Primary CNS Lymphoma

Unicorns said:

Husband has PCNSL
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.

fins1970 said:

Hi Dialpod
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 said:

husband
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 said:

CNS Lymphoma
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.

emilyc46 said:

lyphoma cns

my wife was diagnosed with lyphoma cn s in may of 2010 . ha surgery to remove tumor ,about the size of golf ball. followed by chemo . methotreate and citerbin. for 6 moth . she recovered fairly well from chemo.and had two fairly good years. she pased away in june of 2013. good luck and may good bless

So sorry about your wife passing.  Many hugs sent your way.  It is so hard to lose our partner.

Brian's Wife said:

My husband also has Primary CNS Lymphoma

On January 25, 2016 my husband was admitted to the hospital for his first round of chemotherapy; a mixture of Methotrexate, Rituxin and Potassium Chloride.  The next day I went to visit him and he was trying to climb everywhere.  The hospital staff had harnessed him to the bed.  He was going crazy I thought.  He was calmer the next day and the following days he was even calmer.  So calm that it took a lot of name calling to wake him up.  He would eat (had to be fed) and then would fall back to sleep.  This happened for two weeks.  His oncologist felt since he was in the hospital already he would do another round of chemo.  The same symptoms occurred.  By this time he had been in the hospital for one month, never getting out of bed.  He was finally released but it was to an acute rehabilitation center.  He stayed there for three weeks and then was transferred to a sub-acute rehabilitation center for two weeks.  He finally came home on March 25, 2016.  He was fine, lost a little weight too.  His oncologist suggested he have an MRI every six months, which he did.  Christmas and New Year's came and went but he was always tired.  In March 2017 he started having problems with his sight.  The optomologist said it was floaters, which he had removed on two occasions.  He also had a cataract removed.  It was time again for an MRI.  Well, the CNS came back and it targeted both eyes, mostly the right.  We had to see an ocular oncologist in New York City.  He set up radiation for four weeks (20 days) during the month of July.  Radiation finished and my husband was still complaining that he could not see.  He got new glasses.  Still no good.  The radiologist said it takes a while for the radiation to work.  We went about our summer.  However, my husband started losing his balance a lot and falling.  He was laid off from his job because his kidneys got messed up from a third round of chemo he had in 2016 (I didn't mention this in the beginning of my story) he had a misfortune in the bathroom at work.  I called the radiation doctor's nurse and told her I couldn't handle my husband any more (picking up a 195 pound man from the floor is no easy task) and asked if she could call the oncologist (he never calls me back).  The doctors know each other.  She did and the radiation doctor ordered another MRI.  The CNS came back with a vengeance in just two months.  The oncologist admitted him to the hospital and he was put on another round of chemo.  He finished the three drugs and on the fifth day he went into a coma.  He was in the coma for ten days with breathing and feeding tubes.  It was a miracle but he came out of the coma.  However, he was again in bed for so long that he could not walk.  So, he was sent to a nursing home on September 1, 2017 and has been there since.  He was doing good with therapy but reached a plateau and now we feel he is going downhill.  He is always tired, can't sign his name, does not want to eat, has no strength to even lift his hands and talks in a low voice.  He is 63 years old.

I have read other posts and people who are diagnosed later in life have a lower survival rate.  However, I am not sure if the tiredness is from the disease or if he just has no more will power.  I ask him if he wants to go home and he says yes but then falls asleep.  If the CNS has come back he would not be strong enough for another round of chemo.  Is it possible it came back and is going to other parts of the body, i.e. his throat, limbs, etc.?

Hi Brian's wife,

You really have a hard time.

I had CNS lymphoma in 2012 at the age of 68. I got various treatments, among them autologous stem cell transplant, and I have been in remission for 5 years now. 

I hope for the best for you and your husband.

Sten

Brian's Wife said:

Update

Thank you for your sincerity.

