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Living with lung cancer - Introduce yourself & come say hi
Lung Cancer | Last Active: Sep 25 12:58pm | Replies (1044)Comment receiving replies
Good idea Its been awhile since I've been on here at least posting on here I read it from time to time . Diagnosed adenocarcinoma non small cell stage 2A 2015, I had surgery resection and chemo following . Months later lymph nodes in the mid chest were enlarged due to cancer . The doctor said she believed that that it was there earlier but never showed on any scans they called it a local reoccurrence . I then had radiation x30 and chemo . My last scan was in January and everything was stable some nodules are being watched but are very small , too small to biopsy . I constantly worry ..especially right before scan which is coming up mid April I'm just keeping my fingers crossed and praying that all is good . The doctor said this was caught fairly early which I believe is a good thing . They did mutation testing and from what I understand all checked were negative .. i don't know if that's good or bad but that's all I know . It seems your life kind of stops once you're diagnosed and everything is put on hold at least mine has.. I lived with my son through the treatment and I'm thinking about getting my own place again and possibly even working part-time ,I can no longer hide behind a diagnosis .Online support groups have helped me in many ways . But I am looking for a face-to-face support group also . Will keep reading and try to post more often. I'm
from Milwaukee Wisconsin... . If anyone else is .but if so would like to hear from you. Hope all are doing well .....Thanks
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Hi Merilee-
I read with interest your post regarding the mutation study at the time of your surgery in 2015.
My wife had a bilobectomy of her right lung in 2015, after being diagnosed with stage IIIa NSCLC. Mayo-Rochesrer did a mutation study at that time, which was negative for the EFGR mutation as well.
After chemo, a subsequent recurrence, and no response to nibe rounds of Opdivo, last fall, Mayo-Jacksonville ordered a molecular study. From that, it was determined that my wife's lung cancer was a HER 2 mutation...common in breast cancer, but not so common in lung cancer patients.
They have now been treating her for the HER2 mutation.
You might want to discuss the the possibility of ordering a molecular study for you.
Hi Merilee:
Hope you are having a good day!
Cyber hug,
Linda
Thank you Linda..You have a great day also..Hugs. Merilee<br>
thank you Colleen for prodding me to tune in again. burrkay has hit on something that may be of great importance to me. Ive had a mutation panel for EGFR, KRAS,BRAF, ERBB2. NO mention of HER2. Thing is my Mother died of Breast cancer, double mastectomy and my sister, 10 yrs. younger, had the same Breast Ca. and a double mast. She survived and is doing very well. Her only C/O are the end results of the radiation and chemo. I did not qualify for any trial, because I never had any treatment so far over the 4 or 5 yrs. with this dis. Now there is one trial out there for people like ;me and I'm hoping to get on it, they feel I am a good candidate.
I have one more appt. for another opinion with an Immunologist and hope he will have some suggestion for therapy. Sometimes I'm so depressed, but I believe God has a plan for me and will get me through it if I work at it. Sometimes you just dont' know what to do next nor feel like doing anything because there is just nothing being done. I'm delighted to bring this information to the Immunologist. Hopefully there will be something to come of it. Thank you so much for your taking the trouble to write all this for your wife. BESTCARE.
Welcome back @bestcare.
I hope the information from @burrkay about HER2 proves to be helpful for you. In preparation for you appointment with the immunologist, I found this article in Medscape called "HER2-Targeted Drugs Useful in Some Lung Cancer Patients" http://www.medscape.com/viewarticle/803000. It was published in 2013, so there may be more up-to-date information available to your doctor.
I can understand that you struggle with depression in the face of lung cancer. In this, you are not alone. I encourage you to start a new discussion about this. Let's talk about it.
Please understand our determination that my wife had the HER2 mutation was the result of a molecular study ordeeed by our Mayo oncologist because she was not responding to the standard "bill of fare" for lung cancer patients.
The Mayo folks did the standard mutation study for EGFR, etc from the biopsies from surgeory. However the Mayo- Jacksonville oncologist later suggested that we needed a larger slide to do the study. That required a needle biopsy, then 4-6 weeks of computer analysis of her genomics.
My point is he prepared for more tests.
Best of luck!
You are in an amazing place with a brilliant team! I truly am inspired reading your journey together! What a great team you are! Bless you!
All my best
Linda
Colleen, Just so you know, I immediately went to my lab results and found no mention of HER2. All the other factors were tested and I am negative. But I am bringing this information from burrkay with me and plan to inquire about it. High priority on my Question List.Thank you for your inquiry re: burrkays info. I appreciate it and am grateful for people like burrkay to read and pass on any info or experience they may have had. I will gladly let you know the results of the visit and the Drs. response. Thank you again.bestcare
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Merilee Hi;-)
I am so happy you are sharing your journey. I somewhat understand your feelings because I am a 9 year lung cancer survivor. 1/11/2008 most of my left lung removed with a3cm tumor. Non small cell adenocarcinoma early stage.
I had a nodule hanging out in my right lung lobe for several years! May I share what I did to conquer the Returning LC Fear?
I was blessed to have a husband who said,"You belong out side, let's go!" Every day for at lest an hour we moved...out doors. At first I struggled to walk and breath as I took baby steps. I looked up at the sky and gave thanks ! The time outside and fresh air helped my lungs even when it was below zero!
One day...Mayo Oncology gave me the opportunity to be involved in Dr Amit Sood's Paced Breathing Research Study! AmaZing!!!
This study with a workbook and a Paced Breathing app, I feel, helped calm my fears.
By taking time out "15 mins" a day or more and Connect my Body, Mind and Spirit
I told my body to calm, & my nervous system relax , as I breathed in and out, ever so slowly...While I envisioned the nodule disolving and the cancer staying away.
How many times are we given permission to face lung cancer? &Be happy while we go through this challenge? Especially when we discover Beating The Odds can be our biggest challenge? Yikes!!!
So Girlfriend, I want you on my team! Think of me holding your hand once a day; thinking with you as you blow cancer away with every deep breath you take ! This practice helps core and diaphragm;-) too.
Will you 'please' keep me posted?
Hugs
Linda