New to this site but it helped me understand why......... - 1243671

gloriasdaughter
Posts:3

My mother passed away on May 12, 2012. She was nsclc lung cancer patient whose cancer had metastisized to her brain. She was initially diagnosed on Oct. 31, 2010. Went through brain radiation and chemotherapy. Her cancer went into remission then came back in Nov 2011. She went through another round of chemo, and it went into remission again. Her body began to fail her with her gait leaning to the right, confusion, dizziness, headache, hearing loss,, incontinence. We were told all these were effect of the radiation because she had extensive radiation and chem fog. I kept tellin them it had to be something else because there were times when she would come back to us (meaning her mind would come and go) and she would be just like hersself, but she would leave us a lot too. When she was diagnosed cancer free the second time we told them we wanted a break from the chemo because she was tired and really not altogether there. She had been on maintenance chemo in between the full dose chemo for almost a year and a half. She had begun to get a stiff neck, had to wear diapers, couldn't control her body, she could not communicate no matter how hard she tried she could not speak, total confusion. My mother could not feed herself, drooping of the left side of her face and became bedridden. The physician turned us over to hospice and six weeks later she was gone. the night before she passed awat our hospice nurse told us it did not make since to her why my mom was in the condition she was in because six weeks prior she given a cancer free diagnosis. I searched the google engine which brought to your site. Leptomeningeal carcinomatosis. It had to be. When I mentioned to the hospice nurse when whe came to my mother's wake. She said it had to be also and she was going to tell the other staff about it in the next meeting. GRACE was God sent because I knew my mother wasnt making things up and it gave me and sister closure in knowing that it was real. The symptoms are real. I feel as though more research should be done on this. I promised myself and my mom that it would be goal in life to help other cancer patients know that the symptoms are real and should not go unnoticed. I want to know how I can help spread the word about LC please. I will give me some sense of purpose because I could not help my mom.

Forums
Full Archive

Reply # - May 23, 2012, 08:40 PM

Dr West
Posts: 4735

I am very sorry about your mother. I agree that her situation sounds very, very much like meningeal carcinomatosis. I do believe that we'll see more research and, I hope, some progress on this in coming years, partly because we are recognizing it better, and partly because more of our patients are living long enough to experience it.

I am glad to think that we could provide some better understanding and closure for you and your family.

-Dr. West

Reply # - May 24, 2012, 01:26 AM

certain spring
Posts: 762

gloriasdaughter, I am really sorry to hear about your mother. It must have been extremely difficult and upsetting for you and for your family.
I wanted to draw the doctors' attention to what you said at the end of your post, about helping spread the word. I think it's a very positive reaction to your mother's suffering, and applaud you for that. As you know the doctors here have written quite extensively about leptomeningeal disease. One way of helping them continue this work of getting information out into the lung cancer community might be to consider a donation to GRACE (http://cancergrace.org/donate). Thank you for posting, and very best wishes for the future.

Reply # - May 24, 2012, 08:05 AM

catdander
Posts:

Gloria's daughter, I'm so sorry that you've lost your mom. I can imagine that difficult doesn't begin to define the time leading to her death. It's not the way we want our loved ones to leave.
I think helping get the word out so others don't go through what your mom and family went through is a good way for you to honor your mom. A cure for LC is unlikely any time soon but certainly knowing what's happening makes it easier for the medical community and family to help keep a person with LC comfortable and help all involved to manage and sort emotions. GRACE is educating a large number of people who look for answers on the web. Like Certain Spring I think Grace is worthy of help to maintain the level of education being offered, found, and had.

I don't think so but was your mom gloria from Pittsburgh? She is a member on Grace whom we haven't heard from in a few months.

Thinking of you and your family. Whatever you decide to do I think it will help you find peace.

Janine

Reply # - June 7, 2012, 11:56 AM

marisa93
Posts: 215

I am very sorry for the loss of your mother. This site truly is a wonderful place and I am glad that you found it and feel it helped give you some closure. I felt this site was a blessing to me and my husband as we were on his lung cancer journey. Thinking of you and your family during this difficult time.

Previous PostNext Post