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atlhoosier
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Joined: Feb 18 2014
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Points: 46
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Topic: Lepto mets Posted: Aug 23 2018 at 2:31pm |
Anyone living with leptomeningeal mets? If you are not familiar with this, it is when the cancer has spread to the fluid/lining around the brain. I have not been officially diagnosed with it, as I just found out on Friday that I have brain mets and have started whole brain radiation this week (3/10 complete). My radiation oncologist is very suspicious of 2 spots and has sent my info to get reviewed to set-up an appointment to confirm the lepto mets.
Just wondering if you have it, do you have the port in your head and what kind of chemo are you receiving for it? And, what are the SE like?
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DX Jan 2014, 37yo TNBC, Stage 2A, 4 tumors, BMX Aug 2014, clear margins
2017 - Mets to lung (single nodule) & sacrum 1st line(current): clinical study w/ taxol & reparixin (may be placebo)
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Meadow
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Joined: Apr 22 2017
Location: seattle, wa
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Points: 88
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Posted: Aug 23 2018 at 4:27pm |
I can't answer your questions, but I wanted to note that I've seen news stories that actress Valeria Harper has lived a long time with leptomeningeal mets from lung cancer.
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parrynd1
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Joined: Feb 28 2017
Location: California
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Posted: Sep 13 2018 at 1:11pm |
Found out recently that what I thought was brain mets (found around 2/2018) were mets to meniges, but Med onc said it isn’t LM. I’m still trying to understand all the differences between brain, LM, and just meningeal mets since it seems lik such a particular type/area to treat and have the cancer spread to. As far as treatment I had a craniotomy to remove a solid tumor growing off a blood vessel and 1 round of radiation. Currently doing Immunotherapy with one suspicious spot in the dura we are watching. Not sure if this helps, but you aren’t alone in dealing with a brain related TN met.
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Dx 9/016 Age 28, 3c, Grade 3, 1/5 Nodes, BRCA -, KI-67 >90%, I-Spy 2, DD A/C, Lumpectomy w/ 3 nodes removed, TC, Rads 2/2018 recurrence + brain & lung mets, Craniotomy, SRS, IPI-549, Opdivo/Avastin
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123Donna
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Joined: Aug 24 2009
Location: St. Louis, MO
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Points: 13509
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Posted: Sep 14 2018 at 12:23am |
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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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JMJ
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Joined: May 27 2014
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Points: 41
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Posted: Aug 14 2019 at 10:12pm |
I know this is an older post but just wondering any updates, how was the immunotherapy?
JMJ
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