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.

@merpreb

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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Hi