Hello World (Dad diagnosed with stage IV nsclc adenocarcinoma)

[Kwally3]

Hi friends,
I have been prowling this forums the the days leading up to the diagnosis and have learned a lot about my dad's disease through lungevity. I am officially joining now that my dad's biopsy results are back. We are waiting for the results of bone scan, MRI, and the comprehensive genomic testing but he is currently stage iv nsclc adencarcinoma (age 58 and smoked 1 cigarette a day for just 1 year 20+ years ago). Here's to hoping his tumor was the lame student during cancer school and learned nothing useful.

I am hoping to reach out to other caregivers and patients to learn how you coped and what processes you set up to track everything, investigate cancer literature, and navigating the health system. I am really hoping that my dad (and your loved ones and yourselves) make it through this. 

Also, for other newcomers, I'd want to say that Dr. Lynn Eldridge's articles on lung cancer on verywellhealth have tremendously helped me. They touch on topics such as the emotional rolelr coaster cancer patients experience, lung cancer treatment info, what the survival numbers mean (and how they're outdated), progress in current research, and more. 

 

[Curt]

Hello @Kwally3.  I’m sorry to hear about your dad’s diagnosis.  Cancer is a roller coaster.  It’s important to know that there will be plenty of downs but as your dad settles into a treatment plan there can be lots of ups as well.  Be sure to enjoy those tot he fullest.  It will help get you and your dad through the tougher times.   My dad was diagnosed years ago at Stage IV.  Unfortunately today’s treatment options were not available to him.  I am a never smoker and was diagnosed a few months ago and was really surprised to see how  treatment options have changed for the better.  It was disappointing when thinking about my dad, but encouraging when thinking about myself.  It’s good he had comprehensive genomic testing..  It’s pretty standard protocol now but I’m often surprised that all places don’t do it as standard practice.  Knowing the specific genetic make up of the tumor and whether or not there are any genetic mutations can help in creating an affective treatment plan.   

Hang in there   You and your dad aren’t alone in this.  

 

[BridgetO]

Hi and welcome. I'm sorry, too, about your dad's diagnosis. I never smoked and I was diagnosed with adenocarcinoma. Fortunately, mine was discovered early on a CT scan for something else, so surgery and ongoing surveillance was all I needed. Curt is right that the advances in lung cancer treatment in the last few years are amazing and a lot of people with advanced cancer are living long and well. I'm sure  you'll be hearing from some of them on these forums.Let us know what questions you have and how we can support you. Your dad is lucky to have you as his supporter and advocate.

Bridget O

[Roz]

So sorry to hear about your dad's diagnosis. Just know that there are many treatment options available!

If you have any specific questions, just ask. I also have stage IV NSCLC (adenocarcinoma-KRAS mutation)..

I have had two lobes removed (2017), followed by chemo, and then it recurred. So, I begin immunotherapy treatment on a clinical trial on Tuesday.

Best of luck to you and your dad. He is lucky to have your support!!

 

Ro

[Kwally3]

@Curt, thanks for the support! We will definitely give this all we've got and we're making sure to get in plenty of hikes to up his physical and mental health. So sorry to hear about your diagnosis and about your father. I noticed you're in new york so I'm sure you already know about the reputation of Memorial Sloan Kettering. Treatments now are much better than four years ago from what I've read. You have a fighting chance!

@BridgetO Thanks for your support! I am glad that yours was discovered early. I hope future diagnostics technology/public policy will make it much easier to catch lung cancer early on. I will be reaching out in the coming days to ask community members for advice on how they evaluated possible clinical trials and what were their processes and resources for research. Do you have suggestions on how to best do that? whether communicate over a call or via text on these forums.

@Roz Thanks for your support! Sorry to hear about the reoccurence but am  wishing you a strong response to the trial! Mind my asking how you evaluated that clinical trial as the most appropriate/best for yourself?

[Rower Michelle]

Hi there! 

Just wanted to say welcome to our group. You’re very bright and Dad is lucky to have you on his support team.  Here are a few very practical recommendations as you begin to find your way to the new normal-

1. Have someone stay in touch with the Insurance company, ask for a case manager to be assigned. This will help mitigate any surprise medical bills. 

2. If your Dad is on short term disability, someone needs to track the review and approval dates. 

3 A Stage IV cancer diagnosis will “automatically”  qualify your Dad for Social Security Disability.  There is a five month waiting period after date of diagnosis.  Even if your Dad is considering working, it’s best get the ball rolling sooner.  Get the application started even if you don’t need it now.

4. Ask to meet with the clinic oncology social worker.  There are resources to get your family through this, many are free or of no cost. They can help save you hours of research.  Ask to be introduced to other LC caregivers. 

5. Give yourself permission to have fun and enjoy life.  Your health and well-being will buoy your Dad. 

We all have so many shared experiences and are here to support each other.  

Michelle

[Curt]

Kwally I had surgery at MSK a few months ago.  At this point Is don’t need any follow up treatment but I’m grateful for the advancements both for me if I ever need it and for everyone else fighting this disease.   

