Worst nightmare come true

[litoreggie]

My father was just diagnosed with nsclc stage 4 . It’s in his bone, back and brain. The Drs seem to think they can keep it under control for a few years. He has always been more than a father to me. More my best friend. He only weighs 122pds right now.

[Denzie Moderator Volunteer]

This is a scary time for the whole family. Please know this doesn’t have to be a death sentence. When I was diagnosed 7+ years ago I was told I had 10-15 months to live. No one was talking in terms of years of survival then.

Between 1967 when my dad was diagnosed with lung cancer and 2010 only 3 new treatments were approved for lung cancer. In the last 2.5 years there have been 12 new medications approved. Your dad’s oncologist has reason to be a bit more optimistic with the prognosis.

One of my dearest friends was diagnosed with lung cancer with mets similar to your dad’s. That was 4 years ago.

Do you know if any targetable mutations were found? Did they test for PDL1? Are the results back yet?

Have they discussed a treatment plan? Please know that many here have likely tried the treatment your dad is going to get and they can be very generous in taking time to help you learn how to deal with side effects. Please let us know what you learn and share status updates with us.

[litoreggie in reply to Denzie]

Thanks so much. I will find all of the details out on Friday. I know his first appointment is for radiation for the cancer in his brain. They are going to go over everything then

[judg69]

Hi litoregie, stay strong and stay the course. Your father may just very well surprise you with his resilience. As Denzie mentioned , a fair number of us have been in similar circumstances, and somehow we are still defying the odds. Please let us know if we can be of any assistance at any time. Warmest Wishes, judg69

[litoreggie in reply to judg69]

Thanks so much❤️

[Cici145]

Hello litoreggie,

I completely understand how you are feeling because a little over one month ago my mom was diagnosed with stage 4 nsclc. She is my mother and my best friend. The first few weeks were the scariest but now she has made it through radio surgery and starts Keytruda on Tuesday. He doctors are cautiously optimistic so we are following their lead. You have come to the right place for encouragement. This website has been a savior for me in so many ways.The treatment of nsclc has moved forward tremendously as people here will tell you. Take a deep breath, hug your dad and know that there are people here who know what you’re going through and support you.

[litoreggie in reply to Cici145]

Thank you so much. Much love to you and your Mom❤️❤️

[Lisamk55]

Please know.. you are not alone. This is one of the most scariest things to face in your life. I’ve been in your shoes, with my dad who I call my best friend. He was diagnosed with small cell lung cancer.

Please be positive for yourself and your father. As hard as it seems.. stay strong and tell yourself and your dad that you will beat this! Family means the most during this time.

Praying for your dad!

Lisa

[litoreggie in reply to Lisamk55]

Thank you , Lisa ❤️

[anrean]

Welcome litoreggie, you have found a very knowledgeable and supportive group. Most of us are beyond our expiration dates because of the many recent advances in lung cancer. The one thing I would add to what Denzie has said is to do your homework, but don't rely on anything older than 3-6 months because things are changing that fast and it takes 1-2 years to be published. Ask the oncologist(s) every question you want, no matter how insignificant it may seem to you. The more you are informed the better you will feel about all that is happening. Come back often and let us know how your dad is doing!

Blessings

Lauri-Anne

[litoreggie in reply to anrean]

Thank you! We are wondering about having a port put in to drain the lungs.

[anrean in reply to litoreggie]

Hi I am not familiar with a port to drain the lungs, but I do have a port in my chest for injections and blood draws. It is a Godsend! Instead of being poked a million times there is always only one poke into the port.

I would suggest you start a new post asking about a port to drain the lungs. There are people so much more knowledgeable than me here, and they would be happy to help you. I can see where it would cause so much less discomfort!

Blessings

Lauri-Anne

[Jenniferroseolson in reply to litoreggie]

Perhaps you were talking about a pleurex catheter? I had fluid building up in my lung and pleura space between lung and chest wall (I think...the first months of diagnosis and treatment are fuzzy). A pleurex catheter was installed, and I would drain the fluid through this twice per day, immediately helping me breathe better until the next allowable time to drain the new fluid. It was not painful to drain it but was a hassle and something that required diligent cleanliness. Unfortunately, it became infected after a couple weeks and had to be removed. Fortunately, I was able to begin chemo right after that, which was effective and decreased the fluid buildup. If this is what they are recommending for him, I’m happy to answer any questions you have

[litoreggie in reply to Jenniferroseolson]

Yes , this is what there recommending

[Jenniferroseolson in reply to litoreggie]

It immensely helped my comfort twice a day after I drained the fluid, allowing me to breathe easier. Not ideal, of course, but I am grateful it was available to me.

[Ncpoet]

I was diagnosed with stage 4 nsclc in 2013. New treatments are coming up all the time. I had chemo—carboplatin and alimta. Then I did immuneotherapy drugs—Xalkori and Zykadia. Then back on Alimta again for another year. Been in remission since 2016. There have been newer drugs out since my active treatment. Just graduated from scans every three months to scans every four months. The doctors sound encouraging about your dad. Time is on our side. A cure could just be around the corner. During treatment, I stayed positive, had a strong faith, hoped always, and laughed often. Having a strong support system means alot and enjoy every day with those you love. This a great site to help you find answers.

[litoreggie in reply to Ncpoet]

So happy to hear you are doing well ❤️❤️

[frisk]

Sorry you are having to deal with a cancer diagnosis with your dad. There are many treatment options and I hope that your dad will respond to one.

[litoreggie in reply to frisk]

Thank you❤️

[JeanE41]

Welcome litoreggie. You have come to the right place for support and wisdom. Someone here has gone down or is currently going down this path. With new treatments being discovered and new clinical trials going on, there is good reason to believe your dad's cancer can be controlled.

Your dad is blessed to have you by his side during this journey. The beautiful picture shows the love between you. You will be in my thoughts and prayers. Keep us informed on his progress.

Jean

[litoreggie in reply to JeanE41]

Thank you, Jean❤️ We have been trying to figure out if a port to drain his lungs is a good idea or not

[JeanE41 in reply to litoreggie]

There are many difficult decisions that will have to be made. In this case, a lot depends on how much discomfort and/or shortness of breath he is having. If the port would improve quality of life and comfort, it is certainly worth considering.

[FtB_Peggy]

litoreggie, Welcome to our community! I love your picture, clearly you two have a connection! Thank you for sharing a part of your story with us. Move forward with hope. I will also private message you.

Please keep talking with us! And with his weight, make sure he talks to dietitian or nutritionist at the clinic. Lots of ways to get that weight back on!

[litoreggie in reply to FtB_Peggy]

Thank you . We will be hearing from the dietitian this week. He doesn’t seem to do well on the meal replacement shake drinks. We tried Orgain and I just picked some other samples today. He can’t have Whey right now because he is on Protocel