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New to NSCLC W/ BIOMARKERS PDL-1, PTEN, CDKN2A, MLL3, TP53 AND MYC AMP Anyone else? Now on IMFINZI


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Hello.  I am new here and was diagnosed with NSCLC Squamous cell type, in Sept. 2021. I am 64 years old and a  very active and healthy person prior to all this  I was misdiagnosed for over 9 months with Post Herpetic Neuralgia and the cancer was found by chance  after my pain doctor ordered an MRI due to longstanding shoulder pain and hand weakness and a rash. A large 9 cm tumor in the apex of my right lung was found.  It was not operable due to location near my spine per a neurosurgeon.  Initially my oncologist gave me "months" to live  and guessed my cancer was at stage IV.   I started Carbo/taxol immediately but after 6 weeks (2 chemo rounds) and multiple CT scans, MRI's, a  Pet scan and a biopsy, it was discovered that though the tumor was large it was isolated in the right lung with some small mets to the mediastinal and clavicle nodes but hadn't progressed as first thought.  A curative intent plan was presented to me and I chose to do concurrent chemo/radiation for 6 weeks.  I finished that on 1/25/21.  The large tumor shrunk about  2 centimeters and the questionable lymph nodes had just about disappeared or remained stable.  Just this week i pressed my oncologist about what stage the cancer is now and he said stage III.  I started Imfinzi 2 days ago. My PDL-1 marker was only 2% but still an indication that it might work. 

(Diagnosis:

1. right apical lung squamous cell carcinoma, involving the chest wall, ribs and T1-T3 vertebral bodies. PDL1 2 %. STRATA next generation sequencing showed PTEN, CDKN2A, MLL2, MLL3, TP53 mutations and MYC amplification.

2. Pancoast syndrome)

I am feeling great!  Shortness of breath (SOB) is the only issue keeping me from doing all I did before this happened. It looks like I have a couple areas of my lung that are collapsed  

Question: 1.  Does the SOB get better over time?  Is there anything I can do besides breathing exercises to help?  

2.  I have yet to find anyone with similar biomarkers to mine.  Anyone?  

3.  What is the difference between the ways that tumors are staged?   Prior to treatment my radiation oncologist staged me T4N3 which I know refers to the tumor size ""T" and "N" 3  lymph nodes involved. How does this correlate with Stage III?  I hope I am making sense.  LOL!  

4.  Could my tumor continue to shrink with Imfinzi?  

I have a very positive  outlook and a strong faith base.  

 

 

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Jamie,

Welcome here. I've very happy to learn you've completed your first line treatment, and the post treatment scan showed a reduction of your tumor.

To your questions: does SOB get better over time? I'll suggest two answers because both are relevant. Tumors in the lung destroy lung tissue and treatment does not restore that tissue. Therefore, after successful treatment, one will have less respiratory capacity. But that does not necessarily impact on fitness level or breathing efficiency. It is possible to improve one's aerobic capability after lung cancer treatment and aerobic exercise is the method for improvement. So shortness of breath can get better over time if you work to improve your aerobic fitness. Breathing exercises are valuable because they teach filling the lung to capacity with each breath. We are often "lazy" breathers. So training to fill the lung completely can eliminate shortness of breath. You can test this by using a pulse oximeter. Place one on your finger at rest and note your oxygen saturation percentage. Then start breathing deeply and note the near immediate improvement in O2 saturation.

On your question about biomarkers, the one's you cite are common with squamous cell carcinoma. Most information about biomarkers and Targeted Therapy  pertains only to a small percentage of those diagnosed with adenocarcinoma. Squamous cell does not responded to Targeted Therapy. But you do have a relevant immunotherapy marker (PD-L1) that is an indicator that your prescribed   Imfinzi or Durvalumab immunotherapy may work. I do hope so. By the way, we have a very comprehensive section in our forum that is devoted to discussion about Durvalumab. Find it here.

Lung cancer staging is relevant only in 2 instances: diagnosis database population and surgical treatment decisions. Everyone diagnosed in the United States becomes a statistic in a National Institute of Health cancer database, and the diagnosed stage is recorded as part of that data record. Lung cancer patients staging from I through IIIA can be evaluated as candidates for surgical treatment. Those diagnosed stage IIIB through IV are generally not treated surgically. When treatments reduces or eliminate tumors, one's staging does not decrease (say from Stage IV to Stage III). Your first line chemo-radiation was systemic therapy meant to address the entire body (chemotherapy) and the localized tumor (radiation). Systemic first line treatments are normally prescribed for those with stage IIIB and higher staging.

