late stage NHL ?

My husband was diagnoised in 2006 with stage 4 NHL. Chronic lymphatic leukemia/small b-cell lymhpatic lymphoma. Treated with chemo 2006-2007 and went without treatments til March 2010 to present. I need to know if anyone has experienced confusion, being disoriented, child like manners, stroke like symptoms or anything like that in late stage. The nurse told me that this may be disease progression. I am scared to leave him alone sometimes because he heads in the wrong directions, can't remember where he's going, or for what, friends found him standing in the middle of the road, he heads out of stores and to the wrong car. If this is disease progression it would be nice to know, because we are getting frustrated at them trying to find the cause. He has had CT scans and MRI's to determine if he's had a stroke and they are negative. Can it be caused from chemo drugs, is it progression, or has the disease transformed?
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Comments

  • Michele23
    Michele23 Member Posts: 168
    treatment and confusion
    Hi Liltazat,I was diagnosied in 1995 Low grade Follicular stage 3.Have done "alot" of treatment over the years.I will agree it causes confusion and I am guilty of many of the things you mention,but never stood in the street.Its a matter a fact my friend has breast cancer and is having the same short term memory problems.What was he treated with?R-Chop or something else.If you don't mind me asking how old is your husband?It's never a bad thing to insist on tests to be sure something new isn't happening.Just last year had my onc do an MRI of my brain as I was having along with all else, dizziness no one could explain.I found playing scrabble and memory games helps work the mind.Good luck take care,Michele
  • COBRA666
    COBRA666 Member Posts: 2,401
    It does not surprise me as
    It does not surprise me as to what the later term effects of the chemo drugs could be. We are all different and we all probably have or will have some effects. Most Drs. will not admit to it.The stress we go thru certainly have no good results either. John(FNHL-1-4A-5/10)
  • allmost60
    allmost60 Member Posts: 3,178
    COBRA666 said:

    It does not surprise me as
    It does not surprise me as to what the later term effects of the chemo drugs could be. We are all different and we all probably have or will have some effects. Most Drs. will not admit to it.The stress we go thru certainly have no good results either. John(FNHL-1-4A-5/10)

    Finding answers...
    Hi,
    I agree with Michele in seeing about getting more testing done. There may be other issues going on that don't even relate to the chemo. With that being said, we DO know that chemo does have some long term effects and each one of us is different in what we may or may not experience. I do have days where I'm foggy headed and don't focus as well, but so far I've not done anything too alarming. Until you get more answers I'd make sure your husband has someone around to keep a close eye on his behavior. Please keep us up-dated as you find out more information on whats causing some of his actions. My prayers and positive thoughts will be with you. Best wishes to you both...Love,Sue (FNHL-2-3A-6/10)
  • liltazcat
    liltazcat Member Posts: 10
    allmost60 said:

    Finding answers...
    Hi,
    I agree with Michele in seeing about getting more testing done. There may be other issues going on that don't even relate to the chemo. With that being said, we DO know that chemo does have some long term effects and each one of us is different in what we may or may not experience. I do have days where I'm foggy headed and don't focus as well, but so far I've not done anything too alarming. Until you get more answers I'd make sure your husband has someone around to keep a close eye on his behavior. Please keep us up-dated as you find out more information on whats causing some of his actions. My prayers and positive thoughts will be with you. Best wishes to you both...Love,Sue (FNHL-2-3A-6/10)

    still confused
    Tests included MRI which was negative, Spinal tap, showing no viral infection, EEG showing slowed brain wave activity, labs are good. All these tests done last week and they are redoing again this week to compare. He isn't doing very well. Spent 5 days last week in the hospital, they ran all the tests and found nothing. Sunday he was discharged, and his oncologist readmitted him on Tuesday. Sunday evening we went out for dinner with children, he walked, talked, and appeared a little disoriented. Monday radiation, then in bed all afternoon and evening. Tuesday again very confused, got radiation, then oncology did admission. After admission very restless, couldn't lay still. Up and down, moving from one position to another about every 40-60seconds. He would stand up, sit down, lay down, stand up again. On and on for hours and he didn't sleep all night. Today Oh My! I arrived at hospital, and he wasn't speaking much, eyes glossy, laying in bed still restless, alot of body movement. Together 3 of us tried to stand him on his feet to stretch the legs, and he could not stand. What the heck happened? Everyday symptoms are worse and no answers. He is 53 yrs old, and unable to think straight, follow simple commands, respond to questions. Oncology says that if all test remain negative then they would classify this as paraneoplatic syndrome. That doesn't sound very good.
  • allmost60
    allmost60 Member Posts: 3,178
    liltazcat said:

    still confused
    Tests included MRI which was negative, Spinal tap, showing no viral infection, EEG showing slowed brain wave activity, labs are good. All these tests done last week and they are redoing again this week to compare. He isn't doing very well. Spent 5 days last week in the hospital, they ran all the tests and found nothing. Sunday he was discharged, and his oncologist readmitted him on Tuesday. Sunday evening we went out for dinner with children, he walked, talked, and appeared a little disoriented. Monday radiation, then in bed all afternoon and evening. Tuesday again very confused, got radiation, then oncology did admission. After admission very restless, couldn't lay still. Up and down, moving from one position to another about every 40-60seconds. He would stand up, sit down, lay down, stand up again. On and on for hours and he didn't sleep all night. Today Oh My! I arrived at hospital, and he wasn't speaking much, eyes glossy, laying in bed still restless, alot of body movement. Together 3 of us tried to stand him on his feet to stretch the legs, and he could not stand. What the heck happened? Everyday symptoms are worse and no answers. He is 53 yrs old, and unable to think straight, follow simple commands, respond to questions. Oncology says that if all test remain negative then they would classify this as paraneoplatic syndrome. That doesn't sound very good.

    So sorry...
    Hi,
    From what I've been reading on this syndrome, the symptoms your husband is experiencing appear to coincide. It sounds like the oncology team you are working with will soon find out for sure if this is paraneoplatic syndrome and will figure out what the next step in treatment will be. From what I read, this syndrome comes on quickly which fits with what you have described has been going on with your dear husband. My prayers will be with you and I hope you will soon have all of your questions answered. Please come back and let us know how things are going and know we are here for you.
    God bless you...Sue (FNHL-2-3A-6/10)
  • yesyes2
    yesyes2 Member Posts: 591
    allmost60 said:

    So sorry...
    Hi,
    From what I've been reading on this syndrome, the symptoms your husband is experiencing appear to coincide. It sounds like the oncology team you are working with will soon find out for sure if this is paraneoplatic syndrome and will figure out what the next step in treatment will be. From what I read, this syndrome comes on quickly which fits with what you have described has been going on with your dear husband. My prayers will be with you and I hope you will soon have all of your questions answered. Please come back and let us know how things are going and know we are here for you.
    God bless you...Sue (FNHL-2-3A-6/10)

    Confusion
    Hi,

    I'm so very sorry for what your husband and you are going through. It must be so frustrating for you. I really can't offer you any additional insite but I do give you my prayers and support. It does sound like your medical team is now on the right track and I pray they can offer him some assistance.

    Blessings to you and your family,
    Leslie
  • liltazcat
    liltazcat Member Posts: 10
    allmost60 said:

    So sorry...
    Hi,
    From what I've been reading on this syndrome, the symptoms your husband is experiencing appear to coincide. It sounds like the oncology team you are working with will soon find out for sure if this is paraneoplatic syndrome and will figure out what the next step in treatment will be. From what I read, this syndrome comes on quickly which fits with what you have described has been going on with your dear husband. My prayers will be with you and I hope you will soon have all of your questions answered. Please come back and let us know how things are going and know we are here for you.
    God bless you...Sue (FNHL-2-3A-6/10)

    All the test results are back. Unfortunately the spinal tap now shows that he has a rare viral infection in the cerebral spinal fluid. JC virus which becomes PML. This is not good,is caused from some of the chemo drugs he has been on (Rituxan and Arzerra) There is no treatment for PML and all the symptoms and tests conclude that this is the diagnosis. He is getting a little better, for the time being anyway. The doctors say he'll have ups and downs and that he may fight it off for awhile. The long term prognosis however is not good. We pray for things to improve and his quality of life to be the best it can be.
    Thank you for all the support.
  • miss maggie
    miss maggie Member Posts: 929
    liltazcat said:

