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Primary CNS Lymphoma

KathR
Posts: 3
Joined: Jun 2009

Hi, New here. My Dad has just been diagnosed with Primary CNS Lymphoma. His tumor was taken out last month May it was just about the size of a golf ball (at base of brain attatched to spinal cord). Anyway he is out of rehab today and has to have another MRI asap according to Doc. This is scary stuff and Mom and Dad were just married 47 years. We are a very close family. Does anyone know of anyone ever beating this or am I having a pipe dream. I need some kind of hope here. Thank you in advance.

tim4343
Posts: 23
Joined: Jun 2009

Kathi i my self am new here also just joined Monday, and am just begining this journey my self But the one thing i know that your parents have is a lot of faith in each other after 47 years , So right now your strongest thing to have is your faith so keep your faith and it will spill over to your dad and mom , My faith is that he will come through this mainly becasue you guys are real close and there is strength in numbers Keep your Faith and it will happen .Tim In north Florida

KathR
Posts: 3
Joined: Jun 2009

Tim, Thank you. You are right. It is difficult right now because I am not able to be with them as I live in the north and they are in the south. I have some flexiblility with my job but not as much as I would like at this time. He is in good hands with my Mother and Sister and his attitude is just amazing. This is just a shock and he is not that old only 68. I know there is a reason for all of this I just wish that is was not so painfull. Thank you for your kind words and I hope your situation is going well for you. K.

tim4343
Posts: 23
Joined: Jun 2009

Thanks KathR it means more than yoiu know tooo see a family that hangs together during good and bad times and that is what will bring you and your family through this Remember strength in numbers Test Of Faith !!!

fins1970
Posts: 6
Joined: Aug 2009

Hello KathR - My father had Primary CNS Lymphoma as well. He was diagnosed in February of 2005 and just passed away a few weeks ago on August 5, 2009 - he was 75. He had a tumor on his pituitary first which was destroyed by high dose methotrexate. About 8 months later he relapsed and there was another tumor in his cerebellum. After a few more types of chemo, he finally got rid of the 2nd one. I think he eventually went through six different types of chemo. He had clear MRI's for a long time and to our knowledge it never spread to his eye and spinal fluid. But one thing the doctors told us when this all first started was that my dad would have microscopic cancer cells in his brain that would eventually rear their ugly heads which is exactly what happened. They told him he had an average of 44 months to live and he made it almost a year past that.

It was a long 4 1/2 year journey but as long as your dad wants to fight it I would guess you have a few years barring any complications. I kept the hope the entire time until about 6 weeks ago when we had to put him in Hospice. I still didn't give up hope, I just shifted my thinking to the fact that he wasn't going to be around for much longer.

It's a hard pill to swallow but unfortunately, this monster called cancer gives us no choice. You must make the most of everyday with him. If you want more details, respond back. I will be honest with what the last 8 months have been like if you want me too. The doctors and hospice people all told us that they didn't know anything about this type of cancer and what it would eventually do. I know now and would like to help people be ready for what may come. Thanks. I will keep you and your family in my prayers.

Mellody
Posts: 1
Joined: Sep 2009

Hello...I am so sorry for the loss of your father. I lost my father a couple years ago due to cancer as well. My mother has cns lymphoma recently diagnosed. We haven't been able to get a clear answer from the doctors on prognosis. Can you give me an idea on what to expect? Right now, she is back to her usual self after having some fluid drained from her brain, but this has happened before and then she returns to having issues with speech and mobility. She has had two chemo sessions and we've been told that the tumor has decreased some. Any information you can share would be appreciated.

fins1970
Posts: 6
Joined: Aug 2009

Hello Mellody - Sorry it took me so long - I don't check this everyday. Thank you for the condolences. It has been very hard. Cancer just sucks. I am sorry to hear about your parents. We were not able to get clear answers from doctors either. I think because it's still such a rare cancer. From what I understood, prognosis has a lot to do with age and where the tumor is. If it's in the deeper parts of the brain (pituitary, cerebellum, etc) prognosis is worse. Although my dad's were in both places and had just turned 71 and he made it 4 1/2 years. Way longer than anyone expected. He was also very lucky in that he never had seizures, fluid on his brain, swelling or anything like that. If seems that they have come very far in treatment for this cancer.

