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Living with lung cancer - Introduce yourself & come say hi
Lung Cancer | Last Active: Jan 22 8:18am | Replies (1013)Comment receiving replies
It's been awhile! Thank you Colleen for moderating and Linda for participating as an amazing survivor of NSCLC!
My wife continues with her treatment of the trial doublet herceptin/perjeta (sponsored by Genetech); which was recommended by Mayo for her unusual stage IV lung cancer with the HERR2 mutation. She has now had 4 infusions and just today had a scan and echo gram to check her progress before continuing with her treatment next week.
As you know, her non small cell lung cancer was diagnosed in April, 2015 and she underwent a VATS bi-lobectimy of her right lung Mother's Day that year. After having previously had Cisplatin chemo and nine rounds of Opdivo, she now amazingly tolerates the new doublet well.
We pray for good reports next week.
If there is one thing we have learned from all this, it's that we now live "one day at a time"! Not planning too far out, we have booked a cruise in May with the hopes that she can tolerate being spoiled for two weeks before returning for more infusions!
God bless all the cancer patients/survivors, and God bless the good people at Mayo- Rochesrer and Mayo-Jacksonville. And God bless our local oncologist and staff here in South Carolina for ther very professional on-going care.
Replies to "It's been awhile! Thank you Colleen for moderating and Linda for participating as an amazing survivor..."
I commend you on your great team support! My husband has provided my greatest support. He drug me out for walks
Saying "you belong outside" right after my the 2009 VATS surgery that removed most of my left lung and a 3 cm tumor!
I later learned walking helped my lungs rebuild and gave me more energy!!! Can you believe it?
Have you experimented with "Paced Breathing"? It really helped me. And continues to be my"go too" when I get LC nerves! Ha! It's the min, body & spiritconnection while I blow cancer away
With Paced Breathing practice.
Have you read "Happiness" by Dr Amit Sood? I have a feeling you both would like this read. Let me know, ok? This practice really gave me permission live one day at a time, with gratefulness and HOPE ina whole new way;-)
Keep up the great teamwork! Give each other a big hug...everyday! I'm thinking of you both!
Hugs
Linda
Hi Collen-
Yes the HER2 mutation in lung cancer patients is unusual- less than 1% have it!
Our Mayo oncologist in Jacksonville found it by ordering a molecular study last fall, after my wife had not responded to nine rounds of Opdivo therapy.
It took 6 weeks to get the report back, but well worth the efforts. Mayo-Rochester had done a mutation study on the tumor in 2015 when they did a bilobectomy. However, our Jacksonville Mayo oncologist still felt the molecular study would lead to a possible root cause! HE WAS RIGHT!
She gets her infusions every three weeks. She has had three infusions to date. If last Wednesday's scans show progress, she will get a fourth herceptin/perjeta doublet next week.
We have an appointment on Monday, March 6th with our local oncologist here in South Carolina to get the scan results. Until then, prayers and hopefulness!
Thanks Linda!
I have given her a copy of the book.
I have encouraged her to get outside and walk, etc., but so far not much luck. She is still quite active with house work, card clubs, etc., which helps. However, she has never been much for walking...not obese, etc., but she is just not a walker.
Her breathing is fine...amazing as it may sound.
I have shared your "paced breathing" approach with her. Her response was "she did not have a recurrence of her cancer"...I will keep trying to encourage it however. I am a believer in exercise... I golf 2-3 times every week!
My wife used to golf, but the tumor lumps in her muscular system are keeping her from doing that. We live in a retirement community, and lots of activity including golf is available to keep us going!
Thanks for sharing...
Great effort! Thank you for your update. I do respect and understand. It can be so difficult to move the lung(s). It took me three years to move like a human... as a matter of fact, what really motivated me was the conversation with my life insurance company when I was told,"your policy has been cancelled (they had cashed my check) and then they said, "according to statics, I should be dead"! That made me so mad, I got up and got moving!
I was never a runner before lung cancer.
If you want a few laughs, perhaps you can both watch my (14 min) TED x Ideas Under The Big SkyTalk? It just came out 2 weeks ago on UTube,LindaWortman
Will you let me know what you think?
Thanks again for sharing & Never give up!
Linda
Thanks Linda-
We will look at the TED video...but first I must express my dismay over your life insurance having been cancelled! That is unreal! How can that be? Especially after you had paid your premium. Had you owned the policy long?
It's on my Ted talk...
Lw
Here's the link to Linda's TEDxBigSky Ted talk.
- Beating the Odds: Climbing Mt. Kilimanjaro with One Lung https://www.youtube.com/watch?v=o3np0vU7FGg
Here's information about MyBreath app that Linda mentions in the TED talk.
http://www.breathresearch.com/mybreath-app/
Thanks for the additional information @burrkay. So grateful your oncologist persisted and found the molecular root cause. I'll be thinking about you and your wife on Monday. Please update us when you can.
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Good to hear from you Burrkay. I'm familiar with the HER2 mutation in breast cancer, but have just been reading about it in lung cancer. Great news to hear that your wife is tolerating the new treatment well. How often does she have the infusions?