospice type. If ou expect your family member to get hospital type care, don't count on it. You need to be you famly members advocate. Quesstion everything and often. Daily if you can. If you keep getting the same answer, go up a level. I wish Isabelle good luck in recoverying.

  • Jack Y
    Jack Y Member Posts: 6
    #41
    Thank you all.

    I sure agree with you Lindary.  I have learned my lesson and will sure do what you recommended. 

Discussion Boards