    All the test results are back. Unfortunately the spinal tap now shows that he has a rare viral infection in the cerebral spinal fluid. JC virus which becomes PML. This is not good,is caused from some of the chemo drugs he has been on (Rituxan and Arzerra) There is no treatment for PML and all the symptoms and tests conclude that this is the diagnosis. He is getting a little better, for the time being anyway. The doctors say he'll have ups and downs and that he may fight it off for awhile. The long term prognosis however is not good. We pray for things to improve and his quality of life to be the best it can be.
    Thank you for all the support.

    Your loving spouse
    I am stunned by your post. I am so very sorry for your husband's prognosis.

    Please feel free to post often when you need our support. I lost my husband, my love, in May 2004.
    He lived 2 years with pancreatic cancer. He had a good quality of life for almost all of the 2 years. I understand.

    If you feel like it, place explain what the rare viral infection in the cerebral spinal fluid, JC VIRUS? Also what is PML?

    I am hear for you, as all of us are. Love Maggie
  • yesyes2
    yesyes2 Member Posts: 591

    Your loving spouse
    I am stunned by your post. I am so very sorry for your husband's prognosis.

    Please feel free to post often when you need our support. I lost my husband, my love, in May 2004.
    He lived 2 years with pancreatic cancer. He had a good quality of life for almost all of the 2 years. I understand.

    If you feel like it, place explain what the rare viral infection in the cerebral spinal fluid, JC VIRUS? Also what is PML?

    I am hear for you, as all of us are. Love Maggie

    Diagnosis
    I am so very sorry to hear of your husbands diagnosis. My thoughts and prayers are with you and your husband on your journey. Please come post whenever you wish as we will be here for you.

    With my prayers and lovinf thoughts,
    Leslie
  • yesyes2
    yesyes2 Member Posts: 591
    yesyes2 said:

    Diagnosis
    I am so very sorry to hear of your husbands diagnosis. My thoughts and prayers are with you and your husband on your journey. Please come post whenever you wish as we will be here for you.

    With my prayers and lovinf thoughts,
    Leslie

    PML
    Hi Maggie,

    PML stands for Progressive Multifocal Leukoencephalopathy and can be associated with having ever had Rituxan treatments or a few other chemo drugs. It is a virus which attacks and distroys the white matter of the brain and is associated with having both the JC virus and a suppressed immun system. The prognosis is very grim. Both my Oncologist and my Rheumatologist made sure to warn me when about PML when I started Rituxan treatments. It is also a black box warning on the prescription insert. Scares me everytime I get an infusion. Really scary and my heart breaks for Liltazcat and her husband.

    You Maggie are a real sweet heart, very kind and loving and I so appreciate you.

    Blessings to you,
    Leslie
  • allmost60
    allmost60 Member Posts: 3,178
    yesyes2 said:

    PML
    Hi Maggie,

    PML stands for Progressive Multifocal Leukoencephalopathy and can be associated with having ever had Rituxan treatments or a few other chemo drugs. It is a virus which attacks and distroys the white matter of the brain and is associated with having both the JC virus and a suppressed immun system. The prognosis is very grim. Both my Oncologist and my Rheumatologist made sure to warn me when about PML when I started Rituxan treatments. It is also a black box warning on the prescription insert. Scares me everytime I get an infusion. Really scary and my heart breaks for Liltazcat and her husband.

    You Maggie are a real sweet heart, very kind and loving and I so appreciate you.

    Blessings to you,
    Leslie

    Ugh!
    Well...my heart truely aches for you Liltazcat, and your dear husband. Very sad indeed. I hope you will come back to the group for love and support..we will always be here for you.

