MzShanon

Hi Katum! Your situation sounds very much like my mom’s situation. Her cancer diagnosis started with the malignant pleural effusion. It also looks like my mom has the EGFR exon 20 mutation. Can I ask if your mom has started any clinical trials and if she is still doing well? 

@Judy M2I recently read about Sunvozertinib as well. This looks very promising! Thank you for sharing!

@Judy M2I recently read about Sunvozertinib as well. This looks very promising! Thank you for sharing!

@Judy M2I recently read about Sunvozertinib as well. This looks very promising! Thank you for sharing!

@Karen_Lthank you and I have reached out to Marcia and joined these Exon 20 Facebook groups. They have definitely been extremely helpful! 

I just shared this with the EGFR Resisters Group on Facebook (I'm not in the Exon 20 group). A local oncologist recently presented the findings. One of the EGFR members is in this trial. In California it's available in San Diego, Irvine and Whittier. 
https://www.targetedonc.com/view/sunvozertinib-shows-activity-and-tolerability-in-egfr-exon-20-nsclc

@Karen_Lthank you and I have reached out to Marcia and joined these Exon 20 Facebook groups. They have definitely been extremely helpful! 

Hi everyone so my mom’s biomarker testing came back and she has NSCLC with a Exon 20 insertion mutation. We are trying to get her into a clinical trial for targeted therapy, but I know this mutation is harder to treat and there aren’t as many drugs for this. Where can I get support and resources about this mutation? 

Thank you Tom and Judy for your responses! My mom definitely needs to get her COVID booster, flu and pneumonia shots done. Hopefully she can get those during her primary care visit. At the hospital she had the two thoracentesis procedures, enhanced Ct scans (chest and stomach), and a biopsy done. All of those are still pending. Is it normal to be waiting awhile to receive that information? 

Hi Katum! Your situation sounds very much like my mom’s situation. Her cancer diagnosis started with the malignant pleural effusion. It also looks like my mom has the EGFR exon 20 mutation. Can I ask if your mom has started any clinical trials and if she is still doing well? 

MzShannon,
NSCLC adenocarcinoma EGFR Exon 20 insertion can be a tough nut to treat. Here is a good synopsis of the condition as well as information about the newly FDA approved drug Rybrevant (amivantamab-vmjw) that may be effective.
Our Lungevity Foundation offers two kinds of support resources that might be of help to your mother. Here is the link to Peer-to-Peer mentoring that includes LifeLine Support and Clinical Trial Ambassadors. The former are patients with the same or similar type of disease as your mother that can share treatment experiences on a one-on-one basis and the latter is help in identifying clinical trials that are starting for Exon 20 insertions.
I do hope your mom has a good outcome.
Stay the course.
Tom

Hi everyone so my mom’s biomarker testing came back and she has NSCLC with a Exon 20 insertion mutation. We are trying to get her into a clinical trial for targeted therapy, but I know this mutation is harder to treat and there aren’t as many drugs for this. Where can I get support and resources about this mutation? 

Hi everyone so my mom’s biomarker testing came back and she has NSCLC with a Exon 20 insertion mutation. We are trying to get her into a clinical trial for targeted therapy, but I know this mutation is harder to treat and there aren’t as many drugs for this. Where can I get support and resources about this mutation? 

Got the surprise of my life on February 20. A healthy 60 year old non-smoker diagnosed with lung cancer, later to learn it had spread to 3 other areas, including my brain. However, Tarceva (and perhaps radiation) has done a wonderful job at pushing it back for now. I decided to go public with my illness and put a positive spin on it, to help myself, family and friends to better cope. Below is the blog I've been keeping up to date.
Craig

Thank you Tom and Judy for your responses! My mom definitely needs to get her COVID booster, flu and pneumonia shots done. Hopefully she can get those during her primary care visit. At the hospital she had the two thoracentesis procedures, enhanced Ct scans (chest and stomach), and a biopsy done. All of those are still pending. Is it normal to be waiting awhile to receive that information? 

MzShannon, it's really vital to wait until all test results are in so that your mom's doctor can create the appropriate treatment plan. You wouldn't want to start a treatment only to find it was the wrong one or unnecessary. There are so many treatment options these days. One thing cancer teaches us is how to wait. It's a hard lesson, to be sure. 

