I am new here but I am struggling for answers. My mother was diagnosed with stage IV small cell adenocarcinoma in February 2015. At a local hospital she was given 18 months to live. We seemed a second opinion at a cancer treatment center of America. She never showed any signs of cancer. She continued with normal activity and seemed to be the picture of health. She started tarceva orally in about April. She didn't have too terrible if the common symptoms and still did great. In February of this year, they asked her to stop the tarceva and they were going to start chemo intravenously. She had a port placed in late February. From that time forward, her confusion began. She started having terrible headaches, nausea, dizziness. After a lumbar puncture, they were able to determine that she had leptomeningeal disease. From about March 1 until now she has gone tremendously downhill and has been admitted into the hospital. A shunt was placed to drain the fluid that had collected on her brain. She doesn't eat, sleeps a lot, has even more confusion at various times. What am I to expect in the following days? Does anyone have any similar stories that can help answer some questions for me. I'm sure I am missing a lot of information here, but can try to fill in the blanks if you need me to. Thank you so much in advance.
Adneocarcinoma with mets to brain - 1273243
lorrystilley
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Reply # - March 14, 2016, 06:55 AM
Hello Lorry,
Hello Lorry,
Welcome to GRACE. I am so sorry to hear of your mother's diagnosis of leptomeningeal carcinomatosis. From personal experience, I know just how heartbreaking this complication is. It sounds as though she has been experiencing many of the typical symptoms of progressing LC, and what I would expect is increased weakness and more sleeping. Near the end, my wife was sleeping most of the time.
My thoughts are with you and your family at this very difficult time.
JimC
Forum moderator
Reply # - March 14, 2016, 09:12 PM
Hi Lorry
Hi Lorry
I'm so sorry to learn that your mom has LMC. Headaches and nausea are very common symptoms. As it progresses there are a host of other symptoms you should be prepared for but please keep in mind that each case has it's own unique characteristics. She may begin to shuffle her feet when walking because balance becomes a problem. I would recommend putting bed rails on her bed to prevent her from trying to exit the bed by herself. My wife fell twice trying to get up during the night and because her speech was affected she could not call for help. Since she is in the hospital she already has bed rails so just keep her there as long as insurance allows. Thought patterns also may get disrupted. She may develop double vision. She may develop incontinence. And as you said she will begin to sleep more and more.
Try to take advantage of any good waking moment to discuss her wishes and I would recommend getting some assistance to help with her personal needs as well as your own. Once again the hospital is the best place for her now. I would also start looking at hospice options, in case she gets discharged, as soon as possible, because it can progress rapidly. The social worker at the hospital can help you with that.
I wish I had better news for you but LMC is just plain terrible. There have been remarkable cases involving remission. The TV actress Valerie Harper comes to mind, but they are few and far between. I will pray for a miracle for you and your mom. I wish you both strength, peace and serenity.
Bob4Beth
Reply # - March 15, 2016, 06:57 AM
Thank you so much for your
Thank you so much for your replies. It is a terrible disease. The dr spoke with us yesterday briefly and said that the radiation and chemo was working and the cancer cells were diminishing. He said that her confusion may or may not come back. I wished that the drs were able to be more frank with us and let us know what we are facing. We are concerned with what we are going to do when she is released. I will speak to hospice, as you suggested. Again, thank you!
Reply # - March 16, 2016, 08:22 PM
Lorry
Lorry
I would like to clarify a few observations I made. When I said LMC can progress rapidly I did not mean weeks but more like months. My wife was diagnosed in May and passed away in September. Of course no 2 cases are exactly alike but I would set my horizon on 5-6 months of possible gradual deterioration. I pray it takes longer.
When I suggested contacting hospice that does not mean she has to be put on hospice right away. There are numerous factors to consider. We chose to fight it with pulse dosed Tarceva for as long as we were seeing positive results and this was contrary to our oncologists recommendation about 2-3 months in. I found it very difficult to make the hospice decision because I felt like we were giving up, but in time we realized the Tarceva was no longer working, she was having great difficulty even swallowing pills and was in the hospital more than out - so hospice became the logical alternative and it was the right way to go. What I really meant was that there are a number of choices out there when it comes to hospice such as (1) in home; (2) nursing home; (3) dedicated facility. Get your ducks lined up now while she is in reasonably OK condition because you don't want to go shopping when things turn for the worse. Your oncologist if he/she is any good will assist you in making the decision when it is the appropriate course of action.
