leptomeningeal carcinomatosis
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So saddened to hear about LovefromPHilly. I remember her smiling face on her posts. This past year has been horrific in the losses mounting up Such a terrible end to a bright light. .
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Oh no, that was so fast, just heartbreaking. Love to philly
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I noticed this forum hasn't been active in a while posting here to see if anyone has any stories of success or what to expect as we navigate this new diagnosis with my mom. Ill start with her timeline:
2003 lumpactomy-mastecomy er+pr+her2-. Did chemo only no radiation was cancer free for 12 years
2015-back pain showed bone mets. Started ibrance and femora
2020-pregression to liver started piqray and faslodex
2022-progression in bone/increased back pain. Confusion. Found the bone progression and high calcium levels. Calcium was treated confusion improved. Started xeloda. Did brain MRI showed mets in skull which was new. 2 weeks after had mri of spine which showed extensive bone mets, no cord compression. Brain MRI was concerning for leptomeningeal disease. She is not experiencing any neurological symptoms just back pain. Starting WBR on 9/29 for 10 days with hippocampal avoidance. Continuing on Xeloda as her MO and RO stated it crosses the BBB. I know not to google things but of course do and see the awful stats on this diagnosis. I did join a facebook group and saw some encouraging stories. Her MO and RO didn't give us indication this was as serious as I have looked up. Both seemed very confident that the WBR and Xeloda will do its job and be successful. I appreciate their confidence I just wanted to hear some first hand stories. I know there is no cure but thats what we have been doing since 2015. prolonging until the next treatment is available. I appreciate any input.
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Mymomsvoice, are they going to do a spinal tap to see if it is lepto? Illimae, who is on the brain Mets forum and does have brain Mets, has had lepto scares a few times, but the spinal tap has been negative each time.
I have skull mets and have never had radiation. My mets are not in the brain as far as I know. I may ask for another brain MRI soon. It’s been a year and a half since I’ve had one.
I’m also on Xeloda, and I’m still covered in mets, but I’m pretty stable right now.
I’m thinking of you and your mom.
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kbl,
Thank you so much for the reply. I have read many of illimae posts on the brain sisters thread and after reading them questioned having the spinal tap myself. But I've also read post stating the spinal tap is not necessary to diagnose lepto. Her mri stated the findings were concerning for leptomenigeal disease. Her RO and MO who we love, acted like it was no big thing yet they needed to get the WBR started right away to stay ahead of it.
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KBL, I saw you post on this thread and thought you might be calling me out, lol
Mymomsvoice, yes, leptomenangeal disease is typically confirmed by a lumbar puncture, however, WBR would be the standard treatment for HER2 negative patients, especially if numerous tumors were seen on the MRI. WBR usually works well for some time, many months to years for some and if/when any other spots pop up, they can be treated with targeted radiation (if there’s not too many), which is a far easier treatment with a recovery time of just days. I’ve heard WBR can be rough with nausea and fatigue, the brain mets sisters thread has several posters who’ve been through it. Good luck!
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Mae, you are such an inspiration and my go-to when people have questions. You know so much more than I do about the brain. Thank you! You rock.
Mymomsvoice, I hope everything goes well for your mom. I’m not up on how the brain things work, but I will always go to Illimae if I have a question. Please keep us posted on how she’s doing.
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