Burkitts Non Hodgkin lymphoma- cancer in spinal fluid

[Guest guest]

Hey Everyone

I posted on the board when my husband was first diagnosed with NHL.

To date he has completed 4 rounds of rigorous EPOCH IV chemo - his scans were

clear of cancer after the 2nd round and he completed 2 more as a precaution.

His first spinal tap and fluid pull was clear. The second was 'suspicious' and

he recieved chemo to the spine and the 3rd - most recently pulled - was

'positive'. He had another dose injected at the time. I am very concerned by

this- it is carcinoma meningitis. And what I research and find is grim. His

Oncology nurse tells me he has responded well to his IV chemo, he shows no signs

of brain issues: headache, slurred speech, sight issues, but I am very very

scared. He will now have stronger chemo to the spine every other week and we

will go from there.

Does anyone have experience with this? Or know anyone who does? Specifically

the cancer cells in the spine? I found one similar article from 2002 on TheBody

but like I said everything else I find tells me he's a goner within months. But

like I said he has no symptoms. If anything his CD4 and VL have continued to

improve throughout this ordeal. CD4 240 VL 130. His blood counts are healthy.

He's done so well. I can't from that he'll have come all this way only for me

to lose him.