All this being said I hope and pray all that I have said will never come to bear and your mom will be the next Valerie Harper.
Bob4Beth
Reply # - March 16, 2016, 08:35 PM
Lorry
Lorry
After reading my previous post I in no way intend to give you any kind of life expectancy. I only talk from my own experience and from what I have learned from others in similar circumstances. LMC is very difficult to even diagnose and can also behave unpredictably so please take my timeline with a grain of salt. Sorry.
Bob4Beth
Reply # - March 16, 2016, 11:33 PM
Lorry
Lorry
We have a similar journey. My husband also has lepto. He just finished WBR and has be on pulse-dose Tarceva. He will start intrathecal chemo (depocyt) this Friday. Do you mind telling me what kind of chemo your mom has? Best wishes to you and your mom.
Emily
Reply # - March 17, 2016, 06:34 PM
Bob4beth you in no way
Bob4beth you in no way offended me. I was searching for answers and your response helped me greatly. I understand everyone's diagnosis and prognosis are different. I appreciate your feedback. I apologize for not knowing what chemo she is doing currently. She was taking tarceva orally until they instructed her to quit so that they could start doing chemo through her port. At this time she is having radiation done on her brain. The Drs say that the cancer cells in the "fluid on her brain" are diminishing. I am writing in laymans terms because I have not dealt with cancer before and I don't understand a lot. I am able to login to her patient portal in order to see things spelled out and then I do my research from there. When she was admitted two weeks ago it was to start the chemo intravenously. At that time they discovered the lepto and decided to start with radiation immediately instead. They are now wanting to put her in a rehabilitation center to help get her strength back and transport her to the center for her treatments. I am mainly concerned with her being so far away, is it reasonable to want to get her closer to home? My sister, stepdad and I are taking turns making the 8 hour round trip all while trying to work and take care of our families at home. I know in her right mind she would want to be closer to home, but she cannot express that to us at this time.
Reply # - March 17, 2016, 08:00 PM
Hi Lorry
Hi Lorry
You certainly have some very legitimate concerns about the course of treatment being determined for your mom by her oncologists. It appears to me from your description that your mom's LMC has progressed rather significantly to require a shunt to drain off pressure. I'm a bit confused by the radiation approach because that method of containment was never mentioned by my wife's oncologist but from Emily's post I guess that is a line of attack used by some docs. I assume they are doing whole brain radiation as opposed to cyber knife which would only be effective individual brain mets which is not her problem. Anyway I'm not a doc and will not second guess their approach. I am distressed that the doctors are making decisions to hopefully extend your mothers life without consulting with you, your sister and step-dad. That you all must make an 8-hour drive only exacerbates the situation and yes your mom were she able to express herself may indeed agree that this is not an acceptable treatment plan. I would suggest a meeting of your family members and her oncologist as soon as possible to iron out these issues. They said that her cancer cell count is down but ask them what exactly they expect to accomplish and at what cost to her quality of remaining life. Do they really believe they can stabilize the LMC to the extent that she will be able to return home and have a reasonable quality of life? How much longer do they believe the WBR will give her in life expectancy and is it a reasonable course of treatment taking into account the side effects the radiation will cause? Would it not be better and more humane to bring her home and enter her in a hospice program if they do not indeed believe they can make a meaningful extension of her life without damaging her quality of life? You have a right as her family to be her advocates and they should not be making decisions without the input of her immediate family. Good luck Lorry and God bless. Bob4Beth
Reply # - March 17, 2016, 08:08 PM
Lorry - one last thought. Do
Lorry - one last thought. Do you have a cancer center within an hours drive of home where they can continue the present course of action or possibly suggest a different plan. Frankly her odds of survival are not good and I believe you must do what you believe would be her wishes and in the best interest of your family. Bob