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HelenHJ

Immunotherapy for EGFR+ NSCLC

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I'm new to this site and to such forums in general, but I'll give it a try.  In July I was diagnosed with lung cancer.  At the time a bronchoscopy was unsuccessful with respect to typing and staging the cancer, so I underwent a right lower lobectomy.  It was determined that I have (or had) Stage IIIA adenocarcinoma.  The tumor was successfully removed, together with numerous lymph nodes, many of which were malignant.  The tumor was negative for PD-L1, although the immune cells were 5% positive for PD-L1. Regardless, the oncologist said I was not eligible for immunotherapy based on the PD-L1 results.  He wants me to start a regimen of Tarceva and I am hesitant to do so based on the reported side effects.  I am a 68-year-old caucasian female and the results of a recent CEA rest showed 1.0.  The test indicated that anything less than 2.5 in a non-smoker is "normal" and I am taking that to mean "cancer free."  I am so confused and overwhelmed.  Any advice?

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Hi Helen and welcome.

I don't know the answers to your questions. There are some forum members who probably do, and i hope you'll hear from them. My only advice is to keep asking questions (including of your oncologist until you get answers that make sense to you. If you don't like or don't understand what your onc is telling you, a second opinion is an option. Are you being seen at a major cancer center? 

Hang in there!

Bridget

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Hi, Helen, and welcome.

No, the results do not mean you're "cancer free."  The fact that cancer was found in your lymph nodes means it has spread, and that's also what the staging tells you.  The lobectomy removed the primary tumor, but not the cancer cells that have spread to your lymph nodes (and possibly other parts of your body).  So you will need to have some kind of drug-based therapy to kill those other cells.  

Not everyone experiences the same side effects, nor with the same intensity.  Side effects can be managed--there are lots of folks here who can give you tips for ways to do that.

I hope you will continue with treatment.  Cancer treatment is improving all the time, and you could have many, many years of life ahead of you if you opt for treatment.

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Thank you Bridget0 and LexieCat.  I am getting increasingly depressed.  I don't feel strong enough to weather the storm as it were.  Maybe after I have the stent placed in my right coronary artery on Tuesday -- if I survive that -- I will feel better, but right now I am overwhelmed.  I am very anxious about starting Tarceva and the prospect of becoming even more tired and nauseated.  Also, I'm not sure if I can qualify for payment assistance from the drug manufacturer and I darned sure can't afford to pay a $4,000 monthly co-pay.  I'm not the type for pity parties, believe me, but I'm about ready to throw in the towel.  Should I try to enroll in a clinical trial, assuming there is one available nearby to where I live?  I am currently running a small animal rescue organization by myself and I need to continue working at my paralegal job in order to afford my supplemental private insurance.  Sigh.  

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I'd suggest talking with a social worker or patient advocate or patient navigator at the place where you're receiving care.  They often know about ways to help pay for care.  There's almost always a way to do it.  

Hang in there, but do reach out and let people know who might be able to help.

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Hang in there< Helen. Are you taking an antidepressant. A lot of cancer patients and survivors, including me, find them helpful in coping with cancer and treatment. 

Bridget O

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Thanks, ladies.  Yes, I am taking Wellbutrin.  I'm going to focus on one thing at a time.  Have to have a stent placed in my right coronary artery next Tuesday, the 13th, and I may not have to worry about my silly old cancer after all!  hehehe

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May you live long and prosper! There is life after and with cancer. I'm 73, have had two other cancers besides my lung cancer, one of them Stage 3 and with a "dismal prognosis". And here I am today, NED (no evidennce of disease) on all 3 cancers.  I have some long term side effects from treatment, but my life is good, I travel (when I can afford it!) and I'm getting ready to start a new part time job, to add to the travel fund. So don't throw in the towel. I look forward to hearing how the stent procedure goes.

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Hi, Helen,

I'm glad that you've connected with some of our members. If you have questions or would like information about lung cancer treatment and managing emotional and financial challenges, the LUNGevity Lung Cancer Helpline is a fantastic resource. The Helpline offers toll-free, personalized support from oncology social workers. You can receive referrals to financial assistance resources for needs including pain medication, homecare, childcare, medical supplies, transportation for treatment, and copayment assistance. The number is 844-360-LUNG (5864), Monday through Thursday, 10:00 am to 6:00 pm, and Friday, 10:00 am to 5:00 pm Eastern time.

I'm also happy to provide you with information about LUNGevity's other patient education and support programs. We are here for you!

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

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Helen,

Keep things simple: stent first, lung cancer second. 

Take care of yourself. Talk to medical professionals about depression. 

I assume you have adenocarcinoma. Tarceva is very effective for those with the right markers. I took it in concert with my Taxol and Carboplatin chemotherapy in 2005. But when I took it, doctors didn’t realize it only worked for adenocarcinoma. My NSCLC is Squamous cell. At the time, the script price was $3,000 per month. I managed both the cost and side effects (not pleasant). I knew a lady who took Tarceva for 10 years and it stopped her lung cancer.  So, when it works, it works well. 

Email the pharma company. There is a link on the website. You’ll find they will take into account your financial circumstances. 

So stent, mental health and lung cancer in that order. You’ll get through this. 

Stay the course. 

Tom

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Thank you Lauren H. and Tom Galli.  You are correct, Tom.  I have stage IIIA adenocarcinoma, EGFR positive, negative PD-L1 in the primary tumor.  Supposedly ineligible for immunotherapy and frankly extremely anxious about potential side effects of Tarceva.  Seeing the oncologist on Monday, immediately following the stent pre-op.  Wish me luck!

Thanks to both of you for your responses.

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On 11/7/2018 at 4:51 PM, HelenHJ said:

Thanks, ladies.  Yes, I am taking Wellbutrin.  I'm going to focus on one thing at a time.  Have to have a stent placed in my right coronary artery next Tuesday, the 13th, and I may not have to worry about my silly old cancer after all!  hehehe

A lot of people have stents these days. I have worked as a paramedic for 20 yrs. It is nerve racking to be waiting for a stent without cancer. I can only imagine your fears with it all added together. That's normal and I think you are doing good. Sounds like they are on top of things. I think you are right by taking one step at a time. After the stent then worry about the next step. You will stronger after recovery from stent. I have seen many pts feel so relieved after . I think you are stronger than you think. I hear some great advice being given too. Take our strength and prayers with our love and slowly walk through this. You got this you know. 

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Seventhson,

Thank you so much for your kind words.  They literally brought tears to my eyes.  Even though I have a loving family and many, many wonderful friends, I feel so alone fighting this battle sometimes.  It is reassuring to be in touch with people who have "been there, done that" and I truly appreciate your message.

Hugs,

Helen

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You are not alone at all. It is my honour to be here for you in anyway like many here are for me. Together we can figure things out. We all together make a winning team. Hope all is well today. Glad we are on the same team. I hate loosing and think we got the winning team here. Hugs my new friend. 

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