My Mom with NSCLC and possible Leptomeningeal Carcinomatosis - 1254429

ntai
Posts:3

My Mom has passed away for 2 weeks now. Although it's still difficult to re-live what happened, I really felt the urge to write on this forum to share with you her experience. My Mom has been diagnosed with NSCLC since May 2012. She was already in stage IV with spread to lymph nodes, neck bones, brain and leptomeningeal metastasis . She took 1 Iressa (equiv to Tarceva in Asia) a day since then, and she regained her energy and can eat and communicate very well for about 5 months, but she still couldn't walk anymore as it seems she can't balance herself. Things start to deteriorate more in November when she started to have more hearing loss, facial drooping, slurred speech, and incontinence. The doctor cannot tell us why she was experiencing that as her CT scans showed shrinkage. Situation turned for the worst when she can't really eat or swallow anymore and slept most of the day. I was completely lost at that time on why this was happening until I found this site where I read about leptomeningeal carcinomatosis (LC) and its symptoms seem to match my Mom's situation so much. We took her in the hospital so she could get IV for her dehydration. She started to develop a fever and the Dr. said that she were left with days. The Dr. agreed with me her rapid decline could be due to LC but they said it's not worthwhile to do further diagnosis at this point nor to try the high dose Tarceva as I learned from the site. They have stopped all medicine except for med to control her fever (from pneumonia). Finally, after 7 days, she passed away very peacefully in the middle of the night. She didn't have any pain at all or too much struggle in breathing, her breath just came longer and longer in between and eventually stopped. It was very sad but then at the same time, we knew she is in a much better place in heaven where there will be no more fear and pain from cancer. Every situation is different so although I am not sure how much this sharing will help I hope that

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Reply # - March 3, 2013, 01:05 PM

certain spring
Posts: 762

I am so sorry about your mother. I'm glad that the Iressa allowed you a bit of extra time with her. Thank you for sharing your sad and difficult experience. Best wishes in coping with your grief and for the future.

Reply # - March 3, 2013, 04:06 PM

Dr West
Posts: 4735

ntai,

Please accept my sincere condolences. Thank you for writing in to share her and your story, which is very sad and all too familiar. It is difficult not being able to change the big picture, but I think it helps to have a better understanding of what is likely to be happening to help make sense of things. I suspect you sharing your story will help others in this way.

I hope we can at least provide the comfort that there are others who understand what you have been going through.

-Dr. West

Reply # - March 4, 2013, 10:59 AM

noelle54
Posts: 7

I am so very sorry for the loss of your mother. Peace be with you and your family at this difficult time. My father passed away in October after a 3 year battle with NSCLC. Just over 2 years and 4 months into the battle, and after tolerating chemotherapy very well and having surgery to remove some new sights that popped up after two years, he was diagnosed with brain mets and possible LC. His speech had begun to slur, he was feeling dizzy...the taste in his mouth became awful. The symptoms progressed from there for the next 8 months until his death. He underwent WBR for his brain mets...which shrunk them to nothing but the side effects were awful like dry mouth and dry eyes. He was a barber for all of his life...with a great head of silvery-black hair. And miraculously, a few months after the radiation and until his death, it grew back a beautiful texture and very black! It was one good thing in a mountain of bad that we would comment on all of the time. He lost his ability to smile in one side of his face, then progressively, the other. Soon he couldn't walk which is when we admitted him to the hospital. His LC was diagnosed and he was sent home to my house to rest and spend the rest of his days as comfortable as possible. Like your mom, he was in no pain. He became completely incontinent. He died very much like your mom, peacefully..with the whole breathing thing...and his children and my husband were there when he took his last breath.

I think we were confused because his last brain scan came back with no sign of LC or brain mets. Everything had shrunk down to nothing. Our doctor finally told us that even though the brain scan came out looking good, some of the cells can escape to the spine.

I still take comfort in knowing that he wasn't in any pain. Even when he was not able to do anything for himself for the last 2 weeks of his life, he was able to at least shake his head or move his mouth "no" when I asked if he was hurting.

Again, peace be with you...

Reply # - March 4, 2013, 04:36 PM

laya d.
Posts: 714

Dear Noelle and ntai:

I'm so very sorry for your losses and am walking in both of your shoes. I lost my Mom in December and am at a loss every morning when I wake-up and realize that she is gone. I hate cancer!

Laya

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