I'm new here...

[cdidion]

Hello, my name is Connie, and I am new here. My dad was diagnosed with NSCLC. We are still waiting on the final test. His older brother has also been diagnosed with NSCLC, Adenocarcinoma. I'm hoping to reach out to others who have been diagnosed with the same and learn how you are coping.

[scottlg]

Hi Connie,

I'm on round 3 with adrenal carcinoma. The first was in 2012. I've very much lost any professional drive. Bc breathing became more difficult and short on energy, I'm highly selective with my time. I tend to get overwhelmed pretty easy. I never really bounced back. If I got short of breath it made me anxious...& vice versa. I've learned to relax with that. Exhaustion can make you feel powerless...to manage your life. Finances are an issue but with help from my son and atty I'm emerging.

I realize this must sound terrible and probably scaring you. I apologize. My son had to tell me for validation that cancer has a tremendous and terrifying impact on the patient and the family.

Cancer can create real depression...like feeling under water all the time. Things have come to a head for me recently...basically deciding to stop feeling so miserable. I have to believe that G-d's plan for me is bigger than my plan for me. It means letting go of depression and getting out of the way. And...Trusting.

Tell you the truth, most folks on this site have had it way worse and still do...but somehow they've found a silver lining. G-d bless!

[cdidion in reply to scottlg]

Thank you and the best to you.

[JeanE41 in reply to scottlg]

It's good to see your post. Hope you are feeling better.

[SBLT in reply to scottlg]

Sometimes I think about others with different diseases and really state to my self in spite of my 3 different non related cancers, Wow some people have it much worst. Always show gratitude toward yourself. It helps you to stay positive!

[Denzie Moderator Volunteer]

Hi and Welcome!

I'm a 6.5+years survivor of stage 4 lung adenocarcinoma. When I was diagnosed it was not routine to test for mutations like EGFR and ALK.

Slowly, I've returned to some of my previous activities and added new ones. I work 2 three hour shifts a week at my old job, I volunteer at the hospital in the Oncology Center 2x week for 2.5-3 hrs per shift depending on how busy it is.

This is an exciting time to be a lung cancer patient, advocate or clinician. In the first 35 years after President Nixon declared the war on cancer, there were one or two new lung cancer drug developed. In the last 3 years there have been 8 new lung cancer treatments approved. Hopefully one of those new treatments will work for both of them.

When you have more information about your dads cancer type, staging and treatment plan let us know what it is so we can help you with side effect things that helped us.

It's spooky that they were both just diagnosed. Did your uncle's cancer prompt your dad to get checked?

[cdidion in reply to Denzie]

Thank you for the great information. Congrats on 6 1/2 years!!! That's awesome.

Oddly enough my dad just started feeling bad about a month and a half after his brother was diagnosed.

[SBLT in reply to Denzie]

congrats on 6.5 years! way to go

[Memaw0100]

Welcome to the community here. I hate you are here, for obvious reasons, but glad you are searching for support. It is very scary to be personally diagnosed and be a family member of someone. I have been both. My Mom died in '89 with lung cancer. I was diagnosed in '13. There have been much progress made in treatment since her death. You will find many stories of folks fighting this awful disease. What I have found is stories of hope, fear, encouragement and courage to fight. Most of all I have seen faith. Much prayers and God bless your family!!

[cdidion in reply to Memaw0100]

Thank you so much!!! Yes, I am glad I found this great site for such encouraging stories. Yes there is much fear in hearing that awful word C A N C E R!!!

I hope you continue with your progress

[SBLT in reply to Memaw0100]

I was on clinical trial of Tarceva. I also have stage 4 lung cancer. The drug has now gone to market an

[Collinjo1]

Lung cancer is very unforgiving, i started out a year ago this month with stage iv. I have lost almost 90 lbs and you can imagine what I look like, currently i am on a clinical trial, my dr. Said might as well do the clinical trial due to i have nothing too lose, that leaves you with a negative attitude.

[cdidion in reply to Collinjo1]

Sorry to hear that, but I believe you have everything to lose. Keep fighting and stay positive.

[SBLT in reply to cdidion]

Bad doctor saying that, Good doctor knowing that there are experimental trials that do help

[anrean in reply to Collinjo1]

Clinical trials can be very successful. Long before they called them clinical trials, my grandfather was the first person to receive a new chemo for Hodgkins. He was a day or two from passing when they gave him the option to try the new chemo, and it gave us an extra FOUR YEARS with him. I cherish every moment of those years!!

