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Mom's NSCLC Journey - Seeking hope and comfort


Saturn_Bound

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Hi Everyone,

My name is Mariella and I'm sad to introduce myself to you under these circumstances, as I'm sure you hear often whenever you get a new member. 

My mom, who is very beloved to me, was diagnosed with NSCLC - Adenocarcinoma in June 2020. Her only symptom at the time was a persistent cough, and when she got it checked with a CT, they found a tumor in her right lung. The news hit my family very hard. My mom is only 61 years old, and otherwise very healthy but she was an almost life-long smoker-- although she has quit several times throughout her life--- and she has not smoked AT ALL since diagnosis. She was diagnosed at stage IIIB with metastases in several lymph nodes including mediastinal, hilar, and superclavical nodes. She had slight pleural effusion in the right lung where the original tumor was and also had some activity in the left lung. 

She underwent for rounds of chemo over the summer, Cisplatin, Alimta and Inffinzi, I beleive were the names of the chemo she was given. It was tough, it took a toll on her body but she made it through. She is being treated at Todd Cancer Center in Long Beach and we are happy with her oncology team so far. The plan after chemo according to her oncologist was to target the tumors with radiation (then immunotherapy after raditation), but unfortunately per the last CT scan her tumor had not shrunk enough for that to be an option, so the doctor advised that she go straight into immunotherapy. She just started Keytruda last Wednesday, it has only been a week but little to no side effects.

The cancer itself is tough on her body, she coughs A LOT and has shortness of breath. At times a little nausea but not too bad compared to the nausea she had during chemo. She is fatigued often.

On friday she went in for another PET scan and we got the results today. News was not good, it was tough to read. The scan is now showing that the cancer has progressed into her liver and adrenal gland, although I think this metastsis is very new because the CT from a couple weeks ago was clear, or maybe it just went undetected. Again, the immunotherapy just started last week so maybe there is some progress now that we didnt see on the PET-- at least that is my hope. Her brain and bones are clear, but there is increase plural effusion now in both lungs.

We are still waiting on a call from the oncologist (he was going to meet with the Cancer board at the Todd center regarding her case) and he will let us know about next steps. I know once the cancer has spread to the liver it is considered stage 4, so I am prepared for him to let us know the cancer has advanced. I do think they ran a full biomarker test but I am not sure if anything came of it, I will have to ask the onc.

But I am terrified now, at stage 3b I felt like I was holding onto a lot more HOPE. Now that is has advanced i'm just so so scared that I will lose her. I am only 32 years old and there is so much of my life I need her to be a part of. I'm torn between being hopeful that she has some good years left, and feeling also like I need to be realistic. I don't know which way to feel. Sometimes I am in denial, like I still cannot believe this is happening to my mom (even if she smoked! She is so strong and resilient).

I guess I am just searching for words of comfort or signs that maybe she will live a few more years.

Thank you all for reading this <3

-Mariella

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Saturn

Sorry to hear about your mom. You seem on top of all the "technical" stuff so I have only one piece of advice.

Always chose hope versus realistic. Reality will happen. Hope is what will get you there.

Stage IV is not a death sentence (I hope...😎). So hope away, assume the best and roll with whatever comes.

This is a great forum. Take advantage of it.

In my thoughts,

Peace

Tom

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Hi Mariella, I'm sorry about your mom's diagnosis and apparent progression. I am also Stage IIIB at age 67 (diagnosed Oct. 2019). My oncologist had originally considered me for Imfinzi after chemo (6 rounds) and radiation (30x) but is instead treating me with a targeted therapy for my EGFR mutation. Right now I'm stable. 

Please be sure to follow up on the biomarker question, at least for your own information. 

If your mom does get radiation, it could add to her fatigue but may decrease her SoB. The side effects can creep up on you so just be aware. 

There are Stage IV survivors on this forum. Take things one day at a time. You're still processing a difficult life change. Your mom is fortunate to have you for support. My own otherwise healthy mother died suddenly of cardiac arrest at age 85, so there was no warning for us. 

This site has so much useful and current information for patients and caregivers. It has really helped me get through my own journey. 

Thinking of you and your mom and hoping she gets a new path forward. Please keep us posted. 

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Mariella,

I'll add to the chorus of welcomes. My initial diagnosis was stage IIIB and I progressed to stage IV. That was in 2004; I suggest that if I can live, so can your mother.

Here are some things I learned surviving lung cancer. You might want to pass these on to your mother.

We are not doctors but arguably are a collection of the most knowledgable survivors of this very nasty disease. Two things are required to best it: attitude and insight. We'll help with the latter.

Stay the course.

Tom

 

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Hi Saturn Bound, sorry to hear about your mum. My mum was diagnosed with stage 3B NSCLC, subtype squamous cell in February of this year. She had aggressive chemo-radiation and she's currently undergoing immunotherapy as maintainance therapy. At the moment she's NED and touch wood it will stay that way.

It must be a very anxious time for you. It certainly was for me. I'm sorry to hear about the metastasis but there are many people who have been living for stage 4 with metastatic lung cancer. It's no longer the death sentence that it once was. Even the first lung consultant that diagnosed my mum said that 10-15 years ago her prognosis would have been bleak but now there's been a lot of advances in treatment. There are people on this site as well who have stage 4, have been for years and are stable. 

There's always hope and advances are being made all the time. Please keep up updated on your mum's progress and I hope that immunotherapy will do the trick. 

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Hi Saturn: Welcome to our group and I hope you find answers to all your questions. Sorry about your Mom. I was diagnosed with stage III B in the right lung after a persistent cough and pneumonia. I am now on Keytruda and Alitma  after being on both plus Carboplatin. I am also an ex smoker who quit 35 years ago but lung cancer attacks people who never smoked. As for the cough and other side effects please refer to the section Chemotherapy where you will find plenty of help on both. I post detailed information on my treatment under Triplet where we exchange a lot of helpful info.  It is very important that you insist on obtaining  a complete report with the results of the  biomarker tests to see if there is a mutation and if not please insist on running the test a second and a third time to make sure you are completely satisfied with the results. Some members here went that route and discovered they had a mutation after all. I hope Keytruda does the trick for your mom and please have faith and never give up. Best wishes.

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TJM - thank you for the suggestion regarding maintaining hope. I shared that with my mom and she was comforted by that as well.

 

Judy - I am so glad to hear that you are stable right now. Thank you so much for the kind words. I did speak with my moms Oncologist on Friday and he will run another biomarker test should the Keytruda not work for any reason.

 

Tom - Your story is inspiring and gives me a lot of hope. Thank you for the resources.

 

Catlady  - What a relief it must have been for you to see your mom get to NED! It certainly is a very anxious time for me, my mom is the person most dear to me in my life. I am very comforted by the fact that there are so many treatment options today than there were a few years ago, and I pray that something works for my mom to keep her stable and comfortable for many years!

 

Gary -  I hope your treatment plan is work to keep you stable and hopefully one day NED! Thank you so much for your suggestions, I will check out the chemotherapy forum for info on side effects. I will also keep insisting on further biomarker testing. So far the one they ran didn't show any mutations for targeted therapy, but you never know in the future. Hoping and praying Keytruda gets her stable and comfortable for many years to come!

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Hi Marietta,

You’ve heard from many of the regulars here, my motto from the beginning is diagnosis is not prognosis.  A second opinion saved my life, it’s a good idea to consider as the lung cancer research is moving so fast it’s hard for any one center to stay abreast of the latest scientific advances of which there have been more of in the last five years than in the last fifty.  
Feel free to ask us anything. 
Welcome,

Michelle

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