The bottom line is this. Doctors were able to get rid of the tumors. They were not able to get rid of the microscopic brain tumors that they said would always be there and would eventually make themselves known. They said that they could radiate his whole brain if he wanted but that would make him have dementia. He started getting very tired last December (2008)and went downhill very quickly. It got to the point that the doctors said they would not treat him anymore because of his physical condition. We thought maybe the steroids and hormones in his body were screwed up because of the original tumor on his pituitary, but we now think the microscopic cancer just was finally rearing it's head. He slowly stopped eating as much. He would still eat but often had to force himself to eat and it was very little. We had him in the hospital four times because he was so dehydrated. By the end he had lost 60 or 70 pounds. He had no energy and could not keep himself awake. He would always wake up if we talked to him or roused him. He basically sat in a chair for the last 6 months of his life. He vomited quite a bit and had incontinence problems. He also had depression and didn't want my mom to leave him. He couldn't remember anything short term and got angry about that. He was disoriented. He would force himself to do things like attend family outings, but we would have to basically carry him places because he could not stand up for very long without passing out since his blood pressure would drop to almost nothing when he stood up. He kept falling so we finally had to call Hospice and take him there because my mom couldn't manage him and we were afraid one of them would get hurt.

In Hospice for 6 weeks, he slept. He complained of being dizzy all the time and could barely sit up. He couldn't do anything on his own even though he tried. He still said he wasn't in any pain but he could never get comfortable. He was very confused but tried very hard to stay awake when there were visitors but could not. We had to feed him. He stopped eating 18 days before he died. He stopped drinking the little sips of water he was drinking a few days before he died. One day he was barely responsive, the next day he took a bad turn and passed away 11 hours later with me, my mom and two close friends by his side. It was very peaceful because the Hospice people helped medicate him so he wasn't so restless. The Hospice doctors told us they had never had anyone there die from this kind of cancer so they didn't know what to expect. Apparantly it went just like anyone else. He just stopped breathing. The book "Gone From My Sight" explains exactly what happened in the last months. It happened just like that over the last months. He even said "I want my mom" when they gave him a shot (his mom died when he was 13) and talked about his childhood out loud. Like he was reliving his life. He didn't recognize me once. That was very hard.

So I would say the most prominent thing in the last months was the tiredness and major loss of appetite. The dizziness was also a big factor. He was basically fine up until December, although for the last 4 1/2 years, he has always said he felt "foggy". Probably from all the chemo.

Don't be afraid to call Hospice in for help if you need it. They are not just for the last few days of life. They can help you for months, even years, but they won't take her if she wants treatment. It is only comfort care and for when there are no other options. They are wonderful and Medicare pays for it. They can help you keep her at home as well. Although we tried that and it was very difficult. Hospice can't be there 24/7 so you and your family would do most of the care, which, if you are not ready or equipped physically for it, is very hard and emotionally taxing.

Hope this helps. If you need details about the exact type of chemo, I'll have to consult my mom. If you have any other questions, please let me know. I will be praying for you and your family.

muratavci
Posts: 1
Joined: Dec 2009

Hello fins, I am very sorry to hear about your Father. My Mum is being treated for the same illness since 1.5 months, doctors follow here the Journal of Clinical Oncology 20:4643-4648 dated from 2002 with the omission of radiotherapy for concerns of dementia. What worries me is that her state now reminds the last 8 months of your father, although her blood tests and immunity is good.
I'll be very glad to receive the details about the exact type of chemotherapy, steroids and the schedule applied to your father. I'm sending my condolences, Murat

fins1970
Posts: 6
Joined: Aug 2009

Hello muratavci - They never radiated my father's head either because of the concern of dementia. Blood tests and immunity were always good with my father as well. That is the strange thing about this cancer. It doesn't really show anywhere. I will work on getting the chemo and everything my dad had to you. I will probably wait until after the holidays. It's very hard right now. I know the first round was Methotrexate which broke the blood brain barrier - he was in the hospital getting that for 1 week per month for I think 7 or 8 months. That worked, then at relapse, he tried oral chemos for a while which didn't work. Then I think another IV chemo worked for the 2nd tumor. Good luck to you.

