1. < Lung Cancer
Moderator

Living with lung cancer - Introduce yourself & come say hi

Posted by Colleen Young, Connect Director @colleenyoung, Mar 2, 2017

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.

sharwi85 | @sharwi85 | Dec 27, 2023
In reply to @lls8000 "Hi @sharwi85, I'm sorry that you and your husband are dealing with this, but I'm glad..." + (show)
@lls8000

Hi @sharwi85, I'm sorry that you and your husband are dealing with this, but I'm glad that you found Mayo Connect. There are many or us here with lung cancer, living generally good lives. There is hope!
I'm glad that you'll be seeing oncology soon. It's nice to have a plan, and to move forward. 5.3cm is significant. Did your husband have a PET scan? Do you happen to know if his tumor was sent for biomarker testing?, if not you may want to ask the oncologist.

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Thank you for the the response, yes he did get his PET scan done, it didn’t show any cancer other than his left lobe.Tumor was was sent for biomaker it came as :PDL1 . Tsp score 1%,HRD positive . No eveidence for EGFR….
Pathology report found cancer cell in Viseceral pleura
Oncologist suggested with chemotherapy of 4 cycles with Cisplatin and Alimta .

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1 reply
sg | @sglaza | Dec 28, 2023
In reply to @sharwi85 "Thank you for the the response, yes he did get his PET scan done, it didn’t..." + (show)
@sharwi85

Thank you for the the response, yes he did get his PET scan done, it didn’t show any cancer other than his left lobe.Tumor was was sent for biomaker it came as :PDL1 . Tsp score 1%,HRD positive . No eveidence for EGFR….
Pathology report found cancer cell in Viseceral pleura
Oncologist suggested with chemotherapy of 4 cycles with Cisplatin and Alimta .

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Good luck to you and your husband as he goes through that chemo protocol. As I stated previously it can be a challenge but as a team you can get through it (my wife was indispensable when I went through my chemo treatments). He will learn how to control the chemo symptoms through the medications that he will receive and make sure you share all the symptoms with the oncologist at every pre infusion check-up.

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layla123 | @layla123 | Dec 30, 2023
In reply to @pb50 "Hi. You are in a good place here - There are a lot of us here..." + (show)
@pb50

Hi. You are in a good place here - There are a lot of us here who understand what you have been and are still going through. I had a 1.5cm mucinous Adenocarcinoma removed 7 months ago in a left lower lobectomy. Margins and lymph nodes were all clear.
So you and I are very very lucky.
How was yours discovered? Mine was picked up 5 yrs ago in a routine screening. It was only 6mm then. By last April it was 14mm so they recommended removal. I will have CTs every six months for five years so I don’t really worry about it returning without me being aware.

What kind of cancer did yours turn out to be?

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Hi Pam, I also had a mucinous Adenocarcinoma in the LR lobe. It was removed 7 months ago. I had robotic surgery. It was tough for awhile after surgery felt like I had a bra on 3 sizes too small. Gabapentin and lidocaine patch helped a lot. You are the first person I’ve come across with a mucinous Adenocarcinoma.

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2 replies
pb50 | @pb50 | Dec 30, 2023
In reply to @layla123 "Hi Pam, I also had a mucinous Adenocarcinoma in the LR lobe. It was removed 7..." + (show)
@layla123

Hi Pam, I also had a mucinous Adenocarcinoma in the LR lobe. It was removed 7 months ago. I had robotic surgery. It was tough for awhile after surgery felt like I had a bra on 3 sizes too small. Gabapentin and lidocaine patch helped a lot. You are the first person I’ve come across with a mucinous Adenocarcinoma.

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Fascinating. I understand it’s a relatively rare type of adenocarcinoma. I’m still dealing with rib and diaphragm pain since my surgery. Sadly, Gabapentin and I didn’t get along

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layla123 | @layla123 | Dec 30, 2023

Hang in there it will get better. Stretching and yoga has helped me a lot. Also, Whenever you are in the shower or a hot tub do a few side stretches.

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1 reply
pb50 | @pb50 | Dec 30, 2023
In reply to @layla123 "Hang in there it will get better. Stretching and yoga has helped me a lot. Also,..." + (show)
@layla123

Hang in there it will get better. Stretching and yoga has helped me a lot. Also, Whenever you are in the shower or a hot tub do a few side stretches.

