CNS lymphoma prognosis, median survival time, and relapse statistics?

Sten

Hi all,

I am new to this forum. I am from Stockholm, Sweden, was born in 1944, and I was diagnosed with CNS lymphoma in March 2012.

I got three treatments with cortison, cytostatica (methotrexate and others) and antibodies, and so my tumour vanished. My bone-marrow stem cells were then harvested and frozen, and in August 2012 I got a high dose cytostatica treatment according to the BEAM program (full dose) to take away possible invisible micrometastases (small daughter tumours), and then I got my stem cells back to restore my bone-marrow which was detroyed by the high dose treatment.

Since February 2013 I take cytostatica tablets with 250 mg of temozolomide for four days every month as a preventive measure against a relapse. This treatment is planned to continue for at least two years.

Now, I am interested in prognosis and survival and relapse statistics for my disease and my treatment. I have looked at Internet but found only old information, and the modern treatment that I got is probably better and more efficient. My doctor is very good but does not like to talk about these matters.

Where can I find the information that I want? I would be grateful for your help.

Best regards,

Sten

 

leprechaun2

Hi Sten,
Glad you have made

Hi Sten,

Glad you have made it this far!

My husband had his Stem Cell Transplant in July of '10.  He has had no treatment since, but his follow-up consists of regular MRIs, about every 2 months. His original diagnosis of Primary Central Nervous System Lymphoma was in June of '08.

He had many treatments and 2 reoccurances prior to his transplant but he has been clear since.  Due to his tumors and treatments he has had some side effects which have been difficult to deal with but he is a fighter and is very courageous!  He had difficulty walking and memory issues which were improved when he had a shunt put in last year to relieve the fluid that was building on his brain.  We will be at the doctor in a few weeks for a check up.  I am hoping to hear continued good news.

I hope you continue to do well.  If there is anything more specific I can answer, I will be happy to do so.

If you are still researching, I suggest adding 2011 or 2012 to your web searching as older news is just not as positive as today's treatments are yielding!

May God bless you and your family and please keep in touch.

Sten

leprechaun2 said:

Hi Sten,
Glad you have made

Hi Sten,

Glad you have made it this far!

My husband had his Stem Cell Transplant in July of '10.  He has had no treatment since, but his follow-up consists of regular MRIs, about every 2 months. His original diagnosis of Primary Central Nervous System Lymphoma was in June of '08.

He had many treatments and 2 reoccurances prior to his transplant but he has been clear since.  Due to his tumors and treatments he has had some side effects which have been difficult to deal with but he is a fighter and is very courageous!  He had difficulty walking and memory issues which were improved when he had a shunt put in last year to relieve the fluid that was building on his brain.  We will be at the doctor in a few weeks for a check up.  I am hoping to hear continued good news.

I hope you continue to do well.  If there is anything more specific I can answer, I will be happy to do so.

If you are still researching, I suggest adding 2011 or 2012 to your web searching as older news is just not as positive as today's treatments are yielding!

May God bless you and your family and please keep in touch.

Thank you for your response, leprechaun2!

Hi leprechaun2,

Thank you for your response! I hope that your husband will remain free from the disease. 

It is good to see that a stem cell transplant can have a great effect.

I agree that only new information about PCNSL treatments and statististics is worth considering. I have found some info in another thread in this forum, and it also contains links to other websites: http://csn.cancer.org/node/220186

Prayers to God are very helpful when you try to keep your spirits up.

 

SusanEmma

PCNSL

Hi Sten!

I hope you are feeling well.

My husband Bob was diagnosed with PCNSL in August of 2008 at age 47. He had a lot of the same chemo you had and also stem cell transplant. No treatment since.

Besides some neuropathy in his hands and feet from one of the chemos, (Vincristine) he is doing very well. Officially four years in remission, it will be five years since diagnosis in August.

I can't find any new statistics  on the survival rate of this disease. The old ones are dismal.

I like to believe the stem cell transplant was his "insurance plan" and it will never come back.

He likes to believe he was never sick in the first place.

His oncologist has said he sees no reason why it would ever come back. They essentially wiped out all traces with some of the highest doses of chemo they had ever administered. (Phase 2 trial at Memorial Sloan Kettering in New York City)

 

We also have a family friend who had the same disease and she has been in remission for over 20 years. That was long before stem cell transplants and high dose chemotherapies. So even with the old statistics, she beat them.

 

It sounds as if your doctor is on top of things and you are being taken care of very well.

Plan on a very long and healthy life and try to forget about the statistics. Someday the medical community will update those statistics and you and everyone else will be known as the ones who were part of the cure!

Have a great weekend!

Sue

 

 

 

SusanEmma

SusanEmma said:

PCNSL

Hi Sten!

I hope you are feeling well.

My husband Bob was diagnosed with PCNSL in August of 2008 at age 47. He had a lot of the same chemo you had and also stem cell transplant. No treatment since.

Besides some neuropathy in his hands and feet from one of the chemos, (Vincristine) he is doing very well. Officially four years in remission, it will be five years since diagnosis in August.

I can't find any new statistics  on the survival rate of this disease. The old ones are dismal.

I like to believe the stem cell transplant was his "insurance plan" and it will never come back.

He likes to believe he was never sick in the first place.

