Brain Lymphoma

Andyatto
Andyatto Member Posts: 2

Hello,

I was diagnosed at the end of 2012 with primary brain Lymphoma. I have heard it referred to by a number of different names including Primary Central Nervous system Lymphoma, and Non-Hodkinson Lymphoma. I essentially underwent Chemo and radiation and by May 2013 declared to be in remission. I still suffer from neuropathy of the legs and fatigue.

My concerns are, will it come back. I understand that the likelihood of reoccurrence is pretty good. Is that right? I find that the various oncologists I have had over the journey are very non-committal and simply say, everyone is different. Which I fully understand, but I need to know more. Can anyone advise?

I’m 46 years old and this is becoming very stressful for me.

Comments

  • Sten
    Sten Member Posts: 162
    PCNSL survival rate

    Hi Andyatto,

    I see that you posted the same post here as in the forum Cancer Compass. I post the same answer to ensure that you get it.

    I got primary central nervous system lymphoma (PCNSL), a tumour in my cerebellum, and was diagnosed March 2012 at the age of 68. I had first high dose cortisone for a week, then three rounds of 4 day chemo treatments including methotrexate and antibodies, then autologous stem cell collection, a 5 day high dose chemo according to the BEAM scheme, and then autologous stem cell transplant. I was NED (no evidence of disease) in the autumn of 2012. I took Temodar cytostatica pills 4 days every month for two years, ending January 2015, to prevent a relapse.

    Like you, I am interested in facts about risks for relapses and in survival rates. I found good information about this in the forum csn.org , Cancer Survivors' Network. This info was not easy to find, though. Here are the links I found, the latest from 2013:

     
    http://annonc.oxfordjournals.org/content/early/2012/04/03/an 

    http://www.ncbi.nlm.nih.gov/pubmed/22023529 

    http://www.ncbi.nlm.nih.gov/pubmed/21749848 

    https://bmt.confex.com/tandem/2013/webprogram/Paper2711.html


    http://www.ncbi.nlm.nih.gov/pubmed/22473593 

    From these links I gathered that with my treatment the 2 year survival rate was about 67% and the 5 year survival rate about 66%. These figures are specific for patients who got autologous stem cell transplant, like me. So survival for 2 years meant good chances for the future.

    I hope this info helps some.

    Good luck!

    Sten

     

  • Andyatto
    Andyatto Member Posts: 2
    Sten said:

    PCNSL survival rate

    Hi Andyatto,

    I see that you posted the same post here as in the forum Cancer Compass. I post the same answer to ensure that you get it.

    I got primary central nervous system lymphoma (PCNSL), a tumour in my cerebellum, and was diagnosed March 2012 at the age of 68. I had first high dose cortisone for a week, then three rounds of 4 day chemo treatments including methotrexate and antibodies, then autologous stem cell collection, a 5 day high dose chemo according to the BEAM scheme, and then autologous stem cell transplant. I was NED (no evidence of disease) in the autumn of 2012. I took Temodar cytostatica pills 4 days every month for two years, ending January 2015, to prevent a relapse.

    Like you, I am interested in facts about risks for relapses and in survival rates. I found good information about this in the forum csn.org , Cancer Survivors' Network. This info was not easy to find, though. Here are the links I found, the latest from 2013:

     
    http://annonc.oxfordjournals.org/content/early/2012/04/03/an 

    http://www.ncbi.nlm.nih.gov/pubmed/22023529 

    http://www.ncbi.nlm.nih.gov/pubmed/21749848 

    https://bmt.confex.com/tandem/2013/webprogram/Paper2711.html


    http://www.ncbi.nlm.nih.gov/pubmed/22473593 

    From these links I gathered that with my treatment the 2 year survival rate was about 67% and the 5 year survival rate about 66%. These figures are specific for patients who got autologous stem cell transplant, like me. So survival for 2 years meant good chances for the future.

    I hope this info helps some.

    Good luck!

    Sten

     

    PCNSL Survival Rate

    Thank you Sten for your response. 

    As you're in no doubt aware, this can be very stressful worrying about it.  I've read the links you've sent. Unfortunately I didn't receive any stem cell treatment. i had chemo and radiatio. Not really sure as to what differences that all makes. Again, thanks for the response.