[Susan Cornett]

Kwally,

Sorry to hear about your dad's diagnosis but so glad that you found us. This forum has great information and so many wonderful contributors. Your attitude is great and your dad is fortunate to have a son so ready and willing to jump in. This disease is persistent and frustrating but it's just not the death sentence it once was. I was diagnosed with stage IV adenocarcinoma in 2016, and had recurrences in both 2017 and 2018. I celebrated my three year cancerversary in March. 

I made a decision early on to live my life as though the cancer isn't there. I just keep making plans and doing what I want. There are slow days and down days but a good friend reminded me that forward is forward, no matter the speed. 

Keep us posted and ask us anything. 

[Neverstopfighting]

Kwally,

Welcome aboard.  It’s so nice to see a son so involved in his father’s treatment.  Unfortunately, I’m on the other end. It’s my dad (and other loving family members) that are involved in my stage iv EGFR mutation AC. 

For coping, it’s the serenity prayer for me. Control what I can, accept what I cannot and wisdom to know the difference. I can control my attitude (positive), my diet, exercise, social activity, sleep, and stress (very hard for me). One thing I cannot change is how the cancer is going to react to my treatment. I take the meds as scheduled and hope to “melt” away the metastatic cancer in my lymph nodes and bones while shrinking the tumor. 

I hope that helps a little.  Educate yourself and help your dad be his best advocate.  Per Rower Michelle’s suggestion, I’m reading anti cancer living by Cohen and Jeffries. Really helping me inform myself.  Check it out.  

Best of luck and keep us updated. 

[Roz]

Kwally,

My decision as to which trial was based on my medical oncologist's knowledge of which one would be best for KRAS mutation.

I made sure to find a doctor that was involved in the research as well as seeing patients. Let me know if you have any more ?

 

Best,

Ro

[Kwally3]

On 5/20/2019 at 2:54 PM, Rower Michelle said:

Hi there! 

Just wanted to say welcome to our group. You’re very bright and Dad is lucky to have you on his support team.  Here are a few very practical recommendations as you begin to find your way to the new normal-

1. Have someone stay in touch with the Insurance company, ask for a case manager to be assigned. This will help mitigate any surprise medical bills. 

2. If your Dad is on short term disability, someone needs to track the review and approval dates. 

3 A Stage IV cancer diagnosis will “automatically”  qualify your Dad for Social Security Disability.  There is a five month waiting period after date of diagnosis.  Even if your Dad is considering working, it’s best get the ball rolling sooner.  Get the application started even if you don’t need it now.

4. Ask to meet with the clinic oncology social worker.  There are resources to get your family through this, many are free or of no cost. They can help save you hours of research.  Ask to be introduced to other LC caregivers. 

5. Give yourself permission to have fun and enjoy life.  Your health and well-being will buoy your Dad. 

We all have so many shared experiences and are here to support each other.  

Michelle

Thanks Michelle! I wasn't aware of point 1 so will be doing that!

And, thanks NeverStopFighting for your view!

[Steff]

HI Kwally3,

I'm a bit late in replying, but as a caregiver for my mom with NSCLC, I want to thank you for being there for dad and taking on this heavy role.  Your role as a caregiver/advocate will likely depend on the role your dad plays. For me, my mom was able to care for herself (and my dad as she is his caregiver) during treatment.  I brought over freezer meals that my dad could microwave on days my mom didn't have enough energy to cook.  But she mainly took care of herself minus the weekly changing of sheets and monthly cleaning of air filters.  So my job became the advocate.  My mom cannot tell you with specificity what type of lung cancer she has and all of the specific drugs she has received - that's my job.  Her job was to deal with the side effects of treatment and get well.  Here is what I have done as an advocate:

I make sure that I get all reports from doctor appointments, whether that is through the online portal her clinic has or written notes from the docs.  After nearly 4 years, I have her oncologist trained to hand her notes over to me as she walks out the door.  I do this to help track side effects and cancer progression/regression. 

I make sure to note her regular blood draws to try to catch any anomalies that might cause some trouble.  

I study her scans and look up any words that the techs use that I don't understand.  I do this to help myself understand, as well as, be able to explain it to my mom.

I also act as a "translator" between my mom's oncologist and her.  Her doc has a tendency to speak above what my mom's chemo-brain can handle, so I stop the doc and translate so that my mom can understand.

And finally, I still remember that I am her daughter.  Roles easily change when a child becomes the caregiver, but my mom is still my mom. I still go to her when I have troubles she can help with or when I need a hug.  Cancer changes a lot, but I feel that it's important to remember our initial role and maintain it as much as possible.

I hope this might give you a tip or two.

Take Care,

Steff

[Kwally3]

Hi @Steff, thanks for the detailed responsive. I feel I am making things stuff as I go so I am glad to have a template to base off of. Your mom is lucky to have you be her advocate and I wish the best for you two!

w