anyone fighting SMZL splenic marginal zone lymphoma

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  • john1947
    john1947 Member Posts: 14
    #62
    illead said:

    Hi again

    I was rereading the string and realized I did not comment on you actually getting the MCL diagnosis,  We were actually in Mexico selling our condo and it was a fiasco, so my brain was kind of mushy Undecided.  The first chemo is always longer, it should get a little quicker.  The rituxan is the slow one.  Bill's platelets were 33 believe it or not.  All his counts were extremly low so he had procrit shots for about a week before his chemo.  I'm thinking you will be okay.  Because of Bill's low blood counts and extreme symptoms (which almost killed him), his chemo was bendamustine (treanda) which is fairly new and not as harsh, he didn't even lose his hair.  I think that now they feel that the stronger the chemo, the longer the remission.  Bill relapsed in two years and is now on the target drug Ibrutinib.  He has been on it since March '14.  So like I said, there is much hope out there.  We were at the oncologist yesterday and he said, if you relapse again there is more out there and more coming.  We truly are able to keep MCL on the back burner and go on with our lives.  You will too.  Also remember that Bill was not long for this world when he was diagnosed and you caught it early.

    My best,

    Becky

    Becky,
    Thank you.  I will

    Becky,

    Thank you.  I will keep you updated wiith my progress.  All in all, it has not been that bad, I got ahead of all the side effects and had medication on hand to deal with it including the bone pain, Tylenol #3 worked.  My daughter is a Oncology Nurse Practioner and was with me all last week.  My wife keeps me hydrated and feeds me Pinto Beans at least three times a week, she said they have all the Iron, Fiber, Protein etc needed for a balanced diet, according to her they are natures perfect food.

    John

  • illead
    illead Member Posts: 884 Member
    #63
    john1947 said:

    Becky,
    Thank you.  I will

    Becky,

    Thank you.  I will keep you updated wiith my progress.  All in all, it has not been that bad, I got ahead of all the side effects and had medication on hand to deal with it including the bone pain, Tylenol #3 worked.  My daughter is a Oncology Nurse Practioner and was with me all last week.  My wife keeps me hydrated and feeds me Pinto Beans at least three times a week, she said they have all the Iron, Fiber, Protein etc needed for a balanced diet, according to her they are natures perfect food.

    John

    Who knew

    and our favorite bean!  I don't suppose refrying them in bacon grease is such a good idea Wink,  I will switch to olive oil.  It sounds like you are in great hands.

    Hang in there,

    Becky

  • john1947
    john1947 Member Posts: 14
    #64
    illead said:

    Who knew

    and our favorite bean!  I don't suppose refrying them in bacon grease is such a good idea Wink,  I will switch to olive oil.  It sounds like you are in great hands.

    Hang in there,

    Becky

    Update

    I went to MD yesterday for blood draw and check up.  My WBC went for 50,000 to 13,000, RBC, HGB, HCT etc were all normal, Neut, Lymph and Mono,EO and BASO were all in normal range for the first time in 3 months.  Platelets were 58 but MD said they should go back up by next week.  I felt better yesterday and today almost normal. 

    John

  • dan6807
    dan6807 Member Posts: 1
    edited October 2016 #65
    Yes I am

    Hi, 

    Got diagnosed with SMZL in November 2015, Since then I have had 8 rounds of Rituxin and currently am up to half normal on the White Cell count. Mine came with Rheumatroid Arthritis but the tratment helped. Doctor is checking every 3 months now. My biggest problem is the bills still haven't been paid due to SSA and Florida Medicaid taking their time. I try to make it one day at a time and currently I don't feel bad but I know there is something when I try to work for any lenght of time as I start to feel weak. Already had four CT scans. Turned 62 last month guess it's time to retire.

  • yardent
    yardent Member Posts: 2
    edited November 2016 #66
    Catbite4 said:

    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.

    Indolent Marginal Non Hodgkin's Lymphoma

    Hello, I thank God for this site, I found it 2 weeks ago and this is my first time saying anything just soaking up helpful info. I was diagnosed with Indolent Marginal Non Hodgkin's Lymphoma in March 2013, My primary Doctor found my white blood count was 21 but no symptons, I have been going to a Cancer specialist since, and my WBC has since risen to 47 but still asymtomatic, I have been on the watch list since my first diagnosis, I feel that my WBC of 47 is extremely high, but I'm wondering is this high enough to start treatment? my Doctor recommends Rituxan. I am now 73. anyone with WBC over 50?

