Feb 07, 2013 - 9:45 pm
My wife is 41 years old, we have a 20 year old and a 5 and 6 year old. My wife had just started teaching again back in August 2012 since our youngest ones were in K4 and k5. She had just passed her Praxis in Chemistry and Biology and was working on SPED certification and a MS degree.
A few weeks into her new job she started having symptoms which included her world spinning uncontollably for hours at a time. These became more severe and made her unable to even sleep lying down. After many ER visits, two ENTs diagnosed her with positional vertigo and gave her head exercises to perform. After these had no effect, other than making her symptoms worse, the last one finally ordered a head MRI just to rule out tumors.
Well surprise, surprise, the MRI found 2 "lesions", that's the word they used before they mentioned the "C" word. The bad one was about 21x18mm in her cerebellum near her brain stem, pressing on the ponds and partially blocking her 4th ventricle. This was the one that had her living in hell. The other was in her cerebrum and measured about 5mm. The ENT said he had lots of experience with these types of tumors and that he was sure it was metastasized from somewhere else in her body.
He immediately ordered a CT of her chest/abdomen and found a couple of small nodules in her lungs and some enlarged lymph nodes in her chest. We then went on a hunt for some easily accessible tissue to biopsy. She had a mammogram and two suspicious lumps were biopsied and found to be nothing. An unusual mole on her back was also tested with no cancer present. The next biopsy was to be a lymph node under her right arm, but the surgeon was afraid to anesthetize her because of the large tumor in her brain. She suggested a neuro consult. All this took place over about a month.
The surgeon sent her MRI report to the neurosurgeon on that Friday and we had an appointment on the next Monday. He said you should have been here a month ago, and scheduled surgery to remove the large tumor two days later on Wednesday. The surgery went great and he got all of the tumor. After pathology from the tumor, it was determined it was adinocarcinoma, NSCLC. She spent 2 1/2 days in CCU and a week total in the hospital. A week or two later she was readmitted because she was leaking CSF from her incision. That was another week in the hospital.
We met with an oncologist in the hospital. He and her surgeon recommended whole-brain radiation followed by chemotherapy. Having read bad things about whole-brain, we did some research and she opted for a Gamma Knife treatment. Seven hours on a Friday morning and she was done with radiation. They treated her remaining small tumor, grown to about 8mm by now, and the site where the surgeon had removed the larger one.
She got VAD port and took 6 chemo treaments (carbo/taxol) thru it until it became infected and she ended up in the hospital for 5 days with staph in her blood. They removed the port and she opted not to get another one.
Being about 3 months since Gamma Knife, they ran another set of scans, MRI of the head and CT of the chest/abdomen. The MRI showed the small tumor was shrunk to about 1/3 of it's original size, there was only scar tissue around the other site, and no new tumors!!! The CT showed her lymph nodes and nodules in her chest were all shrinking.
She just re-started chemo with 4 or 5 more treatments to go, hopefully her veins will hold out. She says sticking her vein hurts much less than when they used her VAD.
We requested molecular testing before Jan 1, because we had gone catostrophic on our insurance for 2012. Just got the results back today, but haven't had the doc spell it out yet. Doesn't make much sense to me, but I will post the interpretation sections here just in case they mean anything to anyone.
Lung Cancer, ALK (2p23), FISH, Ts
- No rearrangement of the ALK gene region was observed; however, 100% of nuclei had 3-6 intact copies of the ALK FISH probe. The clinical significance of multiple intact copies of the ALK gene region in lung carcinoma is unknown.
EGFR Gene Mutation Analysis, Tumor
- Wild type
- Basically said there was no sign of EGFR mutation and so no related therapies would be helpful