Lung Cancer Support Group

Posted by Juliette @marshall8318, Jan 5 8:58am

I’ve noticed in events several support groups but not seeing a lung cancer support group. Am I missing it?

Interested in more discussions like this? Go to the Lung Cancer group.

Juliette @marshall8318, not all conditions have monthly hosted support groups. But the Lung Cancer group here is open 24/7. 🙂 I'm tagging @muradangie from the Mayo Cancer Education Center for more info about support groups.

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@colleenyoung

Juliette @marshall8318, not all conditions have monthly hosted support groups. But the Lung Cancer group here is open 24/7. 🙂 I'm tagging @muradangie from the Mayo Cancer Education Center for more info about support groups.

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Hi Juliette, @marshall8318
The Cancer Education Center has a lot of resources for patients. You can find our resources at this link: https://connect.mayoclinic.org/blog/cancer-education-center/tab/classes-resources/

You can also find a lot cancer-related topics listed under the "More" tab. We host weekly webinars or watch recorded webinars in our video library. I hope this is helpful. Let me know if you have any questions. Thanks for tagging me Colleen! @colleenyoung

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Julliet- Hello again- Good morning. It's been a while since we have spoken. How are you doing? I would love to see more lung cancer videos and blogs, even if we have a huge lung cancer membership. Are there subjects that you would like addressed?

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@merpreb

Julliet- Hello again- Good morning. It's been a while since we have spoken. How are you doing? I would love to see more lung cancer videos and blogs, even if we have a huge lung cancer membership. Are there subjects that you would like addressed?

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May I interject? I would like to see information re: abating appetite loss and nausea during and after treatment. I’ve read lots on adding probiotics, glutamine and even fish oil. It would be nice to have affirmation. It would also be nice to be given beneficial options or suggestions other than ‘take your anti nausea meds’. IMP yes they can help, but they do nothing to SOLVE the problem. They are ‘band aids’. Sorry to sound frustrated, but I am! There is so much information out there and there has to be better options/solutions~. Cheers.

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@merpreb

Julliet- Hello again- Good morning. It's been a while since we have spoken. How are you doing? I would love to see more lung cancer videos and blogs, even if we have a huge lung cancer membership. Are there subjects that you would like addressed?

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I join a once a month Zoom lung cancer support group through John Stoddard in Des Moines hosted by a Clinical Oncology Social Worker. Being able to talk to others about their updates, issues, etc. has helped me so much. We are able to help each other and support each other. The social worker arranges for guests if we have special concerns. She had a dietitian one month who answered a lot of our questions. I’m not much of a text, email, social media person so talking on Zoom has been a huge support to me. When I saw there were groups for other cancers through Mayo I wanted to make sure I wasn’t missing out on one for lung cancer.

Similar to @carlies I am very interested in help with diet, probiotics, and especially the latest research on the micro biome and cancer. During treatment I know you had to be very careful what to take not to interfere with chemo and radiation so for @carlies it may be different than what I need to do now after those treatments.

Merry, I’ve been hanging in there. Been suffering from repeated infections so have been on 4 rounds of antibiotics and ended in the ER with an allergic reaction to one. Went to an integrated MD and he is helping me with getting my immune system up and improve my gut health from chemo and all the antibiotics. Just had scans January 4th. They were a huge stress relief as previous scans had shown 5 new micro nodules but this scan they were gone. I do have another hydropneumothorax but overall the scans were great news. Thanks for asking.

I haven’t kept up with posts lately. How are you doing?

Juliette

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Juliette, it’s so nice to hear about positive progress. Thank you! It sounds like you’re in IA, but I’d like to ask: how did you find your integrative MD? I haven’t been able to find appropriate sounding ones in Mpls? Is it possible your MD could refer someone who works near me?? Pls feel free to PM me. Best~, Carlies.

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@carlies

May I interject? I would like to see information re: abating appetite loss and nausea during and after treatment. I’ve read lots on adding probiotics, glutamine and even fish oil. It would be nice to have affirmation. It would also be nice to be given beneficial options or suggestions other than ‘take your anti nausea meds’. IMP yes they can help, but they do nothing to SOLVE the problem. They are ‘band aids’. Sorry to sound frustrated, but I am! There is so much information out there and there has to be better options/solutions~. Cheers.

