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Diagnosis August 13th: Stage 3A Non small cell squamous cell carcinoma.


Melody Belloff

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My name is Melody.  I am 65 years old and I live in Arizona. 

On October 27th after chemotherapy and radiation treatments, I was hoping to take immune therapy.  The cancer metastasized to 4B after the CT scan and Petscan results were read.  There has been pain for the past several weeks because the cancer is also now in my bones and neck.  I am waiting for the CARIS biomarkers in order for the oncologist to proceed to other treatment options. 

 I am very grateful to have been able to take Medicare in August of 2020.  It was a surprise to learn after the initial diagnosis that managing the insurance company and the doctor's billing was a full-time job the past 6 months. 

I hoped to be moving on to Immune therapy when the CT scan showed metastasis.  I was told 75 to 85 percent of people with my diagnosis and treatment moved on to immune therapy.  The tissue pathology now shows non small cell adenocarcinoma stage 4B.   I now wait to find out if I have two types of cancer while realizing that my prognosis is now terminal from being able to cure.  The CARIS biomarker which was taken from a piece of my lymph node will help determine whether chemotherapy, immune therapy or hormone therapy is the best direction to proceed to fight the cancer. 

I engaged Hospice Care this week for the palliative care program which will helps with cancer resources with a social worker if needed.  I set up my DNR and Medical Power of Attorney and am hoping to finish my will this week.  Although I hope for time, especially if the time does not include pain, I want to be prepared because I have had family members who died of cancer. 

I joined a lung cancer support group in Arizona which is where I learned of lungevity as a resource for patients with lung cancer.  

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Hi Melody: Welcome to our group. Sorry about  your new diagnoses and I hope the Biomarker test will find a treatable mutation. That was a bad timing.  It seems like you took all the right steps to get things in order especially engaging hospice. They are very helpful even though I hope you won't need them. When you get the test results back  and when your medical team decides on a course of action please let us know.  There are people on this site with a lot of knowledge  that can share their experience and answer your questions. Meanwhile  I wish you the best.

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Melody,

Welcome here.

I note your progression after treatment, always disconcerting. I understand you are waiting biomarker testing. I trust the test will cover both targeted therapy and immunotherapy markers; be sure to ask your doctor about the test coverage.

Immunotherapy has changed the landscape for lung cancer treatment and in a dramatic way. Now, many people, here on this forum, are surviving stage IV diagnosis as a result of immunotherapy. Seeking palliative care for bone pain is a good step, and I'm sure the radiation will eliminate your pain symptoms. And getting personal affairs in order is always a good thing at anytime. But, I do believe there is a great deal of hope remaining concerning targeted therapy and or immunotherapy. Let's assess the biopsy results when received.

I normally provide this to newly diagnosed folks. I'm nearing 17 years of surviving my diagnosis and if I can live, so can you. Hope is so very important. Here is why.

Stay the course.

Tom

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