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Leptomeningeal disease

User
Posted 11 Mar 2022 at 21:14

My husband has just been diagnosed with leptomeningeal disease after a series of mini strokes (TIAs) resulted in a temporary loss of speech.  10 doses of radiotherapy have been recommended and I wondered if anyone has had experience of this complication?

User
Posted 12 Mar 2022 at 00:51
Sorry to see this. I can only think of one member who ever posted with this diagnosis and he wasn't offered RT, just the traditional HT. That was 11 or 12 years ago though, not long after I first joined.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 14 Mar 2022 at 19:03
Thank you. I'll keep posting then just in case some one experiences it in the future. Leptomeningeal disease is when the cancer spreads to the meninges in the skull and/or spinal cord, Neil's is in the skull. Neil has had five episodes of cluster TIA's over two and a half weeks during which he could not speak clearly for between 5 and 20 minutes at a time in clusters of 2 or 3. During the last one his legs became quite weak which is another symptom of the disease. None of these effects continued. For the first week he was diagnosed as having a a small bleed and then clots and it appears that the stroke unit were confused by the thickening of the meninges as seen through two CTs. It was only after an MRI and when the stroke unit told oncology they did not think these were normal strokes that the diagnosis was made. Looking online the prognosis does not appear great, although after 11 years of prostate cancer we are aware we have entered the final stages. I should stress that I have read this is a very rare complication only occuring in 5% of cancer patients and very rarely in prostate cancer. It's a shame because the radium 223 was having an impact but this has had to be paused while radiotherapy goes ahead. The plan is to resume the radium a couple of weeks after the radiotherapy ends. Face mask for radiotherapy being made on Wednesday when we will also visit the hospice to meet the palliative care nurse. Otherwise Neil is not too bad at present. He is in pain but this is being managed well and he doesn't always need morphine. He uses a stick to help him walk. They have increase his steroids to 8mg per day so he is not sleeping as much and his appetite is still reasonable.
 
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