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Hello again- I can't blame you for sounding frustrated. And your question is certainly a valid one to ask- BUT it all depends on the stage of your cancer, if it has metastasized, your treatments, your other problems and your diet, and the fact that science does not answer all questions. We are very lucky to at least have these, and I know that you know it. They only treat this awful feeling.

There are many different things that you can do to help it be milder:
https://www.healthline.com/nutrition/nausea-remedies#2.-Peppermint-Aromatherapy
Have you tried all of these? I think that it will be something that you have to manage yourself, but if you do find a solution, please let us know!

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@marshall8318

I join a once a month Zoom lung cancer support group through John Stoddard in Des Moines hosted by a Clinical Oncology Social Worker. Being able to talk to others about their updates, issues, etc. has helped me so much. We are able to help each other and support each other. The social worker arranges for guests if we have special concerns. She had a dietitian one month who answered a lot of our questions. I’m not much of a text, email, social media person so talking on Zoom has been a huge support to me. When I saw there were groups for other cancers through Mayo I wanted to make sure I wasn’t missing out on one for lung cancer.

Similar to @carlies I am very interested in help with diet, probiotics, and especially the latest research on the micro biome and cancer. During treatment I know you had to be very careful what to take not to interfere with chemo and radiation so for @carlies it may be different than what I need to do now after those treatments.

Merry, I’ve been hanging in there. Been suffering from repeated infections so have been on 4 rounds of antibiotics and ended in the ER with an allergic reaction to one. Went to an integrated MD and he is helping me with getting my immune system up and improve my gut health from chemo and all the antibiotics. Just had scans January 4th. They were a huge stress relief as previous scans had shown 5 new micro nodules but this scan they were gone. I do have another hydropneumothorax but overall the scans were great news. Thanks for asking.

I haven’t kept up with posts lately. How are you doing?

Juliette

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I just got a CT result and have to wait to speak with my team before I understand some of the confusing wording. I'll let you know.

I'm going to check out John Stoddard. How did you select this one?

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@merpreb

I just got a CT result and have to wait to speak with my team before I understand some of the confusing wording. I'll let you know.

I'm going to check out John Stoddard. How did you select this one?

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Sometimes I wonder if it is a good or bad that we get to read those reports. Good thing the oncologist interprets them for us.

I can’t remember how I came across the John Stoddard support group but I wanted to do one that was Zoom and they didn’t care I wasn’t a patient. I had read support groups improve survival so figured I better do it 😊

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@marshall8318

Sometimes I wonder if it is a good or bad that we get to read those reports. Good thing the oncologist interprets them for us.

I can’t remember how I came across the John Stoddard support group but I wanted to do one that was Zoom and they didn’t care I wasn’t a patient. I had read support groups improve survival so figured I better do it 😊

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Yesterday I said, "oh, I can't unknow this!" But I sure used to feel the opposite years ago when we weren't allowed to know a lot. You might be too young to have experienced this. Our medical files were private, not for our eyes.

I think that it is a good thing that radiologists give very detailed reports so that doctors can tell us about our health. With the good can come details we didn't really want to hear. I hear you! I think that it's power, so I know what I have to deal with.

Thank you for your recommendation to John Stoddard. I will definitely check it out. Are you comfortable in this group?

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I hope you do not have to wait long to see the doctor and get all your questions answered.

I’m very comfortable with the group at John Stoddard. It is a small group which is perfect for Zoom so everyone can talk. It stays positive and supportive.

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@merpreb

I just got a CT result and have to wait to speak with my team before I understand some of the confusing wording. I'll let you know.

I'm going to check out John Stoddard. How did you select this one?

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I spend a lot of time on Google searching for the Latin terms in radiology reports and often times I'm redirected to Mayo or Memorial Sloan Kettering, Moffitt, MD Anderson for a definition. I like to be informed before I have those conversations with my care team.

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