leptomeningeal carcinomatosis - 1290233

Tue, 02/28/2017 - 13:11

My mother passed away on 8/22/2016 due to stage IV non small cell adenocarcinoma and ultimately leptomengieal carcinomatosis. (I will include dates below so there is a clear timeline.)

On March 10, 2016 I realized my mom was acting odd, the best way I could describe it was spaced out and lethargic. I didn't think much of it I thought maybe she was taking too many sleeping pills at night or something. On March 15 she called me and told me that she had fallen (due to poor balance) and needed to get a X-ray of her wrist because she thought she had broken it. We went to walk in clinic who thought she possibly had COPD and was not getting enough oxygen which caused this fog she was in. That was not the case.
We followed up with her primary who ordered a chest X-ray and everything was clear. I knew something was wrong and insisted on a brain MRI. That was the day everything changed. They found multiple (they stopped counting at 30) lesions on her brain and she needed to be admitted to the hospital immediately to find out what was causing this, at this point they did not know the primary cancer. They were unsure what type of cancer it was since her chest X-ray was clear. After further testing, a nodule on her lungs were found and after a broncoscophy, it was confirmed that she had stage IV non small cell adenocarcinoma poorly differentiated. (Why was the chest X-ray clear if it was lung cancer? She did have a bit of a lingering cough but nothing that was alerting. She has multiple chest X-rays that all came back clear. She was having incontinence problems since at least October 2015. I wonder if this was related or just a coincidence)

She was impatient for 10days while they developed a plan of care and she began whole brain radiation on 3/25 and it ended on 4/7 for a total of 10 sessions. By the end of April she was "coming out" of the fog a bit and seemed a little bit more like herself. She began chemo on 5/2/16 wth a mixture of carboplatin, alimta and avastin every

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lauren41491

every 3 weeks. All scans showed nothing was shrinking but also not growing so they continued that for 4 rounds until I started to notice her gradual decline and extreme dizziness starting about 7/6. We saw her regular oncologist on 7/7 where scheduled for chemo but her counts were slightly low so they rescheduled us for 7/28 hoping to try chemo again but she kept declining so both chemos were postponed and they ordered another brain MRI which was suspicious for leptomengieal disease. She experienced a gradual decline and extreme head pain that only worsened.
I googled too much and I KNEW she had the cancer in the spinal fluid. Every single item matched. (Unsteady gait, incontinence, new confusion, extreme pain)
On 8/2 we met with the neuro oncologist who did a spinal tap to test the fluid to see if she found any relief from the pain and to test the fluid for the suspected disease. by 8/3 we knew it was positive. By 8/4 she was in excruciating pain and could barely walk (extremely weak and wobbly) and I had to take her to be admitted to the hospital to control her pain, I was concerned if I waited another day or two she wouldn't be able to walk at all.
They told us there was really nothing they can do besides try to put a shunt in the brain to reroute the extra fluid to her stomach and relieve some of her terrible pain. They spoke of chemo slightly but insisted it is not very effective and very hard on the body, they would not recommend it. (Looking back I wonder if they had suspicions of these things before they told us details and that's why more care was not offered) My mom expressed before she got too ill that she wanted to live a life of quality over quantity so we opted to not go the chemo route as we knew it would not cure her. We wanted to enjoy the last time that we had left.
On 8/7 we had a huge scare. That morning her sodium was slightly low and she was in extreme pain. They gave her dilaudid, did a spinal tap and immediately she was unresponsiv

lauren41491

she didn't know who I was, shaking uncontrollably and could hardly be woken up at all. They thought maybe it was the dilaudid (which she never had before) so they reversed that medication - which did not work. They tested her sodium again and it was dangerously low. My question is, I am no medical doctor but I really felt the trigger was the spinal tap, and not the sodium, could it have been the sodium? It all started within minutes of the spinal tap...it was to much of a coincidence that the sodium would have caused this right after the spinal tap...?!? She was moved to ICU and monitored closely for seizures and scanned for bleeding/strokes but nothing. They were truly stumped. We had to meet with kidney specialists who monitored the sodium increase slowly by IV but each day it kept dropping as soon as they turned it off. Finally they regulated it and she was off the IV but put on tablets when she was finally somewhat coherent enough to take.

She had the shunt placed on 8/11 which was flowing properly but unfortunately did not relieve her pain as we had hoped. She was released from the hospital on 8/19 and moved to in patient hospice where she passed away on 8/22. She walked (barely but still walking) into the hospital on 8/4 and passed away just 18 short days later.

During my moms disease I really felt she was receiving the best care possible (despite a few issues with slight lack of communication, which unfortunately stemmed from them not seeing the leptomengial cancer very often) but now I look back and wonder how it all happened so quickly. Does this disease generally progress THAT quickly? We were on vacation at the beach having a great time on 7/6 and less than 1 month later by 8/4 she could barely walk. Is it likely that she had the cancer in the spinal fluid since the very beginning and it was just never caught? Or is it likely that it started after?
I know that thinking "what if" will not change anything but I want to understand the situation fully an

JimC

Hello Lauren,

Welcome to GRACE. I am saddened to hear that you have lost your dear mother to lung cancer. Many of us here have experienced the same heartbreak and doubts that you have. As you can see from my signature below, my late wife was diagnosed with leptomeningeal carcinomatosis, and like your mom, the condition progressed very rapidly. Tragically, there is a lack of good treatment options for LMC, so rapid progression of symptoms and disease is common.

With regard to another of your questions, because of the greatly reduced resolution and two dimensional nature of a chest x-ray, it is not at all unusual for an x-ray to fail to image a small lung nodule. For that reason, most oncologists rely on CT scans rather than x-rays for follow up after treatment begins.

I too second-guessed treatment decisions after my wife passed, even though my wife's oncologist was excellent and I was a well-informed caregiver. The loss of a loved one to cancer is difficult to accept, and it's natural to think (or wish) that something better could have been done. But cancer is a tough foe, often stronger than our best interventions. I hope that as time passes, acceptance will become a bit easier for you.

JimC
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