     

  • djwilzig
    djwilzig Member Posts: 2
    #67
    splenic marginal zone lymphoma

    I've been diagnosed and living with smzl since last August and on Imbruvica.  I'd appreciate speaking with others who have this rare ailment

  • djwilzig
    djwilzig Member Posts: 2
    edited May 2017 #68
    dan6807 said:

    Yes I am

    Hi, 

    Got diagnosed with SMZL in November 2015, Since then I have had 8 rounds of Rituxin and currently am up to half normal on the White Cell count. Mine came with Rheumatroid Arthritis but the tratment helped. Doctor is checking every 3 months now. My biggest problem is the bills still haven't been paid due to SSA and Florida Medicaid taking their time. I try to make it one day at a time and currently I don't feel bad but I know there is something when I try to work for any lenght of time as I start to feel weak. Already had four CT scans. Turned 62 last month guess it's time to retire.

    smzl

    I see a rheumatoligist who put me on meds for neuropathy. My daughter has RA and I was concerned about having it but for me the neuropathy appears  to be a side effec t  of 13 yrs of off and on Ri ttuxin therapy with loads of steroids etc for CLL. My side effect presents as gout or RA.

  • Concern
    Concern Member Posts: 2
    #69
    SMZL

    I also feel like a ticking time bomb because the surgeon told me I have had this cancer for 5 years and the lymphoma doctor said I would relapse and this cancer is incurable.  My spleen weighed 6 lbs and it was moving my organs out of place.  I want to know when this cancer comes back so I can live a good long life and enjoy my 2 sweet grandchildren.  Oh, by the way I'm 59 years young.

  • Trishness
    Trishness Member Posts: 1
    #70
    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

    Jess,

    Jess,

     

    I was just diagnosed with SMZL at 33. I have a 1 year old. Tell me how things are going for you?

  • lindary
    lindary Member Posts: 711 Member
    edited January 2018 #71
    Trishness said:

    Jess,

    Jess,

     

    I was just diagnosed with SMZL at 33. I have a 1 year old. Tell me how things are going for you?

    old thread

    This is an old thread. You might get a better response form the group if you start your own thread on yur condition and treatment.

  • Diana Stephenson
    Diana Stephenson Member Posts: 1
    edited March 2018 #72
    LeonardoCC said:

    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

    smzl

    Hi Leonardo,

    I was diagnosed a little over a year ago with SMZL. I was 66 and in pretty good health. Sure didn't think I would get cancer, of any kind. I was really tired all the time, had night sweats, thought it was a lack of hormones. It took a long time to get diagnosed but fortunately it was "LOW GRADE". So my treatment was 6 weeks once a week of Rituxan. My spleen softened after the first treatment! Wow.  So I went into remission quickly. I opted for the "maintenance" which is going once every two months. I'm not a sit around a wait kind of person. 

    This is a miracle drug! No side effects and works so well. From what I have read about others....it is something we can live with and it shouldn't shorten our lives.

    OK, I  am going with that.  I feel great now, work out, take lots of supplements.  It was so terrifying at first, I prayed for God to take away the fear so I could deal with it all. My prayers were answered. I have peace and am happy. It strengthened my faith and made me stronger and really appreciative of all of the wonderful things in life. I enjoy things more now and appreciate everything so much more. Every day I thank God for being alive and try to be a blessing to others. 

    Praying for all those who suffer from cancer, it's a horrible disease.

  • Louteck
    Louteck Member Posts: 3
    edited August 2018 #73
    SMZL

    Hi i'm Lou I too am battling SMZL, was diag. in 2015 but had symptoms for years prior but kinda ignored it.Spleen enlarged to 15,2 lbs 'was told it was a hernia' prior to the extreme enlargment. By the time I realized I better do something about this I was 3 bags of red blood cells low,couldn't lift my arms over my head,and my legs balloned I guess that's what happens when you put your work first.I opted for the spleenectomy it had so enlarged and where was all that toxin going if I used medicines to shrink it? Surgery went well lost a lot of blood but it appeared the surgical team took every precausion.Healed up pretty quick tryed to return to work that didn't workout to well took to much out of me.Besides I don't have a timeline on this thing, I'm told that it's nstage but that just means it shouldn't get worse and stay indolent for some time ?The time I have now belongs to my  family mainly  grandchildren .Also I too suffer from chronic cancer fatigue which seems to be a major complaint with cancer victims that I don't see being addressed considering it is such an importatnt factor concerning quality of life 

  • Louteck
    Louteck Member Posts: 3
    edited August 2018 #74
    mjadickinson said:

    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

    staging mzl

    Hi Im Lou I was diag. w stage 4 smzl had to remove spleen it had enlarged to 15.2lbs and now Im on watchfull wait, there seems to be no cure at this time but it is a very  treatable cancer. And staging I was told that stage 4 means that it maxed out and shouldnt get worse( i may be wrong on this). But it is a very slow progresing indolent cancer .Ive had this condition for a long time 9years give or take. Im 60 fairly decent shape I try to stay active,eat properly, and take vitamins/supplements. 

