SATo

Thanks for the heads up about the cold therapy gloves and socks/vitamin e for dealing with his peripheral neuropathy.   I'll talk to his oncologist about them.  
Unfortunately, my husband doesn't have the type of exon 20 insertion mutation that respond to TKIs.  
Thanks, too, for the well wishes and optimism.  

Thanks for all your kind responses.  Except for some mildish peripheral neuropathy (tingly fingers/sore feet), so far he's doing okay on the Carboplatin, Paclitaxol and Ketruda.  He/we are calming down a bit but the anticipatory grief thing is still an issue.  Comes and goes.  Got myself on a waiting list at Gilda's House for a cancer caregiver support group and he is awaiting connection with the oncological psychiatry intake .   Focussing on visits with his kids and doing day to day things as much as we can.  
Re the question about the Exon 20 mutation, it is the one EGFR mutation that does not respond to TKIs so they can't use them to treat his cancer.  We are carrying on hoping that the current chemo regimen will halt further progression.  Hs a scan re-check in 2.5 to 3 months, after the third cycle to confirm. Hopefully the peripheral neuropathy doesn't get too bad.  Right now its manageable.

My husband (80) who has had fairly stable Stage III CKD for years, was diagnosed with NSCLC then stage IIB at the end of Dec 2022.   His initial scans showed no mets anywhere.  Had surgery and adjuvant chemotherapy (carboplatin/pemexetred) beginning to mid 2023 and had NED until a follow-up CT scan three weeks ago showed mets to lymph nodes, liver and bones.  His original tumor pathology noted adenocarcinoma with genetic markers which were EGFR with the apparently less common Exon 20 insertion mutation.  Given that his cancer is now progressed, he was told that his cohort group usually have about a year to live.  
They tried qualifying him for a Furmonertinib Clinical Trial (we are in Canada and Amivantamab is not covered under our health plan because it costs $10,000 a cycle and a cycle is every 2 weeks when you are on it and it was deemed as not adding any significant improvement for the cost).  Unfortunately, he could not qualify for the Furmo trial (assuming its a similar type of med) given his eGFR kidney scores (despite an IV flush regimen which improved the score but not enough).  
Since not qualifying for the trial, he has just started chemo (carboplatin, paclitaxel and ketruda), which he is tolerating so far, knock on wood.  The oncologist is going to re-scan him after the end of the third 21-day cycle (roughly three months from now) to check on state of further progression.
The questions I have are about pace of progression.  Right now my husband has zero symptoms.  He has no mobility restrictions.  Nothing.  It's like standing in a dry riverbed knowing that the dam down the way is definitely about to bust.  We are in a state of perpetual 'bracing' for the inevitable deluge and it affects the now, which is precious at hte moment.
I am curious about those in the same situation or who may have family members in similar situations.  What has been your experience?  When do the effects of the mets (liver or bone or perhaps eventual brain mets) present.  He is experiencing a great deal of anxiety right now, from my observation, because he is waiting for the next shoe to drop.   I've gotten his oncologist to refer him to occupational therapy (she's seen him already) and a oncological psychiatrist (appt. pending) to assess him for any therapies or medications to help him deal more easier with his fears/anxieties.
He asked his oncologist and was told that no doctor could provide him with an accurate answer about that.  That may be true, but perhaps some of you may have some anecdotal evidence based on your experiences.
 

My 79 y.o. husband finally got his clinical diagnosis based on the fine needle EBUS biopsy.  His MRI and PET didn't show any indication of metasetses.  So, for now, its a localized T3 N0 M0 Stage 2B spiculated 5 cm mass spanning two lobes within the right lung.  Because my husband had a good pulmonary function test, the surgeon recommended a robotic VATS lobectomy and segmentectomy.  The actual surgery only required the lobectomy and a wedge resection, which went well.  Husband was in the hospital for two nights.  After the horribly onerous chest tube was removed he was discharged.  At home he's having a lot chest muscle pain and a lot of breathlessness while getting up from the bed and in doing any kind of walking.  It affects his getting up as much as required to do the 30 mins a day walking.  I reminded him that we are only 5 days out from surgery so not to get discouraged.  We were told that the breathlessness should lift after a few weeks.  While my husband is seeming to be a bit more mobile and getting every two hours during the day for a short walk around in the apartment, the breathlessness seems a bit more.  Am wondering if folks have information they'd be comfortable sharing about whether the breathlessness gets better and how long it takes.  
 

