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.

Merry, Alumni Mentor | @merpreb | Jul 17, 2019
In reply to @cindylb "My husband has had NO treatment at all (except medical marijuana). Since they didn't know the..." + (show)
@cindylb

My husband has had NO treatment at all (except medical marijuana). Since they didn't know the cancer type they couldn't do anything. If he moved forward with the immunotherapy that will be his first treatment. His tests consist of PET scans every 3 months and blood tumor marker tests. It's been a odd road for sure.

Jump to this post

@cindyb -Cindy have you considered a second or third opinion?

REPLY
2 replies
cindylb | @cindylb | Jul 17, 2019
In reply to @merpreb "@cindylb- Cindy is he still on chemo or immunotherapy? What tests have they done lately?" + (show)
@merpreb

@cindylb- Cindy is he still on chemo or immunotherapy? What tests have they done lately?

Jump to this post

My husband has had NO treatment at all (except medical marijuana). Since they didn't know the cancer type they couldn't do anything. If he moved forward with the immunotherapy that will be his first treatment. His tests consist of PET scans every 3 months and blood tumor marker tests. It's been a odd road for sure.

REPLY
1 reply
Merry, Alumni Mentor | @merpreb | Jul 17, 2019
In reply to @cindylb "Thank you! My husband is very fatigued, losing weight and his tumor marker blood tests are..." + (show)
@cindylb

Thank you!
My husband is very fatigued, losing weight and his tumor marker blood tests are way up. Oddly, the tumor hasn't grown at all and is in fact smaller than when he was diagnosed. The lymph node is pesky however.

Jump to this post

@cindylb- Cindy is he still on chemo or immunotherapy? What tests have they done lately?

REPLY
1 reply
cindylb | @cindylb | Jul 17, 2019
In reply to @merpreb "@cindylb- I know Cindy. It's a long haul of ups and downs and sideways. How isn't..." + (show)
@merpreb

@cindylb- I know Cindy. It's a long haul of ups and downs and sideways. How isn't your husband doing well? Is he in pain?
I think that going to a bladder site is a good idea.
here's another one that I found: https://www.nejm.org/doi/full/10.1056/NEJMoa1809697

Jump to this post

Thank you!
My husband is very fatigued, losing weight and his tumor marker blood tests are way up. Oddly, the tumor hasn't grown at all and is in fact smaller than when he was diagnosed. The lymph node is pesky however.

REPLY
1 reply
cindylb | @cindylb | Jul 17, 2019
In reply to @colleenyoung "@cindylb, members are talking about IMFINZI® (durvalumab) in this discussion: - A cold and Imfinzi immunotherapy..." + (show)
@colleenyoung

@cindylb, members are talking about IMFINZI® (durvalumab) in this discussion:
- A cold and Imfinzi immunotherapy https://connect.mayoclinic.org/discussion/a-cold-and-infinnzi/

You may wish to post your question there and I'll bring in other members too.

Jump to this post

Thank you!

REPLY
Merry, Alumni Mentor | @merpreb | Jul 17, 2019

@cindylb- I know Cindy. It's a long haul of ups and downs and sideways. How isn't your husband doing well? Is he in pain?
I think that going to a bladder site is a good idea.
here's another one that I found: https://www.nejm.org/doi/full/10.1056/NEJMoa1809697

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 17, 2019
In reply to @cindylb "Good morning, Does anyone here have any experience with the immunotherapy drug, Infinzi (Durvalumab)? It's been..." + (show)
@cindylb

Good morning,

Does anyone here have any experience with the immunotherapy drug, Infinzi (Durvalumab)? It's been used in other types of cancer and about a year ago (I believe) was approved for lung cancer treatment. They are suggesting this drug for my husband who has been struggling for 18 months with a 'cancer of unknown primary' that presents only in his lung and lymph node (that really isn't the node where lung cancer spreads). It's been a mess of a gray area all this time but now the doctors feel they should proceed with lung cancer as the diagnosis.
The only information I can really find on this drug is from the drug manufacturer and of course that's going to be biased toward the positive....anyone used this or know of it and it's effects?
Thanks and Hugs to all!

