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Leptomeningeal Disease and CLL

Posted by bosunpup @bosunpup, Feb 17, 2021

My father (80 years old) has been diagnosed with leptomeningeal disease which has a very poor outcome. He has been taking Acalabrutinib successfully for the past 9 months. I'm wondering if anyone else has experience with LMD and Acalabrutinib (Calquence) that they could share. Most curious as to how long the medicine is effective since LMD has a life expectancy of up to 4 months and he is well past that. Thank you!

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Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 17, 2021

Hi @bosunpup,
Leptomeningeal disease occurs when your cancer has spread to the meninges. The meninges line the spinal cord and brain. Leptomeningeal disease is a form of metastatic cancer. Because your father's treatment is acalabrutinib (Calquence), I'm wondering, did he have chronic lymphocytic leukemia (CLL) and mantle cell lymphoma (MCL) which then spread?

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bosunpup | @bosunpup | Feb 17, 2021

Hi @colleenyoung ,
Thank you for responding. He did have melanoma about 35 years ago (which I understand can lead to LMD down the road). He was also diagnosed with CLL about 3 weeks before the LMD diagnosis. The acalabrutinib is the only cancer treatment he has been on. Would that be what is keeping the LMD at bay for now? Because LMD is so rare it's very hard to find much information. I appreciate any information you have.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 19, 2021

@bosunpup, I'm not surprised that you're not finding much information about LMD or acalabrutinib. For patients who haven’t been treated for CLL before, acalabrutinib is a targeted therapy. It is a kinase inhibitor that affects the growth of CLL cancer cells. Kinases are part of the chemical pathways within cells, some of which can start the growth of new cells. Kinase inhibitors help stop growth signals and reduce the number of new cancer cells being made.

I assume (but you should confirm with the oncologist) that acalabrutinib will also target the cancer cell that have spread to the meninges and control the LMD. These are good questions to ask his care team at his next appointment. How frequently do you have follow-up appointments?

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1 reply
bosunpup | @bosunpup | Feb 23, 2021
In reply to @colleenyoung "@bosunpup, I'm not surprised that you're not finding much information about LMD or acalabrutinib. For patients..." + (show)
@colleenyoung

@bosunpup, I'm not surprised that you're not finding much information about LMD or acalabrutinib. For patients who haven’t been treated for CLL before, acalabrutinib is a targeted therapy. It is a kinase inhibitor that affects the growth of CLL cancer cells. Kinases are part of the chemical pathways within cells, some of which can start the growth of new cells. Kinase inhibitors help stop growth signals and reduce the number of new cancer cells being made.

I assume (but you should confirm with the oncologist) that acalabrutinib will also target the cancer cell that have spread to the meninges and control the LMD. These are good questions to ask his care team at his next appointment. How frequently do you have follow-up appointments?

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@colleenyoung He was supposed to see his oncologist and neurooncologist in Jan, but due to a snow storm they were pushed back to March and April. We will see his oncologist in a couple weeks. I appreciate the information you have given me!

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