eldmaw
Posts: 2
Joined: Dec 2009

She is looking for some information from a person who is going through the same kind of cancer and knows what she's gone thru already with the high dose chemo/side affects and what she is looking at with radiation as her "only" other option. Supposed to start WBRT next week. She has two children...doesn't want to lose her hair and die bald. She's scared because her cancer is very aggressive...they have already told her since the chemo didn't work, the radiation will stop it, but it will come back in 3-4 months. She doesn't know what to do because nothing looks good...either she dies with cancer or she dies with radiated cancer, dementia and possible other motor issues. I can't find any good prognosis in the medical communities online research publications to offer her hope for the years she wants. Her doctors said they would completely understand if she wants to "take a vacation" and not do anything. But if she has a chance at a durable remission or partial remission? How do you weigh those odds when either choice ends badly? Our grandmother died of lung cancer from breast cancer, she had no chemo or radiation after the surgery that I know of....do any caregivers know what is it like to not treat pcnsl and just let nature take it's course? Before her diagnosis she was losing weight and really tired with huge headaches....stayed in bed most of the time. Four months after chemo, it's like she isn't sick, but now there are sharp millisecond headaches occassionally and night sweats and teary eyes. And an MRI saying it's back and twice as big....(but her symptoms aren't there....no double vision, swollen lymph node, massive headaches) If you didn't know she was sick, you wouldn't think she was....but they say her severe symptoms will return. She slept alot...that doesn't seem too bad of a way to go....She has her hair....a BIG issue for her...which will be moot in 2-3 weeks. If you or yours have or are going thorough the hell of this diagnosis and would be willing to discuss your experiences that may be beneficial to both me and my sister that would be great. Thank you.

dialpod
Posts: 10
Joined: Feb 2010

hi my husband went very confused in june 2006 and ended up in hospital after several tests and two inconclusive biopsies they decided to treat him for pcnl he had methotrexate and steroids he went into remission for two and a half years and then had chemo agai and went to birmingham for stem cell transplant but became very confused during the chemo so it had to be stopped, he then had intrathecal chemo into his back and whole brain radiotherapy to control the tumor but not cure he was told no cure just time and would be months rather than years. he stays in bed untill two or three everyday but has no pain just feels worn out. the last three days has said got a fuzzy feeling in his head its now been six months since treatment and hes so very brave and im so very frightened how will it end help me please diane x

dialpod
Posts: 10
Joined: Feb 2010

my husband says he gets like a small migrane and wobbly head. doesnt have any other pain but he has teary eyes aswell doesnt get out of bed till about one two each day not much energy but everyone says how well he looks and only been given months. he lost all his hair with whole brain radiotherapy but it has now grown back he has been battling since june 2006 and just accepts his lot but i cant . take care

dhtdiver
Posts: 2
Joined: Feb 2010

I was diagnosed on Oct 1, 2009 with a 3 cm mass in the left side of my brain which affected all the movement on the right side of my body.

I immediately began chemo with Methotrexate--5 days in the hospital every 14 days. After 4 treatments, a follow up MRI showed the tumor had shrunk by more than 1/2. 4 more treatments, another MRI showed further shrinkage--so much so we are taking a break from MTX and are in a series of 12 (Novalis) focused radiation treatments, 2 more to go. We are considering resuming the MTX in another few weeks as a maintainence procedure--lower dose, every 28 days, or using the radiation if anything else shows up. Another MRI is scheduled in 6 weeks--that should show what's doing.

I have had very little side effects to the MTX and none to the radiation.

In the meantime-- my strength, balance, mobility are getting pretty close to "normal"--I'm able to drive, ride my bicycles, swim, do regular gym workouts, etc.

I know that all situations are different, mental attitude is important, but there is HOPE!!

PS: I am 64.

dhtdiver
Posts: 2
Joined: Feb 2010

I was diagnosed on Oct 1, 2009 with a 3 cm mass in the left side of my brain which affected all the movement on the right side of my body.