Thanks, Tom.  Your reply helped give some much needed perspective his recovery.
 

Thank you for the responses.   They were helpful in giving me some much needed perspective at this time of high stress.
Re Judy's question about biomarkers - His biopsied tissue is still at the lab and they do run biomarker tests on it as part of their protocol.

Thanks, Tom.  I'll check out Minh's case.  My husband's lung biopsy lab came back as non-small cell adenocarcinoma.  Waiting for the call, imminent from the surgeon.

I have a question about bilobectomy.  My 79 y.o. husband is awaiting his official biopsy / diagnosis results.  The patient portal reports from the cytologist says his lung mass is preliminary malignant but the lymph nodes were negative or benign.  The MRI/PET scans don't show any other cancer / metastases.  He doesn't have heart issues or diabetes or high blood pressure, but he does have CKD stage 3b (stable).  The original CT scan noted that his lungs show mild fibrosis and emphysema (which is weird because he has absolutely no breathing issues whatsoever - with a blood oxygen of 96).  Generally he would appear reasonably health for someone his age.   That's all good, I know, but I've been researching about treatments and it seems that there may be an issue in that his tumor (5cmx4cmx3cm) spans and is tethered to the fissure between the upper right lobe and the middle right lobe.  Apparently this is not a usual presentation and I'm wondering if anyone here around the same age has had this type of lung tumor presentation and what your team did surgically to remove it, or if they didn't and what they did instead to treat it.  Did you have a bilobectomy?  Did they have to remove the entire lung? I'm trying to get ahead of my homework because the diagnosis treatment plan is coming up soon and my husband emotionally isn't doing well and I will need to help him figure out what he wants to do out of whatever options are presented.

SATo
Welcome to our forums.  You've come to a good place for support, knowledge and hope.  One of the first things I'd like you to read (and share with your husband) is a blog titled "10 Steps to Surviving Lung Cancer; From a Survivor" and that can be found here.  You'll learn much about how to handle the disease and some very important things for you to ask for (e.g., getting appropriate testing for possible targeted or immunotherapy).  As the patients wife you may also have questions about taking care of him during treatment.  I would recommend that you check out our caregivers support by clicking on "Caregivers Resource Center".  And finally, you both need to better understand this disease, the testing, treatments, expected outcomes and much of that information can be found at our "Lung Cancer 101" section.
Last point...please don't go and "google" for outcome, and prognosis as the data available it an average over time and does not often reflect the newest treatments and advances being made in the treatment of this tough disease.  Ask any questions you have and know that there is a wide range of experience and knowledge here and our Lungevity Family will freely share what we have with you.
Lou

When my husband was diagnosed with chronic lymphocytic leukemia 7 years ago,I remember our shock as a long married couple - a “ this is it” kind of shock. We were both devastated. But, it wasn’t “ it” and he’s still around and doing quite well. My lung cancer diagnosis created the same chaos for a while. I’ve come to believe that cancer often can be treated like a chronic condition - it IS just a part of our lives. I wish all the best for both of you. There is a national suicide hotline that you might want to check out for your own peace of mind. Just dial 988. They can help you with your own worry and will be able to inform about preventative measures. Love to both of you. Suzan

Hi folks, I'm SATo.  My husband just did his biopsy. He has a 5x4x3 cm lung mass on the right lung that transverses two lobes.  Doctor said it was highly probable it was cancer and prob. stage 2 or 3.  Biopsy cytology reports we got off the patient portal says it's preliminary positive for malignancy. Lymph nodes are negative for malignancy. MRI/PET reports say there is no other observable metastases so that's also good.  Anyway, I'm here to listen and get/give support as we do this cancer journey.  The shock has worn off but my husband is still roller-coastering emotionally between anxiety, high stress, depression and despair (which isn't surprising), and we're not even at the formal diagnosis/treatment plan yet.  Speaking of which, even though it's great it's localized, the surgery for a tumor spanning the fissure between two lobes seems tricky from what I've read with not always great outcomes for someone my husband's age (79).  However, that's for the surgeon to figure out.  I'm worried for him mostly because he's made a few seemingly joking offhand suicidal comments about 'running into traffic' etc.  I asked the doctor for psychosocial oncology support services and he said he would hook us up once the formal diagnosis is done but it's scary.  I'm afraid to leave him alone for very long. Hopefully this forum will find provide some suggestions etc.  