    Leslie...OMG..you scared the beejeezes out of me after reading the information about the Rituxan. I have not read anything about this PML/JC virus, and I "thought" I had done some healthy intense researching...appears I did not. I appreciate so much your wealth of knowledge on this damn disease and the treatments being used. Now that I'm over being scared,and have changed my underware, I will discuss in more detail with my onc on questions I have with Rituxan. Two years is a long time to have to take this drug, so it's best to know EVERYTHING possible about it. I am blown away...but thanks for the information. Much love...Sue (FNHL-2-3A-6/10)..with much to still learn!!!!
  • COBRA666
    COBRA666 Member Posts: 2,401
    yesyes2 said:

    PML
    Hi Maggie,

    PML stands for Progressive Multifocal Leukoencephalopathy and can be associated with having ever had Rituxan treatments or a few other chemo drugs. It is a virus which attacks and distroys the white matter of the brain and is associated with having both the JC virus and a suppressed immun system. The prognosis is very grim. Both my Oncologist and my Rheumatologist made sure to warn me when about PML when I started Rituxan treatments. It is also a black box warning on the prescription insert. Scares me everytime I get an infusion. Really scary and my heart breaks for Liltazcat and her husband.

    You Maggie are a real sweet heart, very kind and loving and I so appreciate you.

    Blessings to you,
    Leslie

    Yikes!!!!
    Leslie,
    No jokes today. Instead I am burning up my Google Search checking those Rituxin side effects. I know everything right down to an aspirin has side effects, but this JC virus really got my attention. Like Sue, I now have to throw my underwear in the washer. John(FNHL-1-4A-5/10)
  • yesyes2
    yesyes2 Member Posts: 591
    COBRA666 said:

    Yikes!!!!
    Leslie,
    No jokes today. Instead I am burning up my Google Search checking those Rituxin side effects. I know everything right down to an aspirin has side effects, but this JC virus really got my attention. Like Sue, I now have to throw my underwear in the washer. John(FNHL-1-4A-5/10)

    So Sorry
    Hi John and Sue,

    Well now that you have changed your underwear, I am sorry to scare you and I really didn't want to upset anyone but it is there. Keep in mind that it is very rare but also very difficult to diagnois so believed to be under reported. We had another people on here diagnosed I believe. If you want information just go to the Rituxan home page and check side effects of Rituxan. Actually the heart problems scare me more than the PML. I

    Sue, I have had a ton of Rituxan, original 4 sessions, maintenance for 18 months, eight rounds with my RCHOP and 2 sessions every 6 months for my RA. Even Genentec, the maker of Rituxan, can't say what effect it will have on me. But this drug is the only thing I can use for my RA so I take the chance everytime I get an infusion. I think I dived off the high board long ago, and I can't swim, so go figure.

    Love you guys,
    Leslie
  • yesyes2
    yesyes2 Member Posts: 591
    yesyes2 said:

    So Sorry
    Hi John and Sue,

    Well now that you have changed your underwear, I am sorry to scare you and I really didn't want to upset anyone but it is there. Keep in mind that it is very rare but also very difficult to diagnois so believed to be under reported. We had another people on here diagnosed I believe. If you want information just go to the Rituxan home page and check side effects of Rituxan. Actually the heart problems scare me more than the PML. I

    Sue, I have had a ton of Rituxan, original 4 sessions, maintenance for 18 months, eight rounds with my RCHOP and 2 sessions every 6 months for my RA. Even Genentec, the maker of Rituxan, can't say what effect it will have on me. But this drug is the only thing I can use for my RA so I take the chance everytime I get an infusion. I think I dived off the high board long ago, and I can't swim, so go figure.

    Love you guys,
    Leslie

    Information
    Sue,

    I keep up on Lymphoma information, drugs, trials, etc as a form of self preservation. I'm not one who easily trusts anyone, least of all doctors so I have to verify everything myself. It's very frustration for my doctors to work with me as I question everything.

    You impress me with your knowledge and research. And you have educated me on several things which I didn't know and I really appreciate that.

    Love,
    Leslie
  • allmost60
    allmost60 Member Posts: 3,178
    yesyes2 said:

    Information
    Sue,

    I keep up on Lymphoma information, drugs, trials, etc as a form of self preservation. I'm not one who easily trusts anyone, least of all doctors so I have to verify everything myself. It's very frustration for my doctors to work with me as I question everything.

    You impress me with your knowledge and research. And you have educated me on several things which I didn't know and I really appreciate that.

