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?

@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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@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

Liked by cindylb

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@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.

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Thank you!

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@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

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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.

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@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.

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

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@merpreb

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

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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.

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@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.

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

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@merpreb

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

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Yes. We got a second opinion a while back and additional tests but they came up with the same situation. They honestly don't know what to do………We got our second from Colorado University (CU) Medical Center and they sent off his biopsies to Mayo and Cleveland for help, but nope………..no one knows what to do. It's exhausting and frustrating. We're on our 3rd oncologist as well and we like this one.
Thanks for your help.

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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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Hi @merpreb and @cindylb,

I was just reading the posts about your husband's unknown cancer, Cindy. I can only imagine how frustrating that must be to know that it is there but not to know what type it is. In Merry's post, she mentioned immunotherapy. There is a member of Connect,(@shortshot80) Nancy, who has been using immunotherapy for quite a while for lung cancer and it has worked well for her. I'm not sure if she will respond to this discussion as she has been dealing with some other health problems lately. I've known of others who have used it for metastasized breast cancer with good results as well.

Keep us posted, Cindy, on your husband's treatment.

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@hopeful33250

Hi @merpreb and @cindylb,

I was just reading the posts about your husband's unknown cancer, Cindy. I can only imagine how frustrating that must be to know that it is there but not to know what type it is. In Merry's post, she mentioned immunotherapy. There is a member of Connect,(@shortshot80) Nancy, who has been using immunotherapy for quite a while for lung cancer and it has worked well for her. I'm not sure if she will respond to this discussion as she has been dealing with some other health problems lately. I've known of others who have used it for metastasized breast cancer with good results as well.

Keep us posted, Cindy, on your husband's treatment.

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Thank you!

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Hi Cindy,
Try going on Inspire.com to the lung cancer survivors. You can type in Infinzi or Durvalumab in the top right hand corner and it will open up all the discussions on that drug. I was on Opdivo for 3 1/2 years and now on another immunotherapy called Tecentriq. Mayo sent my tissue samples to Foundation One. There are people on Inspire with unknown primaries. Hope this helps…let me know if you need help on the forum.
Karen

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