HonCode

Go Back   HER2 Support Group Forums > Caregivers Corner
Register Gallery FAQ Members List Calendar Search Today's Posts Mark Forums Read

Caregivers Corner Dedicated to those who support their loved ones.

Reply
 
Thread Tools Display Modes
Old 08-31-2009, 08:41 AM   #1
ellzmom
Junior Member
 
Join Date: May 2009
Posts: 4
Mom's Mets Battle Continues...Brain Mets??

The saga continues. The 2.5yr BC battle for my mom wages on intensely:
- Initial dx: stage 1, grade 3, er-/pr-/her2 equiv(FISH 2.0).
- First chemo round (don’t recall drug) plus radiation cleared the left breast
- Started Herceptin
- Emergency room visit for SOB was a malignant pleura and subsequent pleural effusion
- Herceptin didn’t work – (Her Onc insistes mom’s HER2+ ; Herceptin requires at least a FISH 2.0 score)
- Started Navelbine
- Emergency room visit for second pleural effusion
- PET scan found nodules in pleura
- Started Tykerb/Xeloda
- Another ER visit for constant coughing and mid-section pain turned out to be left lung Mets – Tykerb/Xeloda didn’t work
- Started current round of Abraxane/Avastin (A/A) and remaining on Tykerb
- As of today (8/30/09), mom is in the hospital for sudden loss of memory, balance, disorientation, lethargy (lays in bed with eyes closed, maybe sleepiness). She doesn’t initiate conversations but responds to questions, incorrectly mostly (very poor memory recall). A brain CAT scan was clear but an MRI pointed to an ‘abnormality’ in the brain membrane/lining. No mass(tumor, etc) was found. Her doctors, including the Onc, ordered a spinal tap for this Monday, to break the tie or look for METS. A physical and psychological evaluation was also done but nothing else.
- The sudden change started last week (8/21/09), following an Avastin treatment, the last in her 3-on/1-off cycle. It started with headaches and dizziness which we thought were more side effects from the A/Avastin. But we rushed her to the ER when she started falling and being disoriented with a loss for words.
- So I ask, could her condition be ‘chemo-brain?’ Is it too much Tykerb (she’s been on the 1250mg Tykerb dosage a long time)? Does she just need a break from all this chemo? Or could it be brain/spinal fluid METS?
- Mom is currently not the person we knew just a week ago and it’s driving us crazy to see her in this somewhat vegetative state despite no paralysis anywhere. She’s just lying in the hospital with nothing being done – I guess waiting on the spinal tap.
- I can’t stop asking ‘What could it be?’
ellzmom is offline   Reply With Quote
Old 08-31-2009, 09:05 AM   #2
Faith in Him
Senior Member
 
Faith in Him's Avatar
 
Join Date: Jul 2007
Location: Northern California
Posts: 764
Re: Mom's Mets Battle Continues...Brain Mets??

I am so sorry that your mom has had such a difficult battle. I do not have any advise but please know that I am praying that you have answers soon.
__________________
DX 02/01/07
2.5 cm, Er/Pr-, Her2+++
18/20 Nodes
03/07 CT & Bone scan - Clear
AC x 4, Taxol x 4, Added Herceptin
Radiation until 09/07
Herceptin every 3 weeks until 06/08
01/10/08 local recurrence -IBC
01/28/08 CT & Brain MRI - clear
02/08 - Navelbine & Herceptin
05/08 -MRM
05/08 - Gemzar & Herceptin - didn't work
09/08 - Hyperthermia rads
03/09 - Tykerb/Xeloda
05/10 - Tram flap to fix wound
Faith in Him is offline   Reply With Quote
Old 08-31-2009, 07:19 PM   #3
Jackie07
Senior Member
 
Jackie07's Avatar
 
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
Re: Mom's Mets Battle Continues...Brain Mets??

'Mom is in the hospital for sudden loss of memory, balance, disorientation, lethargy (lays in bed with eyes closed, maybe sleepiness). She doesn’t initiate conversations but responds to questions, incorrectly mostly (very poor memory recall). A brain CAT scan was clear but an MRI pointed to an ‘abnormality’ in the brain membrane/lining. No mass(tumor, etc) was found. Her doctors, including the Onc, ordered a spinal tap for this Monday, to break the tie or look for METS. A physical and psychological evaluation was also done but nothing else.'

Sorry that your Mom has experienced problems. You all had done the right thing to take her to the ER. I am sure doctors will figure out what's going on make correct diagnosis and treatment. We'll be keeping you in our prayers. Please keep us updated.
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

Advocacy is a passion .. not a pastime - Joe

Last edited by Jackie07; 08-31-2009 at 07:22 PM..
Jackie07 is offline   Reply With Quote
Old 09-10-2009, 08:35 PM   #4
ellz
Guest
 
Posts: n/a
Re: Mom's Mets Battle Continues...Brain Mets??

Update:
Mom’s spinal tap came back positive with brain mets – they’re calling it meninges cancer. Mom’s symptoms were vomiting, headaches, loss of memory and balance. To make matters worse, she was given too much Decadron (4mg every 12 hours) which caused delirium and insomnia ( steroid psychosis) for three days. This wore off but Mom’s still in the hospital (16 straight days) and back on 2mg of Decadron once a day in the morning, which is alleviating some of the head pressure, we’re told.

Currently mom is extremely weak, bedridden and not talking, unless asked a question. She also sleeps well and seems to have awareness of her surrounding.

Since she’s only able to lie on her sides due to head pains when on her back, her radiologist said mom would need anesthesia in order to remain motionless for total brain radiation treatments. Also, the resident Doc in her care has all but pronounced her dead and wants to literally (it seems) kick her out with no radiation, and to a hospice.

At first the radiologist agreed to begin the 10-day cycle of radiation but recently changed her mind, concurring with the resident Doc that radiation will not be beneficial since she only has ‘months to live’; the radiologist was obviously influenced by the resident Doc.

Should we demand radiation treatment or get mom to another hospital?
We just wanna give mom a fighting chance.

-ellz
  Reply With Quote
Old 09-10-2009, 09:19 PM   #5
ElaineM
Senior Member
 
ElaineM's Avatar
 
Join Date: May 2006
Posts: 3,142
Wink Re: Mom's Mets Battle Continues...Brain Mets??

I have my fingers crossed for your Mom's improvement.
__________________
Peace,
ElaineM
12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
http://her2support.org/vbulletin/showthread.php?t=52807
14 Year Survivor
http://her2support.org/vbulletin/showthread.php?t=57053
"You never know how strong you are until being strong is the only choice you have." author unknown
Shared by a multiple myeloma survivor.
ElaineM is offline   Reply With Quote
Old 10-14-2009, 04:55 PM   #6
loveher
Senior Member
 
Join Date: Jun 2008
Location: NY
Posts: 81
Re: Mom's Mets Battle Continues...Brain Mets??

Hi Ellz,

how big is the tumour. could cyberknife be an option?
just know that whole brain is quite taxing. You should definently fight to get treatment for your mom though.
Is it possibble for you to get a second opinion.

best wishes
-Sue
__________________
Hi i'm Sue. I've been part of the her2support family since 08'. My amazing mother Hong was her 2 stage IV 9 years and bravely earned her wings, I still love this board and continue to her fight. Plz reach out if you want to connect:)
loveher is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump


All times are GMT -7. The time now is 08:36 PM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2024, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007 - 2021
free webpage hit counter