Diagnosed with CLL then after 4 weeks they found Leptomenangeal..very heavy Chemo for 8 weeks and Leptomenangeal improved. Been on imbruvica

[Rance2222]

After Chemo settled down, very few side effects in the last 15 months , continue to have bloods checked bi-monthly ..To think 18 months ago was on a walker unable to do 30 mtres. A day , now walk 4km everyday in 45 min. Leptomenangeal is a disease that sits in the fluid around the brain and spinal cord , experienced oncologist said she had only come across it 2 times before...Cheers and enjoy life as much as you can.. VIN

[Cllcanada Top Poster CURE Hero]

There was a case study on this recently.. perhaps this is you? Its quite rare but probably under diagnosed.

Imbruvica (ibrutinib) works well in this situation often combined with rituxan.

theoncologist.alphamedpress...

Glad things have improved for you!

~chris 🇨🇦

[Rance2222 in reply to Cllcanada]

Thanks , No don’t think it was me , not much info on Leptomenangeal..

[Mystic75]

Thank you so much for your post. Your progress in 18 months has been incredible. Wishing you a continued recovery and progress. I know it takes a lot of determination and effort on your part. Very impressive and inspiring.

All the best,

D.

[Rance2222 in reply to Mystic75]

Thanks Mystic , nice of you to respond ..