Could your tumor shrink with Imfinzi? Absolutely. It can shrivel up to nothing but scar tissue and I hope it does. Keep your positive outcome and avoid Dr. Google's survival statistics. They are not relevant and here is why. 

Stay the course.

Tom

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Jaime, greetings from San Diego. I have inoperable Stage IIIB adenocarcinoma with an EGFR gene mutation. Two years ago I had the exact same chemo and radiation treatments as you. Immediately afterward, I started on a targeted therapy. Because of my gene mutation, immunotherapy isn't considered to be effective. 

While our treatment plans now differ, I believe that chemo and radiation did the job of killing the cancer, and the targeted therapy is maintenance. It took me more than a year to finally get to NED (No Evidence of Disease) in April 2021. I think you can get good results from Imfinzi. 

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On 2/19/2022 at 3:04 PM, Tom Galli said:

Jamie,

Welcome here. I've very happy to learn you've completed your first line treatment, and the post treatment scan showed a reduction of your tumor.

To your questions: does SOB get better over time? I'll suggest two answers because both are relevant. Tumors in the lung destroy lung tissue and treatment does not restore that tissue. Therefore, after successful treatment, one will have less respiratory capacity. But that does not necessarily impact on fitness level or breathing efficiency. It is possible to improve one's aerobic capability after lung cancer treatment and aerobic exercise is the method for improvement. So shortness of breath can get better over time if you work to improve your aerobic fitness. Breathing exercises are valuable because they teach filling the lung to capacity with each breath. We are often "lazy" breathers. So training to fill the lung completely can eliminate shortness of breath. You can test this by using a pulse oximeter. Place one on your finger at rest and note your oxygen saturation percentage. Then start breathing deeply and note the near immediate improvement in O2 saturation.

On your question about biomarkers, the one's you cite are common with squamous cell carcinoma. Most information about biomarkers and Targeted Therapy  pertains only to a small percentage of those diagnosed with adenocarcinoma. Squamous cell does not responded to Targeted Therapy. But you do have a relevant immunotherapy marker (PD-L1) that is an indicator that your prescribed   Imfinzi or Durvalumab immunotherapy may work. I do hope so. By the way, we have a very comprehensive section in our forum that is devoted to discussion about Durvalumab. Find it here.

Lung cancer staging is relevant only in 2 instances: diagnosis database population and surgical treatment decisions. Everyone diagnosed in the United States becomes a statistic in a National Institute of Health cancer database, and the diagnosed stage is recorded as part of that data record. Lung cancer patients staging from I through IIIA can be evaluated as candidates for surgical treatment. Those diagnosed stage IIIB through IV are generally not treated surgically. When treatments reduces or eliminate tumors, one's staging does not decrease (say from Stage IV to Stage III). Your first line chemo-radiation was systemic therapy meant to address the entire body (chemotherapy) and the localized tumor (radiation). Systemic first line treatments are normally prescribed for those with stage IIIB and higher staging.

Could your tumor shrink with Imfinzi? Absolutely. It can shrivel up to nothing but scar tissue and I hope it does. Keep your positive outcome and avoid Dr. Google's survival statistics. They are not relevant and here is why. 

Stay the course.

Tom

Thank you so much for taking the time to decipher my post questions with a clear and positive response!  I will look at the links you provided.  I appreciate you very much and wish you the BEST!

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19 hours ago, Judy M2 said:

Jaime, greetings from San Diego. I have inoperable Stage IIIB adenocarcinoma with an EGFR gene mutation. Two years ago I had the exact same chemo and radiation treatments as you. Immediately afterward, I started on a targeted therapy. Because of my gene mutation, immunotherapy isn't considered to be effective. 

While our treatment plans now differ, I believe that chemo and radiation did the job of killing the cancer, and the targeted therapy is maintenance. It took me more than a year to finally get to NED (No Evidence of Disease) in April 2021. I think you can get good results from Imfinzi. 

Judy I am blessed by your positive response to my situation.  I am happy that you remain free from cancer spread!  All the best to you!

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  • 5 months later...

Jaime,

Keep an eye on the SOB. If it gets worse, you must call your doc and ask, demand, to be seen. Pneumonitis is a real concern with durvalumab (the generic name for Infinzi.) I started with durva and developed life-threatening pneumonitis. This is not to say you will-- some of us are just lucky that way. 🤪 

It sounds like your team is following protocols established per the Pacific study, although I believe that study was looking at adenocarcinoma not squamous cell. 

If you feel concerned, there are other treatment pathways available, too. A second opinion is always worth considering.

Karen

P.S. As Tom said, stages and other numbers, i.e., survival rates, are pretty meaningless once you've joined Team Lung Cancer. One day at a time is our motto. You've got this!

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