MzShannon,
Lung cancer biopsies are 2 types these days: a histology examination performed by a pathologist, and a follow up laboratory test to check for targeted therapy and immunotherapy suitability. The former (histology) ought to be almost immediately available because it consists of looking at cells under a microscope. The histology biopsy ought to disclose the type of lung cancer, and this information should be in your mom's medical record now.
Lung cancer comes in 2 types, small cell and non small cell. Non small cell lung cancer has two sub-types: adenocarcinoma and squamous cell. Some forms of adenocarcinoma are treatable with new therapies, termed targeted therapy. Here is information on targeted therapy treatment.
The laboratory biopsy also tests for suitability for a new type of treatment called immunotherapy. This part of the test identifies a cellular expression called PD-L1. If the biopsy exhibits certain ranges of PD-L1, then immunotherapy may be a suitable treatment. Here is information about immunotherapy. Immunotherapy can be used to treat both small cell and non small cell (both adenocarcinoma and squamous cell) types. 
Laboratory biopsy results often take about 14 days to generate. Targeted treatment and immunotherapy are game changes in treating lung cancer and often these therapies are used in first line (first treatment) treatment plans. So treatment is normally delayed until the laboratory biopsy results are in hand.
Stay the course.
Tom

Thank you Tom and Judy for your responses! My mom definitely needs to get her COVID booster, flu and pneumonia shots done. Hopefully she can get those during her primary care visit. At the hospital she had the two thoracentesis procedures, enhanced Ct scans (chest and stomach), and a biopsy done. All of those are still pending. Is it normal to be waiting awhile to receive that information? 

We have been struggling with my mom’s insurance plan. She has Medicare HMO and the treatment center she wants to go to doesn’t accept her insurance, we have to wait until January a new healthcare plan to take into effect. Meanwhile, we will be seeing an oncologist on November 15th and a new primary physician hopefully in the coming week. What can we possibly do during this time as we wait? She was discharged from the hospital, but her pleural effusion hasn’t gone away. She still has a cough but so far remains stable. We still don’t have a diagnosis yet, but since the fluids came back malignant we are assuming we are looking at late stage cancer. What should we be discussing with her new primary? 

We have been struggling with my mom’s insurance plan. She has Medicare HMO and the treatment center she wants to go to doesn’t accept her insurance, we have to wait until January a new healthcare plan to take into effect. Meanwhile, we will be seeing an oncologist on November 15th and a new primary physician hopefully in the coming week. What can we possibly do during this time as we wait? She was discharged from the hospital, but her pleural effusion hasn’t gone away. She still has a cough but so far remains stable. We still don’t have a diagnosis yet, but since the fluids came back malignant we are assuming we are looking at late stage cancer. What should we be discussing with her new primary? 

We have been struggling with my mom’s insurance plan. She has Medicare HMO and the treatment center she wants to go to doesn’t accept her insurance, we have to wait until January a new healthcare plan to take into effect. Meanwhile, we will be seeing an oncologist on November 15th and a new primary physician hopefully in the coming week. What can we possibly do during this time as we wait? She was discharged from the hospital, but her pleural effusion hasn’t gone away. She still has a cough but so far remains stable. We still don’t have a diagnosis yet, but since the fluids came back malignant we are assuming we are looking at late stage cancer. What should we be discussing with her new primary? 

My mom was admitted to the ER recently and hospitalized for 6 days. She had a pleural effusion in her left lung so they had two thoracentesis procedures done and a biopsy. The doctors are pretty much telling us it’s cancer and likely late stages. She is currently at home waiting for an oncology appointment. I am extremely anxious and completely terrified. The wait is killing me and I’m overwhelmed with grief. Any advice or help is appreciated. I am the eldest in the family and it’s just my mom and my younger brother. I’m trying to hold it together for us. 

My mom was admitted to the ER recently and hospitalized for 6 days. She had a pleural effusion in her left lung so they had two thoracentesis procedures done and a biopsy. The doctors are pretty much telling us it’s cancer and likely late stages. She is currently at home waiting for an oncology appointment. I am extremely anxious and completely terrified. The wait is killing me and I’m overwhelmed with grief. Any advice or help is appreciated. I am the eldest in the family and it’s just my mom and my younger brother. I’m trying to hold it together for us. 

We have been struggling with my mom’s insurance plan. She has Medicare HMO and the treatment center she wants to go to doesn’t accept her insurance, we have to wait until January a new healthcare plan to take into effect. Meanwhile, we will be seeing an oncologist on November 15th and a new primary physician hopefully in the coming week. What can we possibly do during this time as we wait? She was discharged from the hospital, but her pleural effusion hasn’t gone away. She still has a cough but so far remains stable. We still don’t have a diagnosis yet, but since the fluids came back malignant we are assuming we are looking at late stage cancer. What should we be discussing with her new primary? 

Hi Everyone!
I'm sorry it's been a long time since I posted an update to my stage IV NSCLC story but here it is. After being told that I was non-surgical  because of being stage IV I am here to tell you that my oncologist and I have decided that the end of November will be my last treatment. After 3 1/2 years of chemo, Keytruda, SBRT radiation and finally a left upper lobectomy and 2 years of clean scans and more Keytruda I am being set free. November 4 will be 2 years that I am NED. I can't believe it. Stage IV and now NED for 2 years. I feel like the luckiest person on the planet. It just goes to show that treatments are getting better and patients are living longer. Never give up. NEVER. 
Thanks for all the support through this insane journey. I love you all.
Claudia