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late stage NHL ?

liltazcat
Posts: 10
Joined: Aug 2006

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?

Michele23
Posts: 168
Joined: Mar 2011

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's picture
COBRA666
Posts: 2413
Joined: May 2010

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's picture
allmost60
Posts: 3184
Joined: Jul 2010

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
Posts: 10
Joined: Aug 2006

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's picture
allmost60
Posts: 3184
Joined: Jul 2010

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
Posts: 592
Joined: Jul 2009

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
Posts: 10
Joined: Aug 2006

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
Posts: 929
Joined: Mar 2010

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
Posts: 592
Joined: Jul 2009

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
Posts: 592
Joined: Jul 2009

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's picture
allmost60
Posts: 3184
Joined: Jul 2010

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's picture
COBRA666
Posts: 2413
Joined: May 2010

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
Posts: 592
Joined: Jul 2009

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
Posts: 592
Joined: Jul 2009

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's picture
allmost60
Posts: 3184
Joined: Jul 2010

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
Posts: 168
Joined: Mar 2011

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
Posts: 929
Joined: Mar 2010

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
Posts: 592
Joined: Jul 2009

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
Posts: 10
Joined: Aug 2006

Came home with hospice care. They were wonderful and caring people who did a great job. We got home on April 8, and he was able to walk with assistance and feed himself. Within two days, I had to feed him every meal, and hold the cup for him to sip from a straw. Got him into the car and took him for a ride on Thursday afternoon. He got so he couldn't walk anymore, and on Tuesday he stopped opening his mouth for food. Tuesday evening he suffered 3 seizures within an hour the first lasting 10 min, the second 12 mins and the third one 15 mins. The hospice nurse came after the first seizure, and by the third one was on the phone with 911 to get him to the hospital to get IV seizure medication. She said we need to get the seizures under control. So at the hospital they gave us the choice of taking him home or to the inpatient hospice to be sure the seizures were under control. We choice inpatient hospice, and thank god as at 3 am he had another seizure that lasted only two minutes. This one left him in a coma and he had no use of his arms or legs. He laid lifeless until Thursday evening when he passed to eternal life at 8:30 pm.
My beloved husband is now with god in a better place without pain or suffering. I wish I could have kept him longer, but knew he would not have wanted to suffer any longer.

To all of you, PLEASE get the drug information on any drugs your doctor wants you to take.
Take the time to read and understand the side effects. Is PML rare? Yes, but it does happen and there is no cure. My husband took these drugs reguardless of side effects and never got sick. People didn't realize he had cancer because he never looked or acted sick. I didn't treat him like he was sick and he didn't want others to treat him that way either. When people knew and aske him how he was doing his response was always "great".
So the rare side effect got him, and until it did he lived life to the fullest, and did the things he loved. His opinion was "Life is for the Living" and he felt if he weren't living he might as well be dead. Said to think, and deal with now, but those words gave
me comfort in my time of sorrow, and I think that I'll have them carved in his head stone.
And always remember Life is for the Living.

Thank you all for your thoughts and prayers. Frank will be sadly missed by myself and all his loving family and friends.

Laurie

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Dear Laurie,
I am so very sorry to hear this news. I have wondered how things were going with your dear husband. I talked to my Oncologist last week about the JC virus and he said it was very, very rare. I have copied and saved all of your posts concerning your husband and will keep them in my cancer notebook for future reference. Thank you for sharing all of the information and making us aware. My heart hurts for you and your family and I will keep all of you in my prayers. Please feel free to post if you need support and comfort. We will always be here for you. God bless you Laurie...Love, Sue

yesyes2
Posts: 592
Joined: Jul 2009

Dear Laurie,
I am so very saddened by your lose. I could tell from your posts how very deep your love is and I'm sure he knew this too. I am just so very sorry you, your husband and your entire family had to go through this experience. Cancer is a nasty beast and to lose someone from the medication meant to save them is heart wrenching.
May you and your family find peace and comfort in the coming days,
With much love, Leslie

truckingalong
Posts: 444
Joined: Aug 2010

Laurie,

My heart goes out to you for your loss. I relate to your grief because my mother passed away last month to ovarian cancer. It is best for them not to suffer - yes Life is for Living - a beautiful quote. Thanks for sharing.

Liz

liltazcat
Posts: 10
Joined: Aug 2006

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
Posts: 168
Joined: Mar 2011

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

miss maggie
Posts: 929
Joined: Mar 2010

Hello, How do I begin to answer your post. There just isn't the right words to comfort
you. All I can offer, is my love and prayers for you both. I wrote you awhile back, I lost my husband, my love, in May 2004. I still feel the loss. We had such a wonderful marriage and had so many wonderful years. We did everything together. All I have left is such wonderful memories. That keeps me going, It really does. I have a wonderful family and amazing friends.

I can only suggest my opinion. I can't imagine your husband being at home. Oh my, choking to death, how horrible. Is there a hospice hospital near you? Where do you live? I live in New York. We have quite a number of hospice's. Calvary Hospital is one.

May the angels watch over you both. God Bless Maggie

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

My heart goes out to you and I will keep you in my prayers. There is no way you can do this all on your own, so please reach out and seek help. There has to be services at the hospital to guide you. Please try to take care of yourself during this hard time, and getting help will take some of the burden off of you. Much love...Sue (FNHL-2-3A-6/10)

liltazcat
Posts: 10
Joined: Aug 2006

The last two days have been okay, no set backs. He remains confused and thinks he is either at work or his childhood community. Doesn't know he's in the hospital. Wonders why I leave in the evening, and don't sleep with him. Fed himself today and used the spoon more easily. Walked a short distance with a walker and the physical therapy assistant. He tends to rub the edges of blankets and the pillow case alot, and rolls blankets up into a ball. Sometimes appears aged, and others very young. Getting clingy wanting me to lay down next to him, he holds both of my hands and looks for me if I leave the room. I so want him to keep his dignity.

I have spoke with the doctor about plans for care. Knowing how involved I have been in Frank's care and that I want to do the best for him. The doctor believes that at home with hospice would be best. I haven't ever known anyone who's had hospice, and don't know what to expect. I have researched it a little on line to see what is available in our rural Pennsylvania community. There is a hospice program through a community nursing program and I have the phone number to pass on to the social worker at the hospital. My heart aches everyday, and maybe the hospice program will benefit me as well. If anyone has ever used the hospice or has good information, please share.

forme's picture
forme
Posts: 1162
Joined: Aug 2010

Hi,
I am so sorry to hear about your husband.

We have had two different times with hospice in the last two years. The first time was with my mom. She has since recovered and is no longer needing hospice.

The second and most recent was with my mother in law. We moved her across the country in Oct and she passed away in Jan of this year. We set up the hospice for the day she arrived in Calif. The hospice we used and loved is called VITAS. They are all over the country. Look them up online and give them a call. They were so helpful in so many ways. What ever we asked for, they were quick to help us get our needs met and my mother in laws needs met. My mother in law spent her final months with loving and respectful care by all the people from Vitas.

If you have any other questions, please ask and I will try to answer.
Lisha

Michele23
Posts: 168
Joined: Mar 2011

Liltazcat,I also live in Pa.My brother-in law uncles many aunts all had hospice.They provided the most caring passionate nurses and care givers.I have already told my family that is who I'd want and to pass at home should the situation come into play.I always did feel its wise for family to know your wishes upfront.One by one we come into the world one by one we leave.God bless,Michele

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