Jump to this post

@cindylb, members are talking about IMFINZI® (durvalumab) in this discussion:
- A cold and Imfinzi immunotherapy https://connect.mayoclinic.org/discussion/a-cold-and-infinnzi/

You may wish to post your question there and I'll bring in other members too.

REPLY
1 reply
cindylb | @cindylb | Jul 17, 2019
In reply to @merpreb "@cindylb- Good morning. Hi Cindy! How are you doing? This is what I found for you...." + (show)
@merpreb

@cindylb- Good morning. Hi Cindy! How are you doing? This is what I found for you. I do not have any experience with immunotherapy so I can't help with that but I did find this: It's mostly used for bladder cancers but has recently been shown to help with lung cancer
http://chemocare.com/chemotherapy/drug-info/durvalumab.aspx
https://www.rxlist.com/imfinzi-side-effects-drug-center.htm
https://www.cancer.org/cancer/non-small-cell-lung-cancer/treating/immunotherapy.html
How is your dad doing?

Jump to this post

Thanks Merry. I'm a little 'google doctor on tv' (ha ha) and found these resources but thank you so much for your reply and sending these over. Trying to find someone out there who might have used this. Since it was originally used for bladder cancer I may go trolling over in bladder cancer for info. My husband isn't doing as well again. We're at least a year into this more than they thought he'd live but we're still working on trying to figure out what his cancer is and how to treat it. It's hard to want to do any treatment that might have serious side effects when we have no idea if it's even targeting the proper cancer, sigh.
Hugs

REPLY
Merry, Alumni Mentor | @merpreb | Jul 17, 2019
In reply to @cindylb "Good morning, Does anyone here have any experience with the immunotherapy drug, Infinzi (Durvalumab)? It's been..." + (show)
@cindylb

Good morning,

Does anyone here have any experience with the immunotherapy drug, Infinzi (Durvalumab)? It's been used in other types of cancer and about a year ago (I believe) was approved for lung cancer treatment. They are suggesting this drug for my husband who has been struggling for 18 months with a 'cancer of unknown primary' that presents only in his lung and lymph node (that really isn't the node where lung cancer spreads). It's been a mess of a gray area all this time but now the doctors feel they should proceed with lung cancer as the diagnosis.
The only information I can really find on this drug is from the drug manufacturer and of course that's going to be biased toward the positive....anyone used this or know of it and it's effects?
Thanks and Hugs to all!

Jump to this post

@cindylb- Good morning. Hi Cindy! How are you doing? This is what I found for you. I do not have any experience with immunotherapy so I can't help with that but I did find this: It's mostly used for bladder cancers but has recently been shown to help with lung cancer
http://chemocare.com/chemotherapy/drug-info/durvalumab.aspx
https://www.rxlist.com/imfinzi-side-effects-drug-center.htm
https://www.cancer.org/cancer/non-small-cell-lung-cancer/treating/immunotherapy.html
How is your dad doing?

REPLY
2 replies
cindylb | @cindylb | Jul 17, 2019

Good morning,

Does anyone here have any experience with the immunotherapy drug, Infinzi (Durvalumab)? It's been used in other types of cancer and about a year ago (I believe) was approved for lung cancer treatment. They are suggesting this drug for my husband who has been struggling for 18 months with a 'cancer of unknown primary' that presents only in his lung and lymph node (that really isn't the node where lung cancer spreads). It's been a mess of a gray area all this time but now the doctors feel they should proceed with lung cancer as the diagnosis.
The only information I can really find on this drug is from the drug manufacturer and of course that's going to be biased toward the positive....anyone used this or know of it and it's effects?
Thanks and Hugs to all!

REPLY
2 replies
View MoreView Less
Please sign in or register to post a reply.