Living with lung cancer - Introduce yourself & come say hi
Welcome to the Lung Cancer group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with lung cancer or caring for someone with lung cancer. Let's learn from each other and share stories about living well with cancer, coping with the challenges and offering tips.
I'm Colleen, and I'm the moderator of this group, and Community Director of Connect. Chances are you'll to be greeted by volunteer patient Mentors and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.
We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let's chat. Why not start by introducing yourself?
Interested in more discussions like this? Go to the Lung Cancer Support Group.
All good here, i have been trying to start walking again...not long distances but at least a few blocks...I have another scan coming up a week from Monday..I get so scared and nervous about it..Its like i put things on hold till i have it..crazy right......Think i am the only one here from Wisconsin.?? Hope is well with you....
Dear liv:
MayoClinic has some Lung cancer interviews with visuals that have been helpful for me.
Dr Stephen Cassivi -Thorasic Surgeon, and
Dr David Midthun -Pulmonologist &
Dr Ping Yang - Lung Cancer Research...who also wrote a brilliant 19 page research paper that was posted Feb 2016.
We are blessed th have such brilliant and dedicated and compassionate human beings doing this amazing work!
Let me know if this was helpful? Bless you! Glad you decided to CONNECT!
linda
Would like to view some of the videos on this topic but I need some text as well. Are there any with text available at the present time?
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
Awesome!!! Your attitude will create the next great chapter in your life. Wow great story thank you! Life is a gift, and we have a choice to treat it that way. Loved your post. : )
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
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!
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.
@bestcare
Welcome to connect. Thank you for sharing your story with such openness. I am a 9 year lung cancer survivor. I have an understanding about what you may feel. You are not alone. I hope by sharing I can help you find a way to rise above the fear.May I share a little about my story ?
Jan 2008most of my left lung and a 3cm tumor was removed just days after Mayo Clinic properly diagnosed my shoulder pain, annoying cough, night sweats...I have a feeling you understand?
I had these symptoms for at least two years, but my local docs found nothing. That was in the year 2008, when most everyone thought, Ih you got lung cancer? You smoked! Well I never smoked.
Now I can continue to "thank Mayo Clinic Teams", at all of my follow up apts for saving my life!...I am equally, deeply grateful to the Lung Cancer researchers who answered my question, Why did I get lung cancer?"
About three years ago I jumped at the chance to have my 3cm tumor tested. I had a mutated EGFR gene! I did not pass lung cancer to my children & I did not get this gene from my parents! Whew!
So I cannot wait for researchers to find what's behind the EGFR and other mutation, and one day find a cure.
Because of this cancer roller coaster,I have learned the importance of rising above the fear that may bring depression. So I go for walks, even in the rain & cold! I tell my body to relax when I breath deep! And I continue to blow cancer away! I've even found relief with complimentary medicine.
Now we have Connect! Great to meet you.
Linda
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Hi Burrkay and Linda,
This is thrilling to see that you guys are making this happen. Bill, you'll notice I removed your personal contact information from the public space and connected you and Linda by private message. Sharing your email and phone number is safer by private message.
Good luck with your arrangements. Be sure to record it and share it!
Colleen