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12-12-2014, 07:53 AM
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#1
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Member
Join Date: May 2014
Posts: 16
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Cerebellar Craniotomy
My wife has brain mets and we have gone the WBR, Gamma knife Tykerb route. We are signing up for the Neratinib clincal trial. Last week she started showing alarming symptoms and we found out that tumor growth had closed her 4th ventricle, causing hydrocephalus.
Her options were to do nothing and die in a few weeks or have a Cerebellar Craniotomy to get some of the tumor out to buy some time.
She had the surgery Tuesday, and it was scary seeing her being so ill. After 2 days in thje nuero ICU, they got her in the room last night.
This morning, she woke up and was hungry. She is back. It is a miracle. We are so relieved. She goes home Saturday or Sunday.
My take away-
-Women are stronger than men
-if you don't know if you should quit, then keep going
-We live in the age of miracle and wonder
Thanks for letting me vent.
Last edited by catalina; 12-12-2014 at 04:20 PM..
Reason: correct spelling
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12-12-2014, 08:53 AM
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#2
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Senior Member
Join Date: Feb 2014
Location: Minnesota
Posts: 184
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Re: Cerebral craniotomy
So glad to hear she is doing better. So good for her to have you as a support.
Keeping you both in my thoughts
Lisa
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12-12-2014, 09:36 AM
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#3
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Senior Member
Join Date: Jun 2011
Location: Somerset, NJ
Posts: 487
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Re: Cerebral craniotomy
What a rollercoaster ride! I'm so glad you got your miracle. Here's to the Neratinib trial being more of the same.
__________________
2/6/09 Core needle biopsy: negative; Mammos through 2010: no change
3/30/11 Pea-sized lump in left breast at site of prior biopsy; mammo negative, sonogram not so much
4/14/11 Core needle biopsy: negative for cancer
5/18/11 Excisional biopsy 1.2 cm tumor, LVI, positive margin; ER+60%,PR+20%,HER2/CEP17 5
6/15/11 BMX: Left DCIS & LH; Right ADH; SNB: 2/3 nodes: 1.4 cm and 1 mm; ALND L1&2: 0/10; Stage IIa, Grade 3
7/14/11 CT/Bone scans NED; MUGA 66%
7/19/11 Biweekly dd AC w/Neulasta; done 8/30/11
9/13/11 Transfusion (Hemoglobin 8.6); MUGA 64%
9/20/11 Start Taxol + Herceptin; Taxol done 12/6/2011; continue Herceptin until 9/4/2012
12/27/11 Radiation - 6 weeks; 2/27/2012 - DONE! Yayyyy!
2/29/12 Start Tamoxifen 20 mg/day; continue until 2/28/17
5/16/12 Start five-years Metformin trial
6/19/12 MUGA 61%
8/21/12 Brain MRI NED (head still hurts, brain still fogged)
9/4/12 Herceptin done!
9/6/12 Port out!
7/11/13 Aricept 5mg for cognitive impairment; increased to 10mg as of 8/23/13; back to 5mg 12/2013
5/2014 Add Namenda 7mg
9/2014 Stop Aricept and Namenda; Neuropsychological evaluation
10/24/14 Start cognitive rehabilitation therapy
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12-12-2014, 01:25 PM
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#4
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: Cerebral craniotomy
What a brave fighter your wife is, no doubt she is helped enormously by having you to support her, my best to you both.
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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12-14-2014, 04:24 PM
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#5
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Senior Member
Join Date: Nov 2014
Posts: 83
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Re: Cerebral craniotomy
How is your wife? Keep us posted.
