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2nd Mets to brain occurrence

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JMJ View Drop Down
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    Posted: Jul 25 2019 at 2:20am
Hello! Itís been a long time since I have posted, I had nearly reached 5 years cancer free when I was diagnosed this past fall with a recurrence - a large brain tumor! I had a craniotomy that removed the tumor and speech therapy, OT and PT to rehab. I had cyberknife to the cavity/surrounding tissue in my brain, started Xeloda and was NED as of Jan! I was thrilled to receive that good news, and was hopeful the good news would continue while I continued with scans every 3 months. 

This week my brain mri showed tumors in the dura layer of my brain, itís been a bit of a blow. Iím getting in with my various specialty oncologists, first is my cyberknife dr. then surgeon. I donít believe I am a surgical candidate since there are multiple spots. We will see and weigh all the options. 

I will also see my medical oncologist, who does only breast cancer and is at a NCI/NCCN cancer center. My neuro onc said chemo and immunotherapy are options for part of my treatment plan. 

Iím still in a bit of shock over this, staying positive but still in disbelief that Iím dealing with brain Mets again. Taking it one day at a time helps. 

Anyone else with brain mets, or anyone that experienced that disbelief- like I didnít think any of this could/would happen to me. And now adjusting life to a new normal, while grieving a loss of the future I thought I was going to have. Even the summer I thought I was going to have! 

Support & encouragement appreciated. 
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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: Jul 25 2019 at 8:16am
Hi JMJ,

I'm so sorry you are dealing with this diagnosis again.  Since you almost reached the 5 year mark, I'm hoping it's slower growing and gives you more treatment options.  Also ask about clinical trials that might be available for you. 

Hugs,
Donna
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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Kellyless View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Jul 26 2019 at 1:05am
I can hardly believe it JMJ! I remember you were diagnosed right after having a baby? You've been thru so much, I am so very sorry you're going thru this now. I agree with Donna, your medical oncologist needs to find a clinical trial for these new mets. If he's at an NCI rated facility he'll have the ability to access everything, find a good option for you to do next. I heard today from another member that Dr. Joyce O'Shaunnessy here at Baylor in Dallas has limited her practice to BC mets patients only. I found that interesting. If there's anything you need that we can help with please let us know. You'll be in my thoughts every day, please check back in when you can.I
 Big hugs and warm healing thoughts coming at you, Kelly

IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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JMJ View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote JMJ Quote  Post ReplyReply Direct Link To This Post Posted: Jul 30 2019 at 3:04pm
Thank you Donna and Kelly, yes, my initial diagnosis was postpartum. True Donna that maybe since I was close to the 5 year mark that this could be slower growing. Thank you for the positive outlook. My drís are all working together in the planning of the treatment, and there is even a TNBC Mets study going on at one facility I am with!

I find it interesting about that dr that only treats Mets, I will look that up! Thank you! I have been researching online and am shocked at the stats for TNBC with brain nets. How do people research when these stats come up? I try to skip over them but it seems like my eye always catches them and reads them quickly. 
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