  • Louteck
    Louteck Member Posts: 3
    edited August 2018 #75
    Trishness said:

    Jess,

    Jess,

     

    I was just diagnosed with SMZL at 33. I have a 1 year old. Tell me how things are going for you?

    diag, w smzl

    Im lou Im 60 been battling smzl for some time close to 9 years I think, slpeen enlarged and removed @ 15.2 lbs I was kinda ignoring it also was told it was a rupture at the naval, by the time I went to the doc. I was 3 bags 0f red blood cells low and pretty bad off so much for putting work first. But in your case you caught it early your young although ther'se no cure it seems to be very managable there has been a lot of new cancer meds introduced in the last few years .there learning more about this condition daily, I think, hope, and pray that you will get through this hurdle and  you'll be fine especially for your one year older This smzl is very slow growing and indolent so we should be around  for a long time besides I have 3 grandchildren that I want to be around for.   Best of everything  God bless , Lou

  • Ginger J
    Ginger J Member Posts: 1
    #76
    Splenic Marginal Zone Lymphoma

    I was diagnosed in July 2018 and had 6 weeks of Rituxin infusions in a row, now every 8 weeks for two years. I stopped working in April 2018 when I was so exhausted and felt terrible with no idea what was wrong (I am now 62 and took early SS retirement). I know I am fortunate to have my spleen responding to the treatment, that I have a ten minute subq injection vs. IV infusion - but still feel poorly each and every day as well as exhausted.

    Any advice on when I may feel better? I am trying to eat healthier (more fruits and vegetables) as well as walk 2x per day for 20 minutes. I cannot stop thinking about the fact I have cancer and feel poorly. I do spend time sewing quilts for Project Linus and pillow cases for Ryans Cases for Smiles as well as read.

     

    Thanks for any thoughts and experience you may be willing to share.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #77
    Ginger J said:

    Splenic Marginal Zone Lymphoma

    I was diagnosed in July 2018 and had 6 weeks of Rituxin infusions in a row, now every 8 weeks for two years. I stopped working in April 2018 when I was so exhausted and felt terrible with no idea what was wrong (I am now 62 and took early SS retirement). I know I am fortunate to have my spleen responding to the treatment, that I have a ten minute subq injection vs. IV infusion - but still feel poorly each and every day as well as exhausted.

    Any advice on when I may feel better? I am trying to eat healthier (more fruits and vegetables) as well as walk 2x per day for 20 minutes. I cannot stop thinking about the fact I have cancer and feel poorly. I do spend time sewing quilts for Project Linus and pillow cases for Ryans Cases for Smiles as well as read.

     

    Thanks for any thoughts and experience you may be willing to share.

    Weakness

    Ginger, your diagnosis was less than a year ago.... often, that is much too little time to feel radically better.

    You are dong all of the 'laymans' advice' right stuff:  Healthy diet, lots of exercise, keeping your mind active with meaningful activities.  Your energy should return, but it could easily still take an additional year or more. Hopefully not that long.

    Check with your hematologist and see if it is safe and advisable for you to take a Super-B vitamin daily supplement.  They help me dramatically with energy.  Manufacturers claim it assists with mood also. B-12 is the main component in most "energy drinks," which I never use.  B-12 is water soluble, so should not build up in the metabolism.   "Super-B" is a marketing term, not a scientific one, so what is in any given manufacturer's Super-B may vary.  Usually, it is a lot of B-12, some B-6, B-1, B-3 vitamin C, and folic acid.  Be aware that Label claims on supplements are usually NOT FDA certified.

    Do ask the doctor first, since cancer patients should take nothing without clearing it with the doctor,

    max

  • Marsha1946
    Marsha1946 Member Posts: 1
    edited April 2021 #78
    Third time treating my SMZL

    Has anyone had treatment with ibrutinib? First time treated with rituximab in 2013

    remission 5 years 3 months 2019 again treated with rituximab.  2021, now living 

    in Florida my cancer has returned have been to Moffitt, and must make a decesion by May 4th 

  • florryy_08
    florryy_08 Member Posts: 1
    edited July 2021 #79
    Hello everyone, I’m writing

    Hello everyone, I’m writing here because of my dad who is in mid 50s.

    A year ago he was diagnosed with SMZL plus AIHA and antiphospholipid syndrome. At first he was on medrol but since it didn't work well the doctor decided it was time for bendamustine and rituximab (6 cycles of both + 2 rituximab only). During the treatment spleen almost completely regressed, LDH levels were normal again, haemoglobin levels went up, all those coagulation parameters were back to normal.

    Two weeks ago dad finished the treatment and according to last blood work, LDH levels are above normal again...The doctor told him to come back with PET CT  results and as far as we know he won’t get that “2 years of rituximab maintainance” that, as I have seen on various forums, people almost always get.

    I’m writing here because I’m really worried (especially because of AIHA and antiphospholipid syndrome) and there is no one in real life we can talk to. Basically in every article that I have read, high LDH and low haemoglobin are everything but a good sign for the future. Plus my dad has AIHA and antiphospholipid syndrome. What about Rituximab and 2 years of maintainance, should we try to get those 2 years or leave it as it is for now? 

    If someone has read this, thank you so much. Also, if someone wants to get in touch via private messages, I'm here.

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