I immediately began chemo with Methotrexate--5 days in the hospital every 14 days. After 4 treatments, a follow up MRI showed the tumor had shrunk by more than 1/2. 4 more treatments, another MRI showed further shrinkage--so much so we are taking a break from MTX and are in a series of 12 (Novalis) focused radiation treatments, 2 more to go. We are considering resuming the MTX in another few weeks as a maintainence procedure--lower dose, every 28 days, or using the radiation if anything else shows up. Another MRI is scheduled in 6 weeks--that should show what's doing.

I have had very little side effects to the MTX and none to the radiation.

In the meantime-- my strength, balance, mobility are getting pretty close to "normal"--I'm able to drive, ride my bicycles, swim, do regular gym workouts, etc.

I know that all situations are different, mental attitude is important, but there is HOPE!!

PS: I am 64.

Unicorns
Posts: 1
Joined: Nov 2009

Sorry for your loss. The doctors diagnosed my husband with diffuse large B-cell Primary Central Nervous System Lymphoma in August 2009 after removeal of a tumor on his cerebellum. My husband is 62 now. In Sept. 2009 they started him on Methotrexate every two to three weeks apart. I do not get much from the doctors, most of everything I know I have read on the internet. My husband is bedridden, he can not walk or stand, he needs help tuning over most of the time. I don't know if any or all is caused from his condition or the chemo. He is in right now having his 8th and final round of chemo. After his 7th round of chemo he started eating less and said he was nausea. Now he is hardly eating at all. Today is 3rd and the last time he ate was on the 1st he had a hash brown from McD's. He is nausea and when they give him something he says he is not hungry. I go to the hospital and seems just sit there and watch him slip away. His blood work is ok. I feel so helpless.

Good luck to everyone who has to face this ugly monster,
Sorry to the ones who have lost someone to this monster.

dialpod
Posts: 10
Joined: Feb 2010

just read youre post my hubby is sixty one this year and never had surgery as three tumors and to deep he stays in bed till after lunch and is tired all the time he says he has no pain does youre hubby xxx

dialpod
Posts: 10
Joined: Feb 2010

Does you're husband have medication for his nausea I asked for it for my hubby.he has domperidone and it does help love to you iknow what you're going through our hubbys are similar ages I am fifty two . Xxx

DavidSaker
Posts: 1
Joined: Dec 2012

Thank you for posting this information about 'sleeping'.

My Dad is 78 and was diagnosed last June, it's now December and he is sleeping all the time. We thought it was maybe the wrong medication we were doing something wrong - but after reading your post we now know it's the Lymphoma that's making him sleep.

It sounds silly but just knowing that has really helped - Thank You.

dialpod
Posts: 10
Joined: Feb 2010

hi my husband is nearly sixty one and was diagnosed in june 2006 he did have a remission but came back january 2009. he has been telling me hes got a wobbly feeling in his head but no pain they cant give him anymore treatment he had all the chemos and whole brain radiotherapy couldnt operate as there are three tumors frontal and both sides i just wondered what to expect near the end im so worried thanks for reading this xx

fins1970
Posts: 6
Joined: Aug 2009

Dialpod - I'm so sorry you are going through this as I am sorry about all of you who have posted. If you scroll up a bit and read my post from 9/15/09, this is exactly what happened to my father. He lived 4.5 years which is a year past what they told him, I believe, b/c of his incredible attitude. You should also read the book "Gone From My Sight". This explains a lot. Again, I'm so sorry.

cns_daughter
Posts: 1
Joined: Feb 2010

My mother lost her battle with CNS lymphoma on 12/06/09 after 4 years. I will try to write up a detailed description of it all, but for those of you looking for some answers about what the end is like, I found a website that was a little better than the hospice brochure "Gone From My Sight" The website is not specific to CNS lymphoma, but to brain tumors in general - www.brainhospice.com

I'm so sorry that everyone here is going through this nightmare.

dialpod
Posts: 10
Joined: Feb 2010

thank you for youre reply and sorry for youre loss. my husband gets out of bed at about two or three in the afternoon and walks down his garden and has a little tat about but has no energy still got his bad cough doesnt have any pain but says he feels a bit woozy in his head when hes doing things went to onc this week and bloods were fine just told us see you in june hopefully?

