Primary Cns Lymphoma

Hello,

Does anyone know anything about this disease? My dad has a brain tumor that docotors think is lymphoma but because the decadron he was taking drastically shrank the tumor it was hard to diagnose him after surgery.  They treated him with a gamma knife surgery and we will wait for mri results in 5 weeks. His only symptoms are dizziness, blurred vision and loss of appetite. he is doing alot better after gamma knife, and has no sypmtoms of anything, but is taking decadron (2mg) twice a day. anyone out there have input on this?

My husband has CNS lymphoma. Have you done Google searches to read about it? For the best treatment options, do searches for Fred Hochberg MD and CNS lymphoma OR Lisa DeAngelis MD and CNS lymphoma. Those articles were written by doctor teams who are extremely familiar with this illness. It's a rare cancer.

My husband had to wait a whole summer before being officially diagnosed because of steroids, too.

Good luck to you!

Thank you for sharing! How is your husband doing?   In that year that you waited for diagnosis, did they think it was PCNSL?  Our doctors beleive it is, but don't want to treat him with chemo because they are not certain. 

 I have been researching the diesease alot, but its hard to find much on it.  Since it affects mostly HIV positive people the data is skewed.  Thanks, again.

They keep him on steroids because the gamma knife may cause some edema itself.  I would lower it to as low as possible if he is having no problems since long term steroids have significant side effects.  Usually they also treat the whole brain in this disease and add chemo.

In years gone by they used irradiation,but recurrence was high. (although initial complete response was good, they came back at the original site) My recollection is using some combination of treatment has improved outcomes some but don't remember the numbers offhand.