Primary CNS Lymphoma
Comments
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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 Florida0
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Dadtim4343 said: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
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.0 -
My dad - Primary CNS Lymphoma
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.0 -
mother with cns lymphomafins1970 said:My dad - Primary CNS Lymphoma
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.
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.0 -
CNS LymphomaMellody said:mother with cns lymphoma
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.
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.0 -
PCNS lymphomafins1970 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.
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, Murat0 -
Dad's Chemomuratavci said:PCNS lymphoma
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
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.0 -
sister has pcnsl...meningeal small b-cell anaplastic non hodgkinfins1970 said:Dad's Chemo
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.
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.0 -
husband cns lymphomaeldmaw said:sister has pcnsl...meningeal small b-cell anaplastic non hodgkin
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.
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 x0 -
CNS Lymphomafins1970 said:Dad's Chemo
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.
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 64.0 -
CNS Lymphomafins1970 said:Dad's Chemo
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.
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 64.0 -
husband cnsfins1970 said:My dad - Primary CNS Lymphoma
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.
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 xx0 -
husbandeldmaw said:sister has pcnsl...meningeal small b-cell anaplastic non hodgkin
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.
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 care0 -
What will happendialpod said:husband cns
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
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.0 -
CNS LYMPHOMAfins1970 said:What will happen
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.
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.0 -
thank you for youre replyfins1970 said:What will happen
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.
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?0 -
Husband has PCNSLfins1970 said:Dad's Chemo
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.
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.0 -
cns lymphomafins1970 said:My dad - Primary CNS Lymphoma
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.
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. xxx0 -
cns lymphomafins1970 said:My dad - Primary CNS Lymphoma
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.
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. xxx0
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