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.

@hopeful33250

Hello All:

As you are all lung cancer survivors, I thought you would find this article interesting about how Katherine and her participation in clinical trials.

https://intheloop.mayoclinic.org/2019/07/09/clinical-trials-key-to-lung-cancer-patients-survival/?

If you have been involved in a clinical trial, would you please share your story as well?

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@hopeful33250- Thank you so much for sharing this.

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@merpreb

@bluelagoon - hi! How are you? Are you well?

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I'm hanging in there! Won't know my results till Late August, early Sept!

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@merpreb

@bluelagoon - hi! How are you? Are you well?

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@merpreb Merry- thanks for asking! Time flies- I'm almost ready to hit Mayo for my next quarterly check. And, knock wood, feel better than ever. (I recently noticed that in a yoga class just doing a basic child's pose how my lungs & I feel less "claustrophobic".) On the flip side, I can certainly relate to the fears that come up here with COPD and such after recently seeing how Leonard Nimoy's wife has reached out to get people to wake up to how it so significantly affected him. Knowing that it's there taking a nap in me is just fine on some days and then when someone mentions it I wonder how I got blessed with both it and the cancer!

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@wally1940

I'm hanging in there! Won't know my results till Late August, early Sept!

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@wally1940- Good morning. Haven't heard from you in a while. What tests have you had and what kind of cancer do you have?

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@bluelagoon

@merpreb Merry- thanks for asking! Time flies- I'm almost ready to hit Mayo for my next quarterly check. And, knock wood, feel better than ever. (I recently noticed that in a yoga class just doing a basic child's pose how my lungs & I feel less "claustrophobic".) On the flip side, I can certainly relate to the fears that come up here with COPD and such after recently seeing how Leonard Nimoy's wife has reached out to get people to wake up to how it so significantly affected him. Knowing that it's there taking a nap in me is just fine on some days and then when someone mentions it I wonder how I got blessed with both it and the cancer!

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@bluelagoon- Hi! We've missed hearing from you. I agree that COPD is a formidable foe. Just keep doing what you are doing to stay healthy. I recently spoke with my oncologist and she said that not-smoking is the biggest no-no for COPD and unless there is a big change that needs a follow-up that we should concentrate on how to remain as healthy as we can and not worry about it. I know, easier said than done. I'm with you on the cancer and COPD, We can only do our best. Are you doing any inhalers?

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@hopeful33250

Hello All:

As you are all lung cancer survivors, I thought you would find this article interesting about how Katherine and her participation in clinical trials.

https://intheloop.mayoclinic.org/2019/07/09/clinical-trials-key-to-lung-cancer-patients-survival/?

If you have been involved in a clinical trial, would you please share your story as well?

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Done! Thank you for doing this Teresa!

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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!

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@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!

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@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?

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@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?

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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

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@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!

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@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.

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