His oncologist has said he sees no reason why it would ever come back. They essentially wiped out all traces with some of the highest doses of chemo they had ever administered. (Phase 2 trial at Memorial Sloan Kettering in New York City)

 

We also have a family friend who had the same disease and she has been in remission for over 20 years. That was long before stem cell transplants and high dose chemotherapies. So even with the old statistics, she beat them.

 

It sounds as if your doctor is on top of things and you are being taken care of very well.

Plan on a very long and healthy life and try to forget about the statistics. Someday the medical community will update those statistics and you and everyone else will be known as the ones who were part of the cure!

Have a great weekend!

Sue

 

 

 

pcnsl

I forgot to say that my husband Bob now only needs one MRI a year!

At first it was every two months, then three, then six, now twelve. This is one of those times when you can say modern medicine is a wonderful thing!

 

Sten

SusanEmma said:

pcnsl

I forgot to say that my husband Bob now only needs one MRI a year!

At first it was every two months, then three, then six, now twelve. This is one of those times when you can say modern medicine is a wonderful thing!

 

Thank you, SusanEmma!

Thank you, SusanEmma,

For your response and for your encouraging words.

There is always hope, regardless of statistics. When I got the disease, I thought about life and found that my family is most important to me. I decided to fight the disease and to try to keep my spirits up. I simplified our economy in order to make it easier to handle for my wife, if needed, and I gave her full authority to make decisions about economy and about nursing of me (if necessary). 

I am feeling all right now, and in a few weeks my wife and I will go to southern Spain for a fortnight and visit Granada with Alhambra, Sierra Nevada, and other places.

Best regards,

Sten

Boo3265

leprechaun2 said:

Hi Sten,
Glad you have made

Hi Sten,

Glad you have made it this far!

My husband had his Stem Cell Transplant in July of '10.  He has had no treatment since, but his follow-up consists of regular MRIs, about every 2 months. His original diagnosis of Primary Central Nervous System Lymphoma was in June of '08.

He had many treatments and 2 reoccurances prior to his transplant but he has been clear since.  Due to his tumors and treatments he has had some side effects which have been difficult to deal with but he is a fighter and is very courageous!  He had difficulty walking and memory issues which were improved when he had a shunt put in last year to relieve the fluid that was building on his brain.  We will be at the doctor in a few weeks for a check up.  I am hoping to hear continued good news.

I hope you continue to do well.  If there is anything more specific I can answer, I will be happy to do so.

If you are still researching, I suggest adding 2011 or 2012 to your web searching as older news is just not as positive as today's treatments are yielding!

May God bless you and your family and please keep in touch.

Hi I have noticed that you

Hi I have noticed that you have mentioned some side effects of chemo, my father has been diagnosed for CNS Lymphoma and his tratment is starting this week. I would like any word from you that would be helpful in preparing my mind for what lies ahead. What are the expected reactions to chemo? 
This is all very worrying and I want to be there to support my parents. 

Sten

Boo3265 said:

Hi I have noticed that you

Hi I have noticed that you have mentioned some side effects of chemo, my father has been diagnosed for CNS Lymphoma and his tratment is starting this week. I would like any word from you that would be helpful in preparing my mind for what lies ahead. What are the expected reactions to chemo? 
This is all very worrying and I want to be there to support my parents. 

Expected reactions to chemo

Hi Boo3265,

It is good that you want to support your parents. A supportive family is important for your father.

There are many kinds of chemos, and reactions on a specific chemo can also be quite different for different persons. Generally, you can expect nausea and tiredness, but there are good medicines for nausea. The best thing to do is to ask the doctors about possible reactions to the chemos that are planned for your father.

I wish you and your father good luck! While CNS lymphoma is a serious disease, it can be cured and with the best treatments the two and five year survival rates are both about 65%, five year rate only slightly (2%) smaller. 

I was diagnosed for primary CNS lymphoma in March 2012, and I have now been free from visible cancer for more than one year. I have taken pills of the chemo Temodar for four days every month for eight months now to prevent a relapse, and the plan is to go on with Temodar for a total of two years.

Mary N.

Sten said:

Expected reactions to chemo

Hi Boo3265,

It is good that you want to support your parents. A supportive family is important for your father.

There are many kinds of chemos, and reactions on a specific chemo can also be quite different for different persons. Generally, you can expect nausea and tiredness, but there are good medicines for nausea. The best thing to do is to ask the doctors about possible reactions to the chemos that are planned for your father.

I wish you and your father good luck! While CNS lymphoma is a serious disease, it can be cured and with the best treatments the two and five year survival rates are both about 65%, five year rate only slightly (2%) smaller. 

I was diagnosed for primary CNS lymphoma in March 2012, and I have now been free from visible cancer for more than one year. I have taken pills of the chemo Temodar for four days every month for eight months now to prevent a relapse, and the plan is to go on with Temodar for a total of two years.

Hi, Boo -I unlike Sten have not recieved a transplant and the only chemo I have gotten is high dose MTX and Rutixan.  I was diagnosed in 2010 and have seen no more evidence of any change in my brain as shown on MRI for about 3 years now.  I think they think I'm too old for a transplant ( I'm 73)  I have just a few side effect from the high dose MTX but the biggest is the bordom I have when in the hospital.  I am a bit tired for about a week after.  The Rutixan, I'm just tired for a couple of days.  I have found that at least with my chemo it is not terrible and once I got my brain back from the swelling and tumors shrinking, life has been pretty normal except I get tired more easily and have learned to take a nap when I need it.  I wish you well with whatever treatment you are undergoing.