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Brain Lymphoma

Posts: 2
Joined: Mar 2013


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.

Sten's picture
Posts: 162
Joined: Apr 2013

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:






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!



Posts: 2
Joined: Mar 2013

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. 

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