Stage 4 Lung Cancer

4weeds

My dad was diagnosed 2 mo ago with st 4 lung cancer, now they think he has leptomeningeal disease. Has anyone had experience with this? We don't know what to think, we could use some input. Thank you!!

reinstones1

Hi-- I don't know much about leptomeningeal disease, other than what I've read about it. My Mom has Stage 4 lung cancer. I just wanted to say hello, and welcome to the board-- I hope you and/or your Dad will find this to be a place of hope and comfort!

4weeds

reinstones1 said:

Hi-- I don't know much about leptomeningeal disease, other than what I've read about it. My Mom has Stage 4 lung cancer. I just wanted to say hello, and welcome to the board-- I hope you and/or your Dad will find this to be a place of hope and comfort!

Thank you so much for your reply, I really appreciate it! When was your Mom diagnosed, how is she doing? I would also love to hear how you are coping with having a parent with advanced lung cancer, I think I'm still in a bit of shock.

kaitek

4weeds said:

Thank you so much for your reply, I really appreciate it! When was your Mom diagnosed, how is she doing? I would also love to hear how you are coping with having a parent with advanced lung cancer, I think I'm still in a bit of shock.

Hi 4weeds,

I didn't respond to your message the first time as I was clueless what leptomeningeal disease was. But where it concerns stage 4 NSCLC, then I am becoming more informed about that.

If I may share with you in how we've dealt with my mom's advanced cancer, it is natural to be shocked, devastated and saddened when you're told the late stage and that its not curable. But take heart that treatments are effective. And your dad can recover from stage 4. Hopefully his oncologist can tailor the treatment that is best for your dad of which he is a good candidate. There are several genetic tests to finetune the treatment determination should his oncologist decide that is a viable option.

It takes a little time to get over the shock. But as your dad gets better incrementally, you will find that you're more relieved. I won't lie to you that you won't ever feel that fear. I suspect fear will always be with me. But compared to first hearing the lung cancer diagnosis to now, that fear is less intense and less present.

You're always welcomed to talk to us, whether on the board or privately by email. As long as it's not too personal, I think sharing cancer experiences help others.

My best wishes for your dad's full recovery.

4weeds

kaitek said:

Hi 4weeds,

I didn't respond to your message the first time as I was clueless what leptomeningeal disease was. But where it concerns stage 4 NSCLC, then I am becoming more informed about that.

If I may share with you in how we've dealt with my mom's advanced cancer, it is natural to be shocked, devastated and saddened when you're told the late stage and that its not curable. But take heart that treatments are effective. And your dad can recover from stage 4. Hopefully his oncologist can tailor the treatment that is best for your dad of which he is a good candidate. There are several genetic tests to finetune the treatment determination should his oncologist decide that is a viable option.

It takes a little time to get over the shock. But as your dad gets better incrementally, you will find that you're more relieved. I won't lie to you that you won't ever feel that fear. I suspect fear will always be with me. But compared to first hearing the lung cancer diagnosis to now, that fear is less intense and less present.

You're always welcomed to talk to us, whether on the board or privately by email. As long as it's not too personal, I think sharing cancer experiences help others.

My best wishes for your dad's full recovery.

Hi kaitek,

Thank you for your words of encouragement, they are greatly appreciated.

I'm trying to have a good combination of optimism and realism. I've spent the last three hours online looking for more information (which can be both alarming and empowering).

My Dad goes into surgery tomorrow morning to have an Ommaya reservoir placed in his head that will deliver intrathecal chemo to his cerebrospinal fluid. It's not even the adenocarcenoma in his lung that's the issue, it's the metastatic cancer in the brain and spinal fluid that's causing the problems.

Thank you again for your reply. It's great to have a resource with such understanding people. My best wishes for you and your Mom.

kaitek

4weeds said:

Hi kaitek,

Thank you for your words of encouragement, they are greatly appreciated.

I'm trying to have a good combination of optimism and realism. I've spent the last three hours online looking for more information (which can be both alarming and empowering).

My Dad goes into surgery tomorrow morning to have an Ommaya reservoir placed in his head that will deliver intrathecal chemo to his cerebrospinal fluid. It's not even the adenocarcenoma in his lung that's the issue, it's the metastatic cancer in the brain and spinal fluid that's causing the problems.

Thank you again for your reply. It's great to have a resource with such understanding people. My best wishes for you and your Mom.

Hi 4weeds,

No problem on comforting fellow caregivers and to patients battling cancer. I consider it a duty now to help out where I can. I've been where you've been so I know how frightening coping is.

I've never heard of the treatment your dad will be receiving. I usually read of people receiving radiation for cancer spreading to the brain. Did the oncologist explain the advantages of the treatment your dad is getting? And I'm curious as to the specific drug.

If you ever need more words of comfort, please feel free to email me anytime. Thank you for your kind thoughts for my mom and me.

Good luck on the treatments for your dad. Update us on his condition. I'm always interested in other people's fight with their cancer, especially the same stage 4 as my mom's.