I am so sorry your doctor left you feeling so negative. Please turn it around and look for hope in this clinical trial. There have been some incredible changes in treatment over the past few year!!

[Steph60]

Hearing the diagnosis is overwhelming as is all the tests that you go through before getting the final diagnosis and treatment plan. I was very fortunate that my NSCLC was found at stage 1B, that being said it is still scary. I had surgery to remove my upper right lobe and 4 rounds of chemo since the tumor was located on the lining of my lung. Through it all try a keep a positive attitude, but realize that you you/ your dad will have pity parties throughout- allow them to happen, then pull yourself together and move forward. It has been almost 4 years since I was diagnosed and am always fearful that it will return. Sending you and your dad good thoughts.

[cdidion in reply to Steph60]

Awe, thank you!!! Yes there has been some pity parties on both ends. I try to keep that away from my dad. I want him to see my positive. My motto has been: I can do all things through Christ who strengthens me. Philippines 4:13.

Thank you again!!!

[Steph60 in reply to cdidion]

I just kept telling myself that if others can make through then I can too. Just keep telling yourself that when things seem overwhelming.🙂

[JeanE41]

Welcome Connie. I'm so sorry that you and your dad and uncle are going through this. I had a left upper lobectomy in June of 2015. As frightening and exhausting as the whole process has been for me, it was far worse for my daughters, who have been with me through this journey. Having you there for him is a major comfort for your dad. The things that my daughters did were to attend as many of the medical visits as possible, provide transportation , support and of course love. As of now, things are going well for me.

I urge you to take good care of yourself. You are in for a difficult journey, but you can do it. Your dad is very fortunate to have you on his side.

Take care. You will find much support and wisdom in this community. I hope you continue to update us during your journey with this nasty disease. We support and learn from each other.

Jean

[cdidion in reply to JeanE41]

Thank you for those great words of encouragement. I'm so glad I found this site.

I do try and attend as much as I can when it pertains to information, diagnosis.

I'm glad you had your daughters by your side.

I will update as I learn more.

[anrean]

Dear Connie,

Welcome! You will find a lot of support and knowledge in this group. Please keep us updated as you find out more about your dad and uncle.

I am a 4 time primary cancer survivor. Each cancer has been different in so many ways. Now that I am working my way to survivorship with NSCLC I have found this group to be so very helpful in the good days and in the bad days. I've come to support others, as well as to seek support for myself.

As a care giver, you will find that there are good and bad days for your dad and uncle. Please keep in mind that you are allowed to have the same! Being a care giver is often much harder than being the patient! You must remember to carve out time for you to recharge your batteries, too.

One caveat I would like to share is that if you choose to do research, please keep in mind what my doc told me - not to trust anything that is older than 6 months. Things are changing so fast, and with all the requirements of publication (mostly numerous peer reviews) you could be reading information that is 2-3 years old and no longer applies. Make sure you have good doctors and never hesitate to get a 2nd opinion - I did and it saved my life.

God Bless

Lauri-Anne

[cdidion]

Congrats on being a survivor!!!! Thanks for the information about the caregiver part :). I thought that it was selfish if I was having a bad day because I'm not the one with cancer, but yes it is hard on everyone.

Good advice on the research, thanks. I am a researcher.

I'm glad I found this group.

[ThePurplePlace]

Hi,

I also have Stage IV NSCLC Adeno and am happy to now be stable (2 1/2 years into my battle). I am currently "off treatment" and doing okay. I have days where I'm totally exhausted and wiped out, but for the most part I live a fairly good life. I have a brand new grand baby who came into my life this year and she's my new hope and inspiration. I'm even babysitting her a few days (few hours/day) each week. It's PURE joy and I love her so much!

I agree with the other posters, this is hard, but we've come a long way and I know that without Immunotherpay, I would not be here today! Think positive and tell you Dad (and Uncle) to go kick cancer in the butt! Best wishes!

[cdidion in reply to ThePurplePlace]

Thank you!!! Great news on your 2 1/2 years!!!

[FtB_Peggy]

cdidion, Welcome! I am so glad you have joined us. As you have heard, you will find hope here, and great, practical advice. Also, very caring hearts will listen to you here. Keep taking one day at a time, remember to take care of yourself, and enjoy the love you feel for your Dad and Uncle. As you have heard, you will all experience a wide range of emotions, patience and humor help...and allowing tears now and then isn't a bad idea either. Hugs.

[cdidion in reply to FtB_Peggy]

Thank you 😊😊😊