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?

@seaspray

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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Thank you Karen! This is very helpful. We sent my husbands pathology to Foundation One as well. We just keep coming up 'unknown', ha ha. How did you find the Opdivo? Many side effects for you?

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@cindylb

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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@cindylb– Morning Cindy. I'm glad that you like this last oncologist. I love mine. I know that it's frustrating and exhausting, I really can't imagine the mixed feeling that you have with this. Can you talk with anyone about this? The more that you realize all of your feelings, except the obvious, I think it will be less tiring. Are you getting any good sleep?

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@merpreb Agree. It is so important to acknowledge ALL our feelings about what is happening to us. Feelings are just hat feelings, but kept inside they literally can make us ill. If she doesn't have a close friend in whom she can survive, maybe there is a cancer support group near her, or some sort fo couseling,or mental health professional with whom she could talk.

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@alamogal635

@merpreb Agree. It is so important to acknowledge ALL our feelings about what is happening to us. Feelings are just hat feelings, but kept inside they literally can make us ill. If she doesn't have a close friend in whom she can survive, maybe there is a cancer support group near her, or some sort fo couseling,or mental health professional with whom she could talk.

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Thank you for your kindness alamogal635…..!!
I have joined the caretaker support group on Mayo and since it's been so helpful to me with my breast cancer I know it will also help with my husband's cancer as well. There is a support group I finally found and of course, it's on a night I work (I work four days a week 10-7 at a flexible part time job so I can fit in medical and other duties as needed, but it comes at the price of not being paid when I'm not there and that pesky money thing…you know, ha ha.)
I have friends and family for support but can't afford any other assistance in that area because of my high deductible medical plan. They just now (after 18 months) offered my husband behavioral support and I think he will look into that (he is on Medicare). People like you who take time to reach out and offer support are very important and special to me and I appreciate it!
Hugs

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@cindylb

Thank you Karen! This is very helpful. We sent my husbands pathology to Foundation One as well. We just keep coming up 'unknown', ha ha. How did you find the Opdivo? Many side effects for you?

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Hi Cindy~ I found Opdivo and Tecentriq to be about the same as far as side effects. I have horrible muscular pain and some joint pain, especially when trying to sleep. Whether that is from being on immunotherapy since 2015, no one knows. I am also 65 and a retired PE teacher and personal trainer so my body has taken a lifetime beating! My skin is very sensitive but that could be from teaching in the sun forever and now living at the beach. I can deal with all of this and that is what counts!! Were you able to go on Inspire.com and find some answers?

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@seaspray

Hi Cindy~ I found Opdivo and Tecentriq to be about the same as far as side effects. I have horrible muscular pain and some joint pain, especially when trying to sleep. Whether that is from being on immunotherapy since 2015, no one knows. I am also 65 and a retired PE teacher and personal trainer so my body has taken a lifetime beating! My skin is very sensitive but that could be from teaching in the sun forever and now living at the beach. I can deal with all of this and that is what counts!! Were you able to go on Inspire.com and find some answers?

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seaspray
Thank you for the feedback on your experience, it helps. I did go to the Inspire site and will spend more time there delving into the posts and information. It certainly does have a more complete list of side effects (the site for Infinzi lists about 2 common side effects and makes it sound like a cake walk, perhaps not).
I appreciate your help!! I'll keep researching and sharing with my husband and we'll see what he decides to do.
Hugs to you!

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@cindylb

Thank you for your kindness alamogal635…..!!
I have joined the caretaker support group on Mayo and since it's been so helpful to me with my breast cancer I know it will also help with my husband's cancer as well. There is a support group I finally found and of course, it's on a night I work (I work four days a week 10-7 at a flexible part time job so I can fit in medical and other duties as needed, but it comes at the price of not being paid when I'm not there and that pesky money thing…you know, ha ha.)
I have friends and family for support but can't afford any other assistance in that area because of my high deductible medical plan. They just now (after 18 months) offered my husband behavioral support and I think he will look into that (he is on Medicare). People like you who take time to reach out and offer support are very important and special to me and I appreciate it!
Hugs

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Thank you. I like helping other if I can. Glad for your husband getting support. As for you, there are some places that take a sliding fee and moreover, some Mental health Professionals will charge whatever you pay for your insurance copay. Am retired from that work, but used to use a sliding scale, or ask for the copay. I preferred my clients to pay out of pocket as then their diagnosis (insurance required this) was not in any records and there was much more privacy that way. Anyway, I amn glad you find help here and wish you
and your husband the best.