 

My husband's oncologist had mentioned stem cell transplant in 2016 but never followed up.  Not being a medical professional I didn't know if I should have opened my mouth when he ordered a round of chemo for this recent resurgence.  I probably should have.  We could have tried something different, if might have worked, it might not.  Any way, the cancer must have recurred within the last week because every time I visited my husband in the nursing home his demeanor was more lethargic.  He wasn't even chewing the food.  He just let it sit in his mouth, like a squirrel.  Today my father, my mother and I visited him for one hour.  It was our last visit because when I got home from doing errands there were numerous calls on the answering machine from the nursing home.   I called back.  My husband passed away.

Sorry to hear about your loss. 

Just know that part of Stem Cell transplant is very strong chemo to kill off the bone marrow. Then transplanting stem cells in to grow new bone marrow. You would have to ask his Dr about it.

Brian's Wife said:

Update

Thank you for your sincerity.

 

My husband's oncologist had mentioned stem cell transplant in 2016 but never followed up.  Not being a medical professional I didn't know if I should have opened my mouth when he ordered a round of chemo for this recent resurgence.  I probably should have.  We could have tried something different, if might have worked, it might not.  Any way, the cancer must have recurred within the last week because every time I visited my husband in the nursing home his demeanor was more lethargic.  He wasn't even chewing the food.  He just let it sit in his mouth, like a squirrel.  Today my father, my mother and I visited him for one hour.  It was our last visit because when I got home from doing errands there were numerous calls on the answering machine from the nursing home.   I called back.  My husband passed away.

Dear Brian's Wife,

With everyone elso, I am sorry about your husband's passing.  We read death reports here occasionally, not a lot.  But it puts everything back in the big perspective.  It reminds us that Lymphoma and beating it is not primarily about tummy aches or tiredness or whatever that we discuss, but ultimately about life and death.  I feel that every writer here who is in danger of death should assign someone to share if they pass.  But of course they are more concerned with getting from day-to-day.  And some have a personal preferance for privacy, which is understandable and honorable also. Your husband was quite young at only 63, by the standards of modern America. 

A few of your lines suggest a trace of guilt feelings on your part.  Do not allow this to enter your mind.  You obviously did a great deal for him, travelling to all sorts of specialists and doctors. Be proud of your efforts.  No one could have done more.

In particular Stem Cell Transplantation (SCT) is not for everyone. His doctors quite apparantly knew he was too weak for this.  It is a gruesome experience for most, and much harder than virtually any routine chemo experience.  He was just too sick.  It was that simple.

Bkess you and bless his memory. You were his saint,

max

 .

Rebecca_sad said:

New to community

Hi everyone,

i have read a few previous posts and I am sorry to hear you are/ have gone through this.

my 62 year old father was diagnosed with primary cns lymphoma end of June 2017. Had 7 rounds of methotrexate and 2 rounds of another chemo- (can't recall name). He will have another MRI at end of month to determine whether tumor is gone. He has changed in himself- completely different person, quiet/ barely talks. Doesn't remember what happened a few hours prior, doesn't want to move out of lounge chair. Physically has lost all muscle and skin is grey in tone, hair grey and just generally looks like he has aged 20 years in 6 months. Anyone else relate? Just wondering what to expect as an outcome, DR seems hesitant to give prognosis or idea of what is likely to occur. I know everyone is different but what is the average survival time?

 

I believe that we can all relate, Rebecca.

It sounds like your dad likely has chemo fog: A general lack of focus and memory. Usually, this clears slowly after chemo ends.

I was 53 when on chemo, but also lost all muscle mass.  About a month after treatments ended, I was picking up my kid from school one afternoon, and ran into the coach. We spoke briefly, and I said that I felt OK. He then said, "Good, and you are no longer gray colored."

Now I have added prostate cancer, with a loss of male "T".

We all take a hit, but most, if they achieve remission, live to fight another day, to move back toward what we once were.  I hope for wellness on his forthcomimng scan.  There is probably no "average" for his situation. Virtually anythng is possible,

max