Hi all,
Thank you for the kind reply on my previous post. Updating on my brother situation (diagnosed GBM March 2016, radiation, temodal, theracim), MRI show spot on February 2017. He decided to undergo surgery just two weeks ago on 31 October 2017 with mass approx. 1.7cm . What confused us is the laboratory report just out and it stated, 'recurrent glioma, with leptomeningeal spread'. But they cannot decide what grade it is as the cell is too damaged by previous chemoradiation and it is 'too small'. Even the neurosurgeon itself not sure what the conclusion means. Do anyone familiar with this term or understand what it means? as I have searched over the internet but still confused if it is a bad things or just a normal explanation. The laboratory also collect another sample stated as 'Scar' and 'Surrounding Brain' which come out as benign tissue. Thank you for the time and attention.
The meninges is a multi-layered membrane that surrounds the outside of the brain, and the leptomeninges includes the inner two layers of this membrane (the layers closest to the brain). Unfortunately the spread of glioma into the leptomeninges is considered to be a bad prognostic factor.
ReplyDeleteWhat treatments are being offered to your brother?
Some studies show maximum treatment of leptomeningeal spread (including radiation) leads to better survival outcomes, but since this is a relatively rare occurrence, most of these studies deal with relatively small numbers of patients.
https://www.ncbi.nlm.nih.gov/pubmed/25168214
Do you know of any doctors on your brother's team that might be open to helping with a CUSP9 style cocktail?
Hi Stephen,
DeleteThank you for your reply! Unfortunately the doctors around us are quite conservative and might not be able to help us with formulating the cocktail. What is CUSP9 style cocktail consist of and how long it takes? And is the leptomeningeal spread means it have spread to the layers of membrane? but is it still possible even the surround brain tissue have been tested out as benign tissue? Thank you so much for your help.
My son was diagnosed with it early June. We finally managed to push our NO to do spine RT. Have it done ASAP !!! My son is still around , but untreated it kills you in weeks
ReplyDeleteHi Olga,
DeleteThank you for your reply! So does it mean it have spread to spine? And what treatment you son get and are there any symptoms? Cause our doctor is so weird that he told us he don't know what it is. Thank you
I am sorry if I somehow scared you - I just want to make sure no one repeats our mistakes ( waiting , not being pushy enough with doctors this delaying treatment ). I could be wrong , but in our case it definitely meant it spread to the spine. Did the doctor explain the diagnosis ? Ours was very weird, kept stalling everything, so we just started pushing for RT and that was the right thing to do ( in our case ).
DeleteAww, I just hate it when they say they “ don’t know “!!!! What prevents them from knowing gor sure ??! Are there any symptoms - back pain etc? If they start , my advice is to push for RT as soon as possible . I think the doctors are hiding behind the lack of protocol for this condition which , at least in our doctor’s case, meant doing nothing . I would strongly suggest meeting with them ASAP and demanding answers and treatment . Good luck !!!!
DeleteHi Olga,
DeleteThank you for sharing your experience. I am not sure why the doctor seem reluctant, possibly because the grade of the tumor uncertain, even though it is mentioned with leptomeningeal spread. Currently, my brother doesn't show any symptoms which making it hard to encourage him to do RT. So how do you determine the treatment ? is it with spine MRI? Thank you once again
I think there is no standard treatment for it, but from what we could frantically find we realized that the most effective way to hold it off is RT. I guess it is true , that if the grade is low maybe nothing should be done unless there is an onset of symptoms. Our situation was I guess a bit different- we knew it was high grade in the brain , so when they suspected it was lepromeningial spread ( saw it in the ventricals on the brain MRI), they did spinal MRI to confirm . Did your doctor do spinal MRI? I think it is absolutely crucial they do.
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