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I guess I haven't updated for a while. I have the Large Cell Neuroendocrine Lung Cancer. Had my last Chemo in April, Carbo/Etroposide. PET was stable. Two more treatments were cancelled as my blood work was staying too low. My Onc at Stanford wanted another PET in June and a repeat brain MRI. My local Onc was not going to do one. I had been receiving no treatment. PET showed progression. Brain MRI now shows several spots and whole brain radiation is recommended. I had been started on Abraxane and Keytruda, had one infusion. I am to start the WBR next week then resume the Infusions. Doctor said it woukd be too hard on me to do all at once. There is no treatment protocol for this cancer. Has anyone had WBR and treatments stopped until you were done with radiation? What side effects did you have?

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@merpreb

@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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@merpreb Thanks, Merry! No inhalers at this point. And, I knew from my PA at Mayo that from the lung cancer perspective that not returning to smoking was the biggie and for exercise to focus on the cardio stuff, for the lungs. So, that makes sense that COPD would run the same tracks. Guess we can't change the past so need to "stay on the straight and narrow" going forward, huh? Lol.

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Hi Cindy! Hope your husband is feeling better. I have stage 4 lung cancer and as of right now, I don't have to do any chemo. We are just doing Keytruda (immune therapy). I had a CT scan done last Friday and the spots on my liver is gone and the spots on my lymph nodes are gone as well. The tumors on my lungs are shrinking as well. The immune therapy is working very well for me and I have absolutely no side effects. It takes about 30 minutes every 3 weeks. I had a molecular test done when I was first diagnosed and that is when they decided that no chemo and just immune therapy. I am happy to answer any questions if you have any. Blessings to you and your husband.

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@merpreb

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

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Does anyone know if Medicare/aarp united healthcare pays for 3rd opinions? I’m getting conflicting advice between my local oncologist and my MD Anderson 2nd opinion oncologist. Both have been in agreement to this point in my treatments.

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@2onlow8

Does anyone know if Medicare/aarp united healthcare pays for 3rd opinions? I’m getting conflicting advice between my local oncologist and my MD Anderson 2nd opinion oncologist. Both have been in agreement to this point in my treatments.

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@2onlow8– Good morning. Oh boy, just what you don't need! Have they spoken with each other about what they are disagreeing about? May I ask what the difference between the two are?

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@2onlow8

Does anyone know if Medicare/aarp united healthcare pays for 3rd opinions? I’m getting conflicting advice between my local oncologist and my MD Anderson 2nd opinion oncologist. Both have been in agreement to this point in my treatments.

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@2onlow8– Good morning. Boy, that's a tough one. I think that it might vary with everyone. Have you called them?

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@schmeeckle64

Hi Cindy! Hope your husband is feeling better. I have stage 4 lung cancer and as of right now, I don't have to do any chemo. We are just doing Keytruda (immune therapy). I had a CT scan done last Friday and the spots on my liver is gone and the spots on my lymph nodes are gone as well. The tumors on my lungs are shrinking as well. The immune therapy is working very well for me and I have absolutely no side effects. It takes about 30 minutes every 3 weeks. I had a molecular test done when I was first diagnosed and that is when they decided that no chemo and just immune therapy. I am happy to answer any questions if you have any. Blessings to you and your husband.

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schmeeckle64, Thank you for your reply and I'm glad to hear you're seeing progress with your treatments! It's also encouraging to hear that you are not having any significant side effects from Keytruda. I believe the immunotherapies are much more forgiving than chemo, radiation and perhaps targeted therapies. The doctors say that my husband must do at least a small amount of chemo before he can have the immunotherapy (and also radiation) due to FDA rules. That may be the end of that because my husband does not want chemo at all. I'm not sure if the chemo and radiation are really an integral part of the 'cure' or effectiveness or if they just want consistency with their new drug trials. So many people enter immunotherapy or other treatments so beat up from chemo they can't distinguish the side effects of the chemo vs. the other treatments. That's where you have been so helpful to me….although it's a different drug than what my husband might use, immunotherapy sounds easier to tolerate and your sharing has helped me a great deal. Thank you so very much for taking time!!
Hugs

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@margot69

I guess I haven't updated for a while. I have the Large Cell Neuroendocrine Lung Cancer. Had my last Chemo in April, Carbo/Etroposide. PET was stable. Two more treatments were cancelled as my blood work was staying too low. My Onc at Stanford wanted another PET in June and a repeat brain MRI. My local Onc was not going to do one. I had been receiving no treatment. PET showed progression. Brain MRI now shows several spots and whole brain radiation is recommended. I had been started on Abraxane and Keytruda, had one infusion. I am to start the WBR next week then resume the Infusions. Doctor said it woukd be too hard on me to do all at once. There is no treatment protocol for this cancer. Has anyone had WBR and treatments stopped until you were done with radiation? What side effects did you have?

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Hi @margot69, so good to hear from you again. I was wondering about you. @karen43 and @lady1lake have experience with whole brain radiation therapy (WBR) for metastasized lung cancer. (https://connect.mayoclinic.org/discussion/small-cell-lung-cancer-1/?pg=6#comment-263340)

Did your oncologist talk to you about dental care before starting WBR?

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