    Love,
    Leslie

    Thanks Leslie
    Hi Leslie,
    I also question things and spend alot of time seeking answers. Some people are ok with not knowing all of the details....not me. I'm like you with the Rituxan...more concerned about what I've read concerning heart damage after long term use. Time will tell I suppose, and right now the docs sure do like the Rituxan. Not much about any chemo that makes me say "oh yeah..this one sounds good"...ya know? We do what we have to do to win the fight...but we don't have to like it, and we certainly have the right to ask questions along the way. Hope you have a good weekend. Funeral and baby shower for me...(same day).
    Love...Sue (FNHL-2-3A-6/10)
  • Michele23
    Michele23 Member Posts: 168
    allmost60 said:

    Thanks Leslie
    Hi Leslie,
    I also question things and spend alot of time seeking answers. Some people are ok with not knowing all of the details....not me. I'm like you with the Rituxan...more concerned about what I've read concerning heart damage after long term use. Time will tell I suppose, and right now the docs sure do like the Rituxan. Not much about any chemo that makes me say "oh yeah..this one sounds good"...ya know? We do what we have to do to win the fight...but we don't have to like it, and we certainly have the right to ask questions along the way. Hope you have a good weekend. Funeral and baby shower for me...(same day).
    Love...Sue (FNHL-2-3A-6/10)

    News to me too...
    Oh my,never ever heard of this and I,ve been given Rituxan since the yr.2000!I agree with you sue and others.This is just not right.No one ever warned me.Sucks big time if ya ask me.Hugs to all,Michele
  • miss maggie
    miss maggie Member Posts: 929
    yesyes2 said:

    PML
    Hi Maggie,

    PML stands for Progressive Multifocal Leukoencephalopathy and can be associated with having ever had Rituxan treatments or a few other chemo drugs. It is a virus which attacks and distroys the white matter of the brain and is associated with having both the JC virus and a suppressed immun system. The prognosis is very grim. Both my Oncologist and my Rheumatologist made sure to warn me when about PML when I started Rituxan treatments. It is also a black box warning on the prescription insert. Scares me everytime I get an infusion. Really scary and my heart breaks for Liltazcat and her husband.

    You Maggie are a real sweet heart, very kind and loving and I so appreciate you.

    Blessings to you,
    Leslie

    Leslie Thank you
    Hello Leslie,

    Thank you for your kind words. I feel the same about you and all the others of this site.

    I had no idea of the dangers of Rituxan. My oncologist never told me of the dangers of Rituxan. You were fortunate enough to get a warning before starting treatment.

    I thought Rituxan was the least drug to cause any problems. I am stunned. You are so smart. Thank you for the heads up.

    Love Maggie Let the angels watch over all of us.
  • yesyes2
    yesyes2 Member Posts: 591

    Leslie Thank you
    Hello Leslie,

    Thank you for your kind words. I feel the same about you and all the others of this site.

    I had no idea of the dangers of Rituxan. My oncologist never told me of the dangers of Rituxan. You were fortunate enough to get a warning before starting treatment.

    I thought Rituxan was the least drug to cause any problems. I am stunned. You are so smart. Thank you for the heads up.

    Love Maggie Let the angels watch over all of us.

    And Back at You
    And thank you for your kind words too. Actually Rituxan is considered a drug that causes few of the usual problems and isn't as harsh on the system as the chemo drugs.

    Have a blessed day.
    Leslie
  • liltazcat
    liltazcat Member Posts: 10
    liltazcat said:

    All the test results are back. Unfortunately the spinal tap now shows that he has a rare viral infection in the cerebral spinal fluid. JC virus which becomes PML. This is not good,is caused from some of the chemo drugs he has been on (Rituxan and Arzerra) There is no treatment for PML and all the symptoms and tests conclude that this is the diagnosis. He is getting a little better, for the time being anyway. The doctors say he'll have ups and downs and that he may fight it off for awhile. The long term prognosis however is not good. We pray for things to improve and his quality of life to be the best it can be.
    Thank you for all the support.

