Metastasized lung cancer

Posted by harleydog @harleydog, Dec 14, 2018

Hello, my name is Tracie and my father was just diagnosed with 4th stage non cell lung cancer that had metastasized to the brain. We live far apart, so when I got to him he was very ill and close to death. After he got his brain scan the doctor put him on a Dexamethasone 6mg a day. He had made a huge turn around. Seems alert, eating well and no more falls. He wants me to go back home and I’m very concerned that his prognosis could change overnight . He has refused all other treatments because he is terminal, so it’s just the steroids. Does anyone know about how long these steroids will continue keeping his brain swelling down. He won’t let me bring in help and he won’t come home with me. I was hoping someone had a general idea on steroid use and there effectiveness. Can they suddenly stop helping? I’m very worried

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)?

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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??????

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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.

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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.

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

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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.

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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😊

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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.

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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

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@karen43

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

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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?

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Hi @harleydog…so sorry to hear about your father! My suggestion is talk to your father’s doctor and ask about hospice/palliative care for him if you haven’t already done so. You may want to check the web site https://www.drugs.com/dexamethasone.html relative to the drug.
These are difficult times for your family – I am sure…if you are a believer, prayer helps comfort us! Have a blessed day…

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@karen43

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

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@karen43– Good morning and welcome to Mayo Connect. I am a 22 year lung cancer survivor. I am very sorry that the treatment chosen for your cancer has not been successful so far. I have had SBRT, a type of focused radiation twice for my lungs and they were both successful. One was Proton Beam and the other was Photon Beam. I was very tired after, are you experiencing this also? It took 6 months for the fatigue to peak and then things got better. I really hope that the focused radiation has zapped your cancer for good! Do you know that name for it? You have a very rare form of lung cancer, one I am not familiar with. The type of cancer that I have is called multifocal adenocarcinoma. Simply put this means that I grow more than once cancer at a time. I have had cancer in both lungs and am also stage 4.
Have they treated your lungs successfully? How did they treat it? Please let me know how you are doing. Is your breathing difficult?

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@merpreb

@karen43– Good morning and welcome to Mayo Connect. I am a 22 year lung cancer survivor. I am very sorry that the treatment chosen for your cancer has not been successful so far. I have had SBRT, a type of focused radiation twice for my lungs and they were both successful. One was Proton Beam and the other was Photon Beam. I was very tired after, are you experiencing this also? It took 6 months for the fatigue to peak and then things got better. I really hope that the focused radiation has zapped your cancer for good! Do you know that name for it? You have a very rare form of lung cancer, one I am not familiar with. The type of cancer that I have is called multifocal adenocarcinoma. Simply put this means that I grow more than once cancer at a time. I have had cancer in both lungs and am also stage 4.
Have they treated your lungs successfully? How did they treat it? Please let me know how you are doing. Is your breathing difficult?

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22 years. Wow!!!! I wasn’t sure I’d see spring! I am very tired!….but I’m functioning! Everything is a chore! My legs are weak making walking difficult but doable. Right now I’m just waiting for results of last brain radiation. I am not a good candidate for chemo…..I have none of the genetic markers for focused chemo. At first I was told, there were many options because lung cancer is studied so much, then after all biopsies are studied … nothing! My family is very supportive if I chose to not do the generalized chemo program. At this point, not getting positive feedback from medical staff either…..quality of life issues. Merry, you’ve had both chemo and radiation on Your lungs? I have had nothing to lungs….very slow growing and no c(angels since Jan. It’s the brain they are focused on. The involvement is with the cerebellum and the occipital lobe……which explains the leg involvement. The brain remains intact…..for which I am very greatful. Thanks for getting back to me
Karen

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@karen43– Good morning. And welcome to Spring and you are still here to enjoy it with us! Can you get out and walk, or walk around your house? It should help you. I know that it's tough but exercise will help keep things in order. Your thinking will be clearer too.
Yes I had both generalized chemo and SBRT. What kind of focused radiation did you have? I think that you need to ask the doctor if you don't know. am so glad that your family are supportive. I'm very lucky with that too..
Quality of life needs to be considered when facing a potential danger to your life. It's easy to pass judgment on others about it but it is a very important consideration. Your standard of health, comfort, and happiness need to be assessed by you. What payoff will you get the most out of with these standards? Have you finished all of your necessary decisions about your end of life so that you won't have to make those decisions later on when you might not have full control over the decisions that you must make? Up-to-date will and other paper work? Although I have not reached the point of having to make these decisions because I am facing them I have made every possible ones because I don't want to be faced with anything that I might not be able to make when I am extremely ill. My will is up dated and my power for health care. I have a DNR signed with special circumstances stated. DO you have all of these very depressing but necessary papers up dated?
Other than extreme fatigue are you having other symptoms such as dizziness, headaches or mixed up thinking?

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