Thank you for the responses.   They were helpful in giving me some much needed perspective at this time of high stress.
Re Judy's question about biomarkers - His biopsied tissue is still at the lab and they do run biomarker tests on it as part of their protocol.

Thank you for the responses.   They were helpful in giving me some much needed perspective at this time of high stress.
Re Judy's question about biomarkers - His biopsied tissue is still at the lab and they do run biomarker tests on it as part of their protocol.

Thank you for the responses.   They were helpful in giving me some much needed perspective at this time of high stress.
Re Judy's question about biomarkers - His biopsied tissue is still at the lab and they do run biomarker tests on it as part of their protocol.

Hi folks, I'm SATo.  My husband just did his biopsy. He has a 5x4x3 cm lung mass on the right lung that transverses two lobes.  Doctor said it was highly probable it was cancer and prob. stage 2 or 3.  Biopsy cytology reports we got off the patient portal says it's preliminary positive for malignancy. Lymph nodes are negative for malignancy. MRI/PET reports say there is no other observable metastases so that's also good.  Anyway, I'm here to listen and get/give support as we do this cancer journey.  The shock has worn off but my husband is still roller-coastering emotionally between anxiety, high stress, depression and despair (which isn't surprising), and we're not even at the formal diagnosis/treatment plan yet.  Speaking of which, even though it's great it's localized, the surgery for a tumor spanning the fissure between two lobes seems tricky from what I've read with not always great outcomes for someone my husband's age (79).  However, that's for the surgeon to figure out.  I'm worried for him mostly because he's made a few seemingly joking offhand suicidal comments about 'running into traffic' etc.  I asked the doctor for psychosocial oncology support services and he said he would hook us up once the formal diagnosis is done but it's scary.  I'm afraid to leave him alone for very long. Hopefully this forum will find provide some suggestions etc.  

Hi SATo, all of your husband's reactions are normal when getting a shocking diagnosis like lung cancer. When I received my Stage IIIB diagnosis in October 2019 at age 66, I didn't think I'd make it to the end of that year. I knew nothing about this disease or LUNGevity. 
I wasn't a candidate for surgery because I had metastasis to lymph nodes. My main tumor was about 6 cm in my lower left lung. I started chemo and radiation almost exactly 3 years ago, and afterward I began taking a targeted therapy pill for my EGFR mutation. I've had No Evidence of Disease (NED) for a while now and am healthy again. 
You don't say if the biopsied tissue is also being sent for biomarker testing. That's an important part of diagnosis but can add to delay in creating a treatment plan. 
Treatments and management of side effects have come a long way in the last several years. I hope you'll both use this site to learn about our disease. As my primary doctor said when she diagnosed me, lung cancer isn't an automatic death sentence anymore. 

Hi SATo, I found out about my cancer this past April and it was really scary thinking I was going to die - my lung cancer was about the same size in my right lower lobe. I had one lymph node that was positive. I was stage 3A. Long story short I had radiation and chemotherapy and was fortunate to get surgery in September(lobectomy) and I am now cancer free. I will have one year of immunotherapy coming up.
Don't despair. He is fortunate there are no lymph nodes involved. We have come a long way in lung cancer research and it is no longer a death sentence that it once was. I am sure there will be others that have been on this forum longer that I that will allot to say to you. Stay positive!
 

Hi folks, I'm SATo.  My husband just did his biopsy. He has a 5x4x3 cm lung mass on the right lung that transverses two lobes.  Doctor said it was highly probable it was cancer and prob. stage 2 or 3.  Biopsy cytology reports we got off the patient portal says it's preliminary positive for malignancy. Lymph nodes are negative for malignancy. MRI/PET reports say there is no other observable metastases so that's also good.  Anyway, I'm here to listen and get/give support as we do this cancer journey.  The shock has worn off but my husband is still roller-coastering emotionally between anxiety, high stress, depression and despair (which isn't surprising), and we're not even at the formal diagnosis/treatment plan yet.  Speaking of which, even though it's great it's localized, the surgery for a tumor spanning the fissure between two lobes seems tricky from what I've read with not always great outcomes for someone my husband's age (79).  However, that's for the surgeon to figure out.  I'm worried for him mostly because he's made a few seemingly joking offhand suicidal comments about 'running into traffic' etc.  I asked the doctor for psychosocial oncology support services and he said he would hook us up once the formal diagnosis is done but it's scary.  I'm afraid to leave him alone for very long. Hopefully this forum will find provide some suggestions etc.