Forher (husband)
__________________
June 2013 DX Stage 3 Idc, rt breast, er/pr-, her2+++
PET/CT/Brain MRI clear
ACTHP until Dec 2013
BMX Dec 2013
28 Rads Feb 2014
Exchange surgery June 2014
Herceptin end Sept 2014
Headaches start Oct 2014
CT body clear Nov 2014
Brain MRI 4 lesions Nov 2014
SRS via LINAC in Dec 2014
Rt side infection, hospitalized, lost right implant on Jan 1, 2015
Jan 14 2015 MRI brain lesions shrinking
Jan 27 2015 Re-start herceptin every 3 weeks
Feb 2015 CT/PET Body clear
Re-start Lymphedema treatment April 2015
Breast MRI clear April 2015
Brain MRI April 2015 - shows everything stable, nothing new (whew)
CT scan June 2015 - clear
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12-15-2014, 10:32 AM
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#6
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Member
Join Date: May 2014
Posts: 16
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Re: Cerebral craniotomy
Thanks for asking. Surgery went well. She was in Nuero ICU for 2 days, then to her own room. We got her home on Saturday. She has significant gait/balance issues and has some significant PT coming. We have relatives staying with her so I can keep my job.
We are hanging on, but just barely. I had no idea how impactful this surgery would be. They don't seem to tell you that before hand and we asked specifically about recovery strategies.
The clinical trial meeting is in 8 days so we shall see how it goes.
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12-15-2014, 11:17 AM
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#7
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Senior Member
Join Date: May 2006
Location: Haarlem, the Netherlands
Posts: 835
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Re: Cerebral craniotomy
It sounds like a very rough ride. Glad to hear you have relatives who can help out. I hope she recovers and gets on the trial. Brain surgery is not for the weak of heart. You two must be some tough cookies and your wife is lucky to have such a supportive husband.
I wish both of you strength and courage and time to make more good memories.
Jacqueline
__________________
Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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12-16-2014, 03:42 PM
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#8
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Senior Member
Join Date: Jun 2011
Location: Somerset, NJ
Posts: 487
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Re: Cerebral craniotomy
Having taken the other thread off-topic, I thought I'd mitigate a little by bringing my response back to this thread. 
Yeah, the doctors will drive you crazy that way. They never seem to tell patients what to expect. I think it's because they're not entirely sure what to expect, and they don't want to frighten us with all the possibilities.
What my neuropsychologist also said is that neurosurgeons, in particular, seem to have a skewed perception of reality: "You can walk, you can talk, go live your life." Uh huh.
It's still very early in her recovery, and from reading other accounts, this will pass. For now, please consider looking into neurocognitive therapy for your wife. A TBI center will have many resources and services that can help her recover more quickly.
If it were me, though, I would point out to the doctors that it was less than helpful not to be warned about what to expect. A little venting might be good for the soul, and perhaps if a similar situation arises in the future (although I hope not), they will be a bit more careful to offer a more complete explanation of what you can expect.
Please keep us posted about how she's doing.
__________________
2/6/09 Core needle biopsy: negative; Mammos through 2010: no change
3/30/11 Pea-sized lump in left breast at site of prior biopsy; mammo negative, sonogram not so much
4/14/11 Core needle biopsy: negative for cancer
5/18/11 Excisional biopsy 1.2 cm tumor, LVI, positive margin; ER+60%,PR+20%,HER2/CEP17 5
6/15/11 BMX: Left DCIS & LH; Right ADH; SNB: 2/3 nodes: 1.4 cm and 1 mm; ALND L1&2: 0/10; Stage IIa, Grade 3
7/14/11 CT/Bone scans NED; MUGA 66%
7/19/11 Biweekly dd AC w/Neulasta; done 8/30/11
9/13/11 Transfusion (Hemoglobin 8.6); MUGA 64%
9/20/11 Start Taxol + Herceptin; Taxol done 12/6/2011; continue Herceptin until 9/4/2012
12/27/11 Radiation - 6 weeks; 2/27/2012 - DONE! Yayyyy!
2/29/12 Start Tamoxifen 20 mg/day; continue until 2/28/17
5/16/12 Start five-years Metformin trial
6/19/12 MUGA 61%
8/21/12 Brain MRI NED (head still hurts, brain still fogged)
9/4/12 Herceptin done!
9/6/12 Port out!
7/11/13 Aricept 5mg for cognitive impairment; increased to 10mg as of 8/23/13; back to 5mg 12/2013
5/2014 Add Namenda 7mg
9/2014 Stop Aricept and Namenda; Neuropsychological evaluation
10/24/14 Start cognitive rehabilitation therapy
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