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Hi all,

 

my husband was diagnised with squamous non small cell lung cancer stage iv on 11/13/22

2.4 cm tumor upper right, 3 stations? lymph nodes in chest, pericardiam fluid. 2 cycles in of chemo/immunotherapy (3 week) couldn't breathe went to ER massive amount if fluid in pericardium and so the snowball rolled. I won't go into the feelings, his side (which I can't say I know being the bystander ūüėĒ) and mine. Sure you all know. The tsunami, devastating.¬†

They did not give a good prognosis of course. But faith and hope tell me otherwise. Carboplatin,taxol, keytruda . Tingling electric shocks, lost hair, fatigue, at times dizzy, but now a cough. We don't know if it's a side effect, cancer itself or the cold he unfortunately caught. Had meds from doc and still coughing his head off . Fits at nite. It's driving him insane, can't sleep. Any advice? I feel helpless in this journey. 

They drained his heart. It has not come back. I think therapy drug helped that. But a plus. Brain is clear. Another plus. 

I joined this to cope.  I'm not handling it well. Still feeling blindsided. Thanks for reading. 

 

 

 

 

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Sonny,

Welcome to our forums.  You're correct...there are no people I know of who would choose to be here.  But, the good news is that this is a great place for you and your husband to get answers to questions, hear of other's experiences, and get support from people who understand the journey he is on.  I too was diagnosed with NSCLC Squamous in April 2019.  My treatment was purely surgical (stage 1a) and as of August 2022 I was still NED (No Evidence of Disease).  There are folks here diagnosed with different cancer forms as well as stages at diagnosis.  Please take a look below...get to learn all you can and always feel free to ask questions whenever you have them.

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Share all that you get below with your husband.  He'll find a group that understands what he is going through.

Read a blog titles "10 Steps to Surviving Lung Cancer; From a Survivor" (click on the title).  It was written by someone who was diagnosed at Stage 3, went to Stage 4 and today is considered cured 18 years after his diagnosis.

We also have an area for caregivers called, "Caregiver's Resource Center", and you may find it helpful as you support your husband through this disease.

Next is a great section of our Lungevity site titles "Lung Cancer 101" where there is a huge amount of information that can help you as you move forward from diagnosis to treatment, and then onward.  

Last note...DO NOT LOOK TO DR. GOOGLE FOR OUTCOMES!!!  There are many reasons for this; the first being the the prognosis cited are five-year averages that don't include the latest treatments and available tools used in fighting the disease.   Next, each patient is different, their reaction to treatment, the cause of their cancer, the stage at diagnosis, etc...so stick with your medical team and never be afraid to get a second opinion.  We have super people here who were told to "get their things in order", and many years later they are still living full and happy lives.

Learn all you can, get your husband involved here as well, and we look forward to helping you.

Lou

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Sonny,

Of course you are not handling this well. It is par for our lung cancer course.

I'll add a couple of suggestions to Lou's wise counsel. Trying to cope is the right attitude. Your husband's battle will be a long one and you both need to acquire coping skills. How is this done? I think it is the right combination of persistence and prospective. Your husband faces an arduous treatment regime and lung cancer rarely cooperates. I note he's having combination Taxol, Carboplatin and Keytruda. I had 18 infusions of Taxol and Carboplatin in the course of 5 lines of treatment to defeat my lung cancer. These two drugs together are heavy hitters but adding the immunotherapy (Keytruda) concurrently enhances effectiveness. Still, don't expect a one and done treatment plan. Late stage diagnosed disease requires persistence. Settle in for the long game!

In terms of prospective, don't forget that even during the treatment battle, there is still life to lead. Don't put off family events. Try a change in scenery, even if it is to a proximate destination to enjoy a weekend together away from treatment. I note you live in Southampton. I grew up in DELCO and suggest a weekend together at the Grand Hotel in Hershey or perhaps Atlantic City. Do your best to step outside of the treatment environment and enjoy life together. 

Coughing is an expected symptom. Here are my best tips to minimize coughing. I found a steam shower to be the best way to break my coughing spasms. And, you should eliminate dust, every way possible. When the chemo takes hold, expect some relief but I spent a lot of time in the shower, steaming up.

Stay the course.

Tom

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Blindsided. Tsunami. I recognize these feelings so well-- I think anyone in the lung cancer community does. Lungevity has great resources; Lou linked to the caregiver section. I also suggest you check in with the monthly Lungevity virtual gathering for caregivers. Here's the listing:  

 

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Thursday Caregiver Connection (4th Thursday of the month): 8 pm ET | 7 pm CT | 5 pm PT
For caregivers, family & friends
You don’t need to take on caregiving alone. Connect with others who share common experiences and build your community of fellow caregivers.
Register in advance for this meeting
After registering, you will receive a confirmation email containing information about joining the meeting.   

I want to encourage you to find your place where you can feel support. For me, that is a weekly visit with a counselor. I wish my husband would seek that for himself, but he hasn't. I just know that I can't support him -- I often feel emotionally clobbered with all my testing, etc.  I've been honest with him about that. In fact, honesty has been our watchword through this for the almost two years since we started down this road. 

I'm glad you're here. Being together doesn't make the troubles go away, but it makes them feel not so heavy. I'm grateful for all my companions on this road. 

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A prescription for lorazepam was part of my chemo comfort medications, and it really helped me sleep when I was undergoing treatments (carbo/taxol and radiation). I also take it on the rare occasions when I have shortness of breath. 

A palliative care specialist might be a good addition to your husband's care team. Mine was invaluable. 

My personal experience is that things get worse before they get better. 2020 was an awful year for me. But here I am 3 years later, NED and healthy. My husband was a wonderful caregiver but the stress and worry took a toll on his mental health and he needed an anti-depressant and talk therapy to recover. Don't be afraid or ashamed to reach out to your primary doctor if you find yourself struggling. 

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