dialpod
Posts: 10
Joined: Feb 2010

thank you for youre reply and sorry for youre loss. my husband gets out of bed at about two or three in the afternoon and walks down his garden and has a little tat about but has no energy still got his bad cough doesnt have any pain but says he feels a bit woozy in his head when hes doing things went to onc this week and bloods were fine just told us see you in june hopefully?

dialpod
Posts: 10
Joined: Feb 2010

hi there i see youre dad survived over four years with this awful illness. my hubby was diagnosed in june 2006 has had chemo whole brain radiotherapy tried a stem cell transplant but failed. never had surgery as there were three tumors and to deep/ he now doesnt get up till the afternoon and is tired all the time. how did youre dad go in the end did he have pain anywhere and did the cancer go anywhere else in his body. my hubby is so positive and never complains sorry about youre loss. xxx

dialpod
Posts: 10
Joined: Feb 2010

hi there i see youre dad survived over four years with this awful illness. my hubby was diagnosed in june 2006 has had chemo whole brain radiotherapy tried a stem cell transplant but failed. never had surgery as there were three tumors and to deep/ he now doesnt get up till the afternoon and is tired all the time. how did youre dad go in the end did he have pain anywhere and did the cancer go anywhere else in his body. my hubby is so positive and never complains sorry about youre loss. xxx

fins1970
Posts: 6
Joined: Aug 2009

I'm so sorry you're going through this. Yes, my dad survived over four years. My post above explains a lot. Near the end he did nothing but sleep. He went in to Hospice on 7/12, stopped eating on 7/19, stopped drinking anything a few days before he died. He died on 8/5. He was asleep almost that entire time. We were able to wake him up until a couple of days before but he was very disoriented, dizzy and didn't know who we were. He talked about his mom (who died when he was 13) and said some strange things we didn't understand - it was like he was re-living his life.

Just tell your husband everything you want to tell him now before anything happens. That's what I did with my dad and I have no regrets. It will probably make things easier for you if you do this and just keep telling him you love him and that you're there for him.

I'm so sorry. Cancer sucks.

dialpod
Posts: 10
Joined: Feb 2010

thank you so much for getting back to me. my husbands bloods came back okay and says hes got no pain. some days i think he will be okay but then when i see how tired he looks and the fact he doesnt get up till afternoon i know hes not well. he says his head feels fuzzy but doesnt hurt and he walks unsteady i just wondered whether he would get any more symptoms anywhere else and whether this cancer can go anywhere else he says he has a niggly pain in shoulder but only if i ask he never complains about anything thanks again for youre reply diane xxx

fins1970
Posts: 6
Joined: Aug 2009

I thought I just posted this but I'll try again. This cancer can spread to the spinal fluid and eye fluid. My fathers never spread. In the end we thing it was the microscopic bits of cancer in his brain that the doctors said were present since he was diagnosed. He was never in pain, he just was "fuzzy" all the time. About 2 months before he died we had to start following him everywhere and helping him walk everywhere because he would try to walk on his own but couldn't. His blood work was always pretty much normal except for hormone issues b/c of the first tumor being on his pituitary. No matter what happens, only God really knows the timing. Cherish this time. You are in my prayers.

davesm8
Posts: 1
Joined: Jun 2010

My husband had a tumor the size of a golf ball removed from the center of his brain 01/2009, which was removed, he still has short term memory loss and had to learn to walk again. We were told it was malignant, Primary CNS lymphoma. He had 12 chemo treatments methotrexate(?), went in remission in March 2010, now it is June 2010, after 3 MRIs once a month, the cancer has returned, he started complaining of being dizzy, sleeping more, and his vision is "fuzzy". My husband's oncologist has him doing 7 biweekly methotrexate treatments, then some monthy treatments, hopefully the cancer again goes in to remission, the doctor will start him on oral treatments to extend the remission period. I understand this is new, but does anyone have any info about the oral treatments? By the way hubby was 52 when he was first diagnosed, now 54... thks

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