Walking pneumonia led to lung nodule to lung mass! 2 biopsy this week

Thank you, Lisa, your simple words of support and encouragement are truly helpful. Some of the genetics were done at biopsy.

A brain MRI showed mets to the brain. I am getting Keytruda infusion on Xmas eve. I'm pretty frightened. So many emotions. My husband is, understandably scared and upset, too, and I want to help him, but I don't know how. I had my first meeting with the oncologist yesterday and he was patient and very very helpful. I had a bump on my head from about a month ago that has been painful. I got a STAT MRI and it showed the metatastes in the brain. I want to be strong for my family and hope to beat it, but it's honestly something I don't know is actually doable, even with a positive attitude.

@medtech4 , I was diagnosed in 2020, as stage 4 right away, with metastasis to the liver. Those early days are a bit of a blur in my memory, but I know I cried a lot, and my husband and I held each other. I wasn't ready to express how I was feeling in words, but we could talk about treatment plans and appointments. It takes me a while to let the heavy stuff sink in. I think he found more comfort in talking with others in his family, his sisters. Just try to lean on each other and understand that all of the feelings are valid. Keep the communication going as much as you can.
We honestly don't know how effective any of our treatments will be, or how many side effects we'll experience. But I do know that there have been significant advancements in lung cancer treatments. Most of that has come from immunotherapy (like what you'll have), and targeted therapies (like what I have). There is real hope in these treatments. The statistics are lagging behind today's reality. I'm part of a support group that is made up of people with different types of stage 4 cancer, who have all been living with these conditions for 5 or more years. There are many people living productive lives with metastatic cancer.

Please join us in the Lung Cancer group. Here are some links that may be helpful.
https://connect.mayoclinic.org/discussion/starting-immunotherapy-keytruda/
https://connect.mayoclinic.org/comment/1165868/

@medtech4 , one more question. Do you know if a full biomarker panel has been run against your tissue samples or blood?
The results can take two weeks because a special lab would run the tests (FoundationOne, Guardant, etc.) The results can help drive treatment decisions.

@lls8000 Yes. They did some genetic tests on the lung biopsy sample. The oncologist also took blood samples for biomarkers on Wednesday, the 17th. They used Guardant. It's reassuring that people are living years after their diagnosis. My biggest fear is losing "me" in all this, especially with the brain affected. I want to remain cognizant of my surroundings and able to communicate. I have head pain that the doctor said will lessen with radiation. That will probably begin after the New Year. The doctor will be away the first week in January, but I may begin with his P.A., or wait, because those genetic markers will come back and we'll know how better to move forward. Your support has been helpful to me. I don't know who to share this diagnosis with. Only my closest friends and family know (about 10 people). I may tell a neighbor or two that we talk to often. We don't really "hang out" with them, but we talk.

@medtech4, The additional news of the brain metastasis understandably ramps up your concern. My type of cancer has a high rate of brain mets, but I’ve avoided that …so far. I know plenty of others that have faced this. With newer types of radiation, brain mets can been treated successfully, with very minimal after effects. And the biomarker results may still alter the treatment plan for you.
Are you being treated at a cancer center that you feel comfortable with? Do they have access to targeted brain radiation treatments?
Here’s a link to more info on the types of brain radiation, just in case you need it:
https://www.mayoclinic.org/diseases-conditions/brain-metastases/diagnosis-treatment/drc-20350140
You get to decide who gets to be in your inner circle of information. It’s all still new, you’re still processing the news yourself, and you’ll know when you’re ready for a wider circle of sharing.
Try to find something that can take your mind off of all of this, even for a short while. Wishing you a bit of peace during this difficult time.

@lls8000 One of my markers was highly remarkable for its ability to work with Keytruda for the brain mets. It helps get rid of the "shield" that cancer cells put up to avoid being attacked by your own immune system. It looks promising. I'm getting that first treatment on Xmas eve. The doctor wanted to start that ASAP. The oncologist is very experience and knowledgable. He spent close to an hour with us, explaining in layman's terms and answering questions. He is with Wellstar, an affiliate of the Mayo Clinic. Thanks for the link.

@lls8000 I was going to start Keytruda Xmas eve, but when I went in, the doctor showed me new information about a biomarker that I had and it just came in. Now, there's a new plan. He showed me an article he printed out from NEJM about stage IV lung cancer with metastases to the brain and the statistics were somewhat encouraging. So, I'm starting on cisplastin, Pemetrexed, both chemo and Tagrisso (targeted). I have an EGFR mutation- thr Exon 19 deletion and PD-L1 22C3 of 80% , being over 50% is good. So, I'm hoping for the best but dreading the side effects especially vomiting. I haven't thrown up since I was 12 years old and I'm 67!!! So this is the plan beginning Jan. 2. I have a lot of head pain where there is cancer on the skull and brain. I have a radiologist consult to see if it can help with my pain. I don't know if it can fit in with the other plan or not.

@medtech4, I'm glad that your tests came back quicker than expected, and that they identified a targetable mutation. The targeted therapies can be a game changer where treatments are concerned. I see that they are starting you on chemo too. Of course, make sure the team is proactive with the anti-nausea meds. They should help! I wonder if the Tagrisso may help with the head pain. Did your doctor give you an idea of how long it would take to notice results from the meds and chemo? When I started my targeted therapy, for ALK not EGFR, I could tell it was working in the first week because I started feeling better and could breathe easier.

There are others with EGFR exon19 deletion in the lung cancer group too. You'll see some of their comments in these discussions too. @flusshund, Matthew is a long-term EGFR survivor.
Here are couple of links to discussions that may be helpful.
https://connect.mayoclinic.org/discussion/tagrisso-for-lung-cancer/
https://connect.mayoclinic.org/discussion/carboplatin-plus-permetrexed/

@lls8000 Thanks. Your words and encouragement is helping me cope with all this. I want you to know I really appreciate it.