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Lepto mets

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atlhoosier View Drop Down
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    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?
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 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Meadow Quote  Post ReplyReply Direct Link To This Post 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 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote parrynd1 Quote  Post ReplyReply Direct Link To This Post 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.
Dx TN IDC 9/016 Age 28, Stage 3c, Grade 3, 4.5cm, .7cm, 1/5 Nodes, BRCA -, KI-67 >90%, 6/6 I-Spy 2, 4/4 rounds DD A/C, Lumpectomy w/reduction, 3 nodes removed, weekly Taxol/Carb1/12
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Sep 14 2018 at 12:23am
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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