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Posts (73)

Dec 30, 2018 · Take a Moment to Embrace Gratitude This Season in Cancer Education Center

We are also grateful for the excellent care from both our Mayo team and our local oncologist…but most of all to God for guiding us on our journey!

Dec 30, 2018 · Talking Frankly about Living with Advanced Cancer in Cancer

Yes for sure! Agree…they are the best!

Dec 20, 2018 · Living with lung cancer - Introduce yourself & come say hi in Lung Cancer

Hi Margo-
So sorry you have to go through this…
@llwortman has some great insight!
If there is any way, my suggestion is to get to a lung cancer treatment clinic NOW! My recommendation is Mayo Rochester…or possibly Arizona. However, I would start with Rochester.
You need to get to a clinic while you are still strong!
I did a simple google search, in view of your inability to travel.
Do you know these folks? https://www.communitymedical.org/services/Lung-Services
Check them out if they are anywhere close and reputable! You would need a referral…
My wife went through similar dead end path with pulmonologist and finally our grown children forced us to take action and go to Mayo Rochester a two day drive. We put a letter together describing our diagnosis or lack thereof, packed up her records and fedexed the package to Mayo. Within 48 hours they concluded that she had Non Small Cell Lung Cancer!
Within two weeks my wife had two right lobes in her right lung removed with the VATS procedure….by the same thoracic surgeon that did Linda’s lung surgery! All, with “self referral” by mail and phone…and of course a two day drive to get there!!
That was in 2015…three years later, she enjoys a goodbquality of life with stage 4 metastatic lung cancer, thanks to Mayo and her strength and stamina, and of course a strong faith in God!
Do the lung biopsy at a lung cancer clinic such as Mayo…then have a molecular study of the specimen to determine the EXACT mutation you have.
Best of luck to you and your family with getting through this stressful time!

Dec 18, 2018 · stage 4 inoperative squamous nsclc now on opdivo last line tx in Lung Cancer

Agreed..very important.
Living in a retirement community we witness lots of grief by the loved ones left behind. “Grief Share” is very important and helpful!

Dec 18, 2018 · stage 4 inoperative squamous nsclc now on opdivo last line tx in Lung Cancer

Our thoughts and prayers to you and your family Mary Lou.
Thanks for sharing this part of your journey.

Dec 16, 2018 · Metastasized lung cancer in Lung Cancer

Hi Tracie
So sorry to hear that you father is so Ill. Best to talk with his oncologist about his care.
However, I can tell you there is hope for stage 4 lung cancer patients…with the many new therapies that seem to become available every week.
Your father needs your love and your care, albeit from afar. If your father does not wish to have intervention, you need to respect his decision. Just let him know you are there for him.
In our case, our faith in God helped us through many difficult times, since the onset of my wife’s stage 4 metastatic lung cancer in 2016. Unlike you father, my wife elected intervention with the medical excellence at Mayo Clinic. With the immunotherapy she gets, her quality of life is very good, and we take it “one day at a time”, knowing at any time it all can change.
Sorry I could not be more helpful. Hope you find the answers to your questions about steroidal treatment.

Nov 10, 2018 · Talking Frankly about Living with Advanced Cancer in Cancer

Thanks Linda hope you are both doing well!

Nov 10, 2018 · Talking Frankly about Living with Advanced Cancer in Cancer

Hi Colleen – I found my way to this discussion somehow. I wasn’t aware that it existed, but thank you for initiating it.
As you know, my 76 year old wife – Kay, has stage 4 metastatic NSCLC, and seems to be coping well with it…under her post op immunotherapy treatments..on-going since December, 2016. WE ARE BLESSED! KAY was diagnosed in April, 2015.
I can only say that KAY has a positive attitude, rarely complains and keeps busy with housework, and participating in her many card clubs and social gatherings. She plays golf with her group of gals on Mondays, and even helps with the yard work. She is a great cook!
Initially, she backed off on many of those activities…but says that she now believes if she slows down too much she will die! Fortunately, her infusions every three weeks leave her with minimal side effects!
We both know that her days may be numbered but choose to not dwell on that. Rather, we take life “one day at a time”…we spend time with family and friends and try to dwell on the positives! When asked about her disease, we try to explain it factually and then move on to the positive elements of our lives,
We try to help others understand the importance of listening to our bodies! If you have issues do not ignore them. If you go to a doctor for care and don’t like his/her strategy or answers get another opinion. This is so important! We got caught up in the pertuity of care with a pulmimologist who simply refused to admit that KAY had lung cancer. This went on for approximately 15 months and resulted in an unnecessary surgery for” gastro issues”!
She says her Bible study group participation has helped her immensely! She recommends that type of support to everyone living with advanced lung cancer! Her faith in God has helped us both!
We also believe the molecular study was crucial to determining her therapy. Had Mayo not ordered that study, we believe KAY would have by now been long gone!
We are here for anyone who wishes to talk!