    few set backs
    This virus is not good. They say it is JC virus which lies dormant in everyone since childhood. When the immune system becomes compromised the JC virus can become active and develop into a viral infection called PML.
    He had a couple of better days, where he seemed to be improving. Then Thursday symptoms of a mini stroke (couldn't use right hand or leg) CT scan normal. Then on Friday the seizure came. It was a bad one, took them 45 min to get it stopped. He was then in critical shape throughout the remainder of the day. Saturday morning doing alright, but the nurses having trouble drawing labs, and flushing his IV site was painful. So the IV team felt he would benefit from a pic line. So they put the pic line in and right after he had another seizure. Again had a rough day, and today he seemed better. Today he was calm, not restless at all, alert at times and recognized people. He is confused alot of the time, and short term memory is not there. I asked the doctor what we should expect, and again its not good. Told me that with any one of these seizures he may not come out of it. Or he could have a massive stroke and pass on. Can't tell me if it could be days, weeks or months. Still in hospital now 3 weeks. Say from here it could be the hospice inpatient unit for a couple of weeks. HOME???humm how do I go to work or anywhere? Who will stay with him and help him with a urnial or walk him to the bathroom and help him with his pants, help him to eat, cut up his food, put his shoes on him and continue to assist him like a small child? And then ask that person to watch for signs of a seizure and if he starts having a seizure roll him onto his left side, and call 911, then hold your breath and hope they get there before he chokes to death on the froath and foam in his mouth. And if that isn't enough, throw in that he could also have a massive stroke while I'm gone too, so good luck see ya when I get back....Humm who will stay with him while I work, go to the store, run to the bank, pharmacy or post office....NO ONE.
    Just impossible to think about where we go from here. The drugs that were supposed to make him better, are now costing him his life. He is confused and unaware even though he was told, he quickly forgot, and maybe that is best. He wouldn't want to realize how he is today. My man, the love of my life slipping away everyday. So sad, I keep the faith and remain strong, but inside I am crumbling. I don't want him to go...
  • Michele23
    Michele23 Member Posts: 168
    liltazcat said:

    few set backs
    This virus is not good. They say it is JC virus which lies dormant in everyone since childhood. When the immune system becomes compromised the JC virus can become active and develop into a viral infection called PML.
    He had a couple of better days, where he seemed to be improving. Then Thursday symptoms of a mini stroke (couldn't use right hand or leg) CT scan normal. Then on Friday the seizure came. It was a bad one, took them 45 min to get it stopped. He was then in critical shape throughout the remainder of the day. Saturday morning doing alright, but the nurses having trouble drawing labs, and flushing his IV site was painful. So the IV team felt he would benefit from a pic line. So they put the pic line in and right after he had another seizure. Again had a rough day, and today he seemed better. Today he was calm, not restless at all, alert at times and recognized people. He is confused alot of the time, and short term memory is not there. I asked the doctor what we should expect, and again its not good. Told me that with any one of these seizures he may not come out of it. Or he could have a massive stroke and pass on. Can't tell me if it could be days, weeks or months. Still in hospital now 3 weeks. Say from here it could be the hospice inpatient unit for a couple of weeks. HOME???humm how do I go to work or anywhere? Who will stay with him and help him with a urnial or walk him to the bathroom and help him with his pants, help him to eat, cut up his food, put his shoes on him and continue to assist him like a small child? And then ask that person to watch for signs of a seizure and if he starts having a seizure roll him onto his left side, and call 911, then hold your breath and hope they get there before he chokes to death on the froath and foam in his mouth. And if that isn't enough, throw in that he could also have a massive stroke while I'm gone too, so good luck see ya when I get back....Humm who will stay with him while I work, go to the store, run to the bank, pharmacy or post office....NO ONE.
    Just impossible to think about where we go from here. The drugs that were supposed to make him better, are now costing him his life. He is confused and unaware even though he was told, he quickly forgot, and maybe that is best. He wouldn't want to realize how he is today. My man, the love of my life slipping away everyday. So sad, I keep the faith and remain strong, but inside I am crumbling. I don't want him to go...

    Heartbreaking
    Your post tore my heart to shreds and touched me deeply.His drs.,nurses,hospital staff should be directing you on setting up the help and support you need if to bring him home.Do you belong to a church,or have a close friend or family near by?You surely do need help with this as you cannot handle the full load yourself.They should be able to set up hospice I'd think.Sending you a huge hug.I'll pray for you and your husband.Michele