Metastasized lung cancer

Hi Tracie @harleydog, welcome to Connect. I added your message to the Lung Cancer group as well (https://connect.mayoclinic.org/group/lung-cancer/). I'm also going to tag a few other members to offer their thoughts and support, like @lighthouse68 @merpreb @burrkay @goldenretriever.
You may also be interested in this discussion:
- stage 4 inoperative squamous nsclc now on opdivo last line tx https://connect.mayoclinic.org/discussion/stage-4-inoperative-squamous-nsclc-now-on-opdivo-last-line-tx/

Tracie, I can imagine that you are very worried, especially since you have to make an impossible decision with so many unknowns - do you stay with him or support him from afar? Your father's oncologist would be better able to answer your questions about how long steroids will continue to help with the brain swelling and how long they will help. Are you able to accompany your father to his next appointment? Or is their a nurse coordinator that you can call?

My father also made the decision to stop treatments with stage 4 colorectal cancer. The side effects were more than he wished to bear. There were times that we thought the end was near and then he would rally. It was challenging to know when to stay and when to return home and work. I also wanted to support my mom, but they needed their time together. Does your father live alone? Who is nearby and helping with his care (if anyone)?

I came down from Washington to Arizona a month ago today. I took him to all his appointments and now he wants no more intervention. He simply wants to stick to taking the steroids and let nature take its course. He lives alone and I am his only child. He is a very private person and it’s difficult to get him to accept help. He has one friend who swings by and checks on him. I did sign him up for hospice, because I have to return home to my family and job. They are scheduled to come in once a week to see how he’s doing and if there is something concerning they will contact me. I tried to get a clearer picture from his oncologist, but he could not say how long the steroids would continue to work . He simply said everyone reacts differently to the steroids, so only time will tell. I was hoping there might be other people who may have experienced metastatic brain cancer being treated only by steroids. I’m conflicted terribly in leaving him. Just so many unknowns??????

Welcome @harleydog- I'm sorry to hear about your dad. He has made a sane and difficult decision. I know that you want him to keep going and receive more than he has chosen. But now you have to respect his wishes. Hospice is a wonderful organization. Can you take a leave of absence from your job, if you work or move your family to your father's?I also think that hospice will offer more meds if needed and up the Dexamethasone steroid dosage as needed. If your father has a computer than your family can do face time or skype. You can have high quality time with him if you can't move. Does your dad have a computer? I also hope that you are taking care of yourself.

Thank you for up lifting thoughts. Yes, I do need to respect his wishes. I have complete faith in hospice and know they will contact me if there is any concern. I’m going home on Monday, but will be returning in 3 weeks to stay again. Right now this will have to work until it doesn’t; then we’ll all have to readjust. I’m staying positive and hoping for the best.

@harleydog - Good for you. Can you keep in touch by computer?

Hi Tracie
So sorry to hear that you father is so Ill. Best to talk with his oncologist about his care.
However, I can tell you there is hope for stage 4 lung cancer patients...with the many new therapies that seem to become available every week.
Your father needs your love and your care, albeit from afar. If your father does not wish to have intervention, you need to respect his decision. Just let him know you are there for him.
In our case, our faith in God helped us through many difficult times, since the onset of my wife’s stage 4 metastatic lung cancer in 2016. Unlike you father, my wife elected intervention with the medical excellence at Mayo Clinic. With the immunotherapy she gets, her quality of life is very good, and we take it “one day at a time”, knowing at any time it all can change.
Sorry I could not be more helpful. Hope you find the answers to your questions about steroidal treatment.

Thank you so much for your kind words and hope. I know that my support and love means everything to him right now and he’s the happiest I’ve seen him in some time. I taking each day with him as a blessing and like you knowing that it can change in a heart beat. My faith in God is what is keeping me together and giving me the strength to stay positive for him. I’m at peace and know he will be taken care of. I wish you and you amazing wife the very best. May the Lord give her many more years with you😊

Hi everyone.

Want to find out, what are the chances of brain metastasis spreading more if the actual lung cancer is regressing?

My dad’s last PET showed that his cancer is regressing but when he did an MRI on his brain , doctors said that they see a new metastasis. Doctors asked to redo the MRI since looks like my dad was moving his head during the last MRI and they could not see the real picture.

I hope that the picture will be better after the second MRI.

I thought the chemo and immunotherapy that he is doing is helping on brain metastasis too but after my research looks like not much.

I was diagnosed in Jan 2019 with stage 4 mucinous adenocarcinomas which has metastized to the brain. I have completed 10 treatment sessions of whole brain radiation which had no impact on existing spots. The 2nd course of action was focused radiation on 3 areas of the brain which I completed 2 weeks ago. In 2 more weeks an MRI will be fine to see if it was effective. Has anyone had more than 2 series of radiation on the brain? Because if the brain involvement I’m not a good candidate for chemo
Thank you for whatever info you can share

Hi @karen43 and welcome to Connect. you'll notice that I moved your message to an existing discussion in the Lung Cancer group. I did this so that you can connect with others who have experience with metastasized lung cancer.

I invite you to explore some of the other discussions in the Lung Cancer group too: https://connect.mayoclinic.org/group/lung-cancer/

I'm sorry to hear that the whole brain radiation didn't change the lesions on the brain. Fingers crossed that the second round of targeted radiation helped. How are you doing? Do you have any symptoms?