CNS Lymphoma awareness

[Jennchap1]

I'm new here. Would be interested in connecting with those who,also have secondary CNS lymphoma I am in remission from DLBC NHL but was unaware that it could cross the blood brain barrier into central nervous system. My bio tells the somewhat scary story. Jennifer

[Hella]

Hi, I have NHL and belong to a facebook group for NHL. Some members have had the same issue as you and could consider joining to connect with them. Helen

[Jennchap1 in reply to Hella]

I posted this on the Lymphoma Club site but didn't hear from anyone:/. Jennifer

[Janekite2015 in reply to Jennchap1]

Hi. Im jane. I was diagnosed with mantle cell lymphoma 5 years ago. It's a scary diagnosis. How did you do with chemo? I was lucky and had few side effects. I hope you stay in touch. Its good to have contact with people who have had a similar experience. Best wishes.

[Jennchap1 in reply to Janekite2015]

Hi Jane:). I did fairly well wih my 6 rounds of R-EPOCH last summer and was in remission with clear Pet scans through this March. Then I began experiencing neurological symptoms. I was diagnosed finally with lymphoma of the CNS and have just finished round 7 of 8 of Ritixin and Methotrexate. After that , stem cell transplant

[Janekite2015 in reply to Jennchap1]

Good luck.

[krayburn Partner]

Glad you could join our new community Jennifer!

[emmathorp]

Hi - my mother is currently going though a very similar sounding situation. Having been in remission for 8 years we are in the same situation. She initially was misdiagnosed twice once as having had a TIA the 2nd as a Stroke.

I do wish you well with your recovery