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Great idea!!

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mikee2all | @mikee2all | Jan 8 11:21am

My name is Mikee, I am 77 and have been diagnosed with stage 4 lung cancer. I have been put on the medication Tragrisso. Has anyone been on this medication and what is the outcome?

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2 replies
Merry, Alumni Mentor | @merpreb | Jan 8 12:22pm
In reply to @mikee2all "My name is Mikee, I am 77 and have been diagnosed with stage 4 lung cancer...." + (show)
@mikee2all

My name is Mikee, I am 77 and have been diagnosed with stage 4 lung cancer. I have been put on the medication Tragrisso. Has anyone been on this medication and what is the outcome?

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Hello Mikee. (@franciekid; @flusshund )

Welcome to Mayo Clinic Connect. How long have you been on Tragrisso? Have you had an side effects as yet?

Merry

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Matthew K | @flusshund | Jan 8 12:57pm
In reply to @mikee2all "My name is Mikee, I am 77 and have been diagnosed with stage 4 lung cancer...." + (show)
@mikee2all

My name is Mikee, I am 77 and have been diagnosed with stage 4 lung cancer. I have been put on the medication Tragrisso. Has anyone been on this medication and what is the outcome?

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Mikee,

Sorry to hear you've joined the club. I'm guessing you mean "Tagrisso". If not, you can stop reading. 🙂

I'm 63-years-young and have been on Tagrisso for over 3 years. So far, the primary outcome has been that I've been lung cancer-free for 3 years. I have to add the qualifier because a whole-body dermatological scan found a basal cell carcinoma on my cheek that was removed last month.

The only long-term side effect I've experienced is brittle fingernails. 10mg of Biotin daily has helped. Initially, I had the usual diarrhea, plus low sugar and sodium levels. The sugar levels corrected themselves. I was taking up to 2 Imodium a day at one point, but that faded and disappeared after about 6 months. My sodium level was around the minimum normal since before I had cancer, but it got worse. Today I limit my fluid intake to no more than 50 to 60 oz (1.5 to 1.8 liters) of fluid per day, as recommended by my Nephrologist. As long as I do that, my levels are OK.

I had other symptoms that I suspect or know were not due to Tagrisso. My lung cancer metastasized to my brain, and I started Tagrisso a couple of months after having brain surgery.

Let me know if you have any more questions, and I'm wishing you the best!

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1 reply
mikee2all | @mikee2all | Jan 8 1:14pm
In reply to @flusshund "Mikee, Sorry to hear you've joined the club. I'm guessing you mean "Tagrisso". If not, you..." + (show)
@flusshund

Mikee,

Sorry to hear you've joined the club. I'm guessing you mean "Tagrisso". If not, you can stop reading. 🙂

I'm 63-years-young and have been on Tagrisso for over 3 years. So far, the primary outcome has been that I've been lung cancer-free for 3 years. I have to add the qualifier because a whole-body dermatological scan found a basal cell carcinoma on my cheek that was removed last month.

The only long-term side effect I've experienced is brittle fingernails. 10mg of Biotin daily has helped. Initially, I had the usual diarrhea, plus low sugar and sodium levels. The sugar levels corrected themselves. I was taking up to 2 Imodium a day at one point, but that faded and disappeared after about 6 months. My sodium level was around the minimum normal since before I had cancer, but it got worse. Today I limit my fluid intake to no more than 50 to 60 oz (1.5 to 1.8 liters) of fluid per day, as recommended by my Nephrologist. As long as I do that, my levels are OK.

I had other symptoms that I suspect or know were not due to Tagrisso. My lung cancer metastasized to my brain, and I started Tagrisso a couple of months after having brain surgery.

Let me know if you have any more questions, and I'm wishing you the best!

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Thanks so much for the info. Very helpful.
I have only been on Tagrisso for 35 days. I found my skin has dried out a lot and I have lost weight but that has seemed to stabilize.
My problem is, I am not on insurance and have to pay for Tagrisso myself and that's going to come to an end.
I am a Vet but not sure the VA will cover the expense. I have thought abut going to open a Go Fund Me page.

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