Mom's Mets Battle Continues...Brain Mets??

[ellzmom]

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?’

[Faith in Him]

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.

[Jackie07]

'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.

[ellz]

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

[ElaineM]

I have my fingers crossed for your Mom's improvement.

[loveher]

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