Hello

[Melody7373]

Hi,

I was diagnosed in January 2018. I thought I had pneumonia but an X-ray showed a mass and plueral effusion on the right side. I had surgery in April to remove the pluera on the right because it became infected. I take Tarceva and I am dong much better. The tumor has shrunk by half and other nodules are less visible. I am 53 years old and smoked when I was 15 for about 10 years. Lately, I am struggling emotionally. any encouragement would help me .I don't have much of a support system. I try to hide my fear from my daughters and husband. My daughters all in their 20s but I still feel like I need to protect them.We are very close.

[Steff]

Hi Melody7373,

Welcome. I am happy to hear that Tarceva is working for you!  I am a care advocate for my mom (she really takes care of herself, I just tell her what to do in regard to her treatment, lol) who is 64 and has NSCLC adenocarcinoma. She was originally diagnosed in November 2015.  Since then, it's been a roller coaster of emotions and health issues.  She is now battling a recurrence that is inoperable and was closing off her airway.  She's been on immunotherapy for a little over a year now and is doing quite well with it.  As a daughter whose mom is battling cancer, I would like to tell you that it's okay to dump your emotions on your daughters.  I feel like I'm in the dark and my mom is hiding something from me when she keeps her stress and worry from me.  For awhile, talk about cancer would consume our daily conversation, but a year after diagnosis, I find that cancer or her health don't even come up in our daily phone calls.  And yes, my mom's stress and worry worried me, but to me, that's part of being a family - you are there for each other. I was still in my 30's when my mom was diagnosed, so I am older than your daughters, but even in my 20's I know that I would have been able to handle my mom's worry.  I bet your daughters can too.  My mom and I have always been very close - I am an only child and my dad worked out of town a lot, so it was just her and I during the week.  I didn't think it was possible for us to become closer, but we have through all of this.  I know I will not be the one to find the treatment that eradicates cancer, but I can research and arm myself with the knowledge needed to ensure my mom is getting the care she needs.  Perhaps this is something your daughters can do for you too.  Maybe they are feeling in the dark and want to be there for you.

All of that being said, we are here for you too.  I came to these forums in the need of hope and I got it.  Now I try to offer it....there is hope. You are an example of hope - you are living your life despite a lung cancer diagnosis.  You are a survivor.  Feel free to dump your emotions on us and ask for support, we will give it to you. 

Take care,

Steff

[Melody7373]

Hi Steff,

   Thank you for your reply. Im sorry about your Moms health. What was her treatment if you don't mind me asking? I am tolerating Tarceva pretty well, and when it stops working there are others and new treatments being developed.  Two of my daughters are still at home and they take turns going  to appointments ,so they know whats going on. I just hate to ruin their good days. But I will reach out to an older sister or a fellow cancer survivor/patient I met thru Dana Farber.

  Im glad i found this community.

Melody

[Steff]

Melody,

My mom's treatment started with a lobectomy and then follow-up radiation and chemo (can't remember what kind). For her recurrence, 1 year later, she started with 6 sessions of Alimta/Carbo + Keytruda, then continued with Keytruda only.  Her tumor is on the back of her trachea, so it's impossible to know whether or not it's still there, but after 2 months of chemo + Keytruda, she was able to have the trachea stent removed and hasn't had a problem since.  It was a tough go for her in the beginning, but for the past year, her health has been relatively stable.  We are satisfied with hearing "Your cancer is stable", which I never thought I would be satisfied with hearing!  I am so thankful for the variety of treatment options there are today versus just 3 years ago when my mom was originally diagnosed!  I'm happy to hear that you have other treatment options available if/when Tarceva stops working.  And who knows what else may be available just 6 months from now!

I am happy you have a sister to talk with and another cancer survivor.  My mom really worries about dumping on me, but I assure her that is what I am here for.  I take care of things, I'm a problem solver.  I would feel worse if my mom didn't talk with me.  And I'm really happy that your daughters go to appointments with you.  It's not only supportive for you, but it also shows them what the process looks like if they ever get cancer.  It's been through my mom's experiences and bravery that I know I will be able to handle cancer if/when I get it.

Take Care,

Steff

 

PS.....As a new cancer survivor, I want to be sure that you know about LUNGevity's International Lung Cancer Survivorship  Conference (formerly known as the Hope Summit).  It is in DC in April 2019.  I see you don't live too far away (I live in WA so it was a long trip!).  My mom and I went last year.  It was AMAZING! There are 2 different tracks - one for survivors and one for caregivers.  My mom felt so empowered and supported during and after this conference.  We learned a great deal about lung cancer treatment advancements and saw that we were not alone.  I cried in public for the first time during the caregiver sessions and I received Kleenex and massive amounts of hugs in response. It really was a life changing experience....perhaps something for you and your daughters to attend together.  Anyway, I just wanted to pass this info along in case you want to consider attending next year.  Here's the link: https://lungevity.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=815

[BridgetO]

Hi Melody and welcome. I agree with what Steff has said. She speaks eloquently from a family members point of view. The annual Hope Summit/Survivorship conference is wonderful. I've been twice. I hope you and your daughters can go.

These forums are a great place to find hope and support. Keep posting!

Bridget O

[Tom Galli]

Welcome Melody,

I'm happy Tarceva is working for you.  I knew a lady who took it for 10 years and it controlled her lung cancer.  Sadly, she passed several years ago from a heart attack, completely unrelated to lung cancer.  But. she led a full and meaningful life.

I met Steff and Bridget at last year's summit.  It is a wonderful experience.  You are just an Amtrac trip away and the summit location is close to the DC train station.  

Stay the course.

Tom