Lung Cancer Support Group: Looking for support from others

Posted by Juliette @marshall8318, Jan 5, 2022

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 Support Group.

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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@ta52

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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Tom- That's a lot of research! SOmetimes Latin words hold precious gems of fine-tuning a word!

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@marshall8318

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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I recently found out that I have another cancerous lesion. I will definitely check it out after I get everything settled with treatments. Thank you for sharing your information.

Did you find it as easy to open up there as it is here, on Connect?

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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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Terri Wahls has written a lot about the microbiome, even though her issue is MS. She also has a good cookbook. I found both in the library. If you follow her on FB, there are plenty of free podcasts.

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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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Wow! What can I do, if anything, about thinning hair? I know you will say it is the least of my worries, and you are right! I just have had no one address this problem. Is it only mine? I know about wigs and wiglettes, but is there a product that may restore hair to even near normal health?

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@bevthaldorf

Wow! What can I do, if anything, about thinning hair? I know you will say it is the least of my worries, and you are right! I just have had no one address this problem. Is it only mine? I know about wigs and wiglettes, but is there a product that may restore hair to even near normal health?

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Julliet- I'm afraid that you aren't going to like my answer. I'm afraid that this is one of the side effects of cancer treatments. You are far from alone on this. I do not know if there is a product to stop this. Nor do I know if it would be compatible with chemo or immunology.

A good friend of mine, when she was undergoing chemo for breast cancer, had another artist friend paint her head.

There are scarves, and caps with hair attached. You can cut your hair to a different length, color it something wild, and become a different person with a different look altogether.

And some women go all out:
https://www.self.com/story/lip-sync-chemotherapy
http://politicsandfashionblog.com/2020/10/14/i-refused-to-wear-a-wig-during-chemo-heres-why/

For women hair loss seems to tie in with our femininity. And I can understand this as I love long hair. My hair only thinned during chemo. But you can use any hair loss to make statements, show your pride in survivorship, make a political statement...any number of things.

If you joined a cancer support group maybe start things for your own rally!

This might not be your cup of tea but I found that being with people who are in your circumstance does a world of good, especially when you give people your knowledge.

So what do you think?

Merry

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It's so good to hear from someone about this concern. I hate to even bring it up, because my medicine has been so successful during my Stage 4 Lung Cancer. I've been feeling so well and am able to live normally, But I have this problem. If I felt sick, I would not worry about such a trivial thing. I have lost hair texture but have been blessed with thick, short hair. I have lost hair in my bangs, which I am told is normal. I've really lost hair strand by strand, not in globs. I have headbands and turbans ready. I'm just interested in what others are doing. I have had so much care and support and encouragement. I wish others the same.

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@bevthaldorf

It's so good to hear from someone about this concern. I hate to even bring it up, because my medicine has been so successful during my Stage 4 Lung Cancer. I've been feeling so well and am able to live normally, But I have this problem. If I felt sick, I would not worry about such a trivial thing. I have lost hair texture but have been blessed with thick, short hair. I have lost hair in my bangs, which I am told is normal. I've really lost hair strand by strand, not in globs. I have headbands and turbans ready. I'm just interested in what others are doing. I have had so much care and support and encouragement. I wish others the same.

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Hi! I started losing my hair about the 4th week og my chemo. My hair was thin to begin with and I've lost a fair amount but still not bald. I too have head gear ready to go. It's a weird in-between time. I am hoping mine grows back in different. My friend's hair was stick straight and grew back in kinda wavy/curly. Really cute. I have read some posts that say that we'll lose more after our 2nd treatment.

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@zadah7

Hi! I started losing my hair about the 4th week og my chemo. My hair was thin to begin with and I've lost a fair amount but still not bald. I too have head gear ready to go. It's a weird in-between time. I am hoping mine grows back in different. My friend's hair was stick straight and grew back in kinda wavy/curly. Really cute. I have read some posts that say that we'll lose more after our 2nd treatment.

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Good morning @zadah7. Unfortunately, you are correct. Usually the more chemo, the more there is hair loss. I'm glad that you have prepared for the eventuality. But remember that everyone is different, just like when hair regrows. You never know what you will see.

But it's exciting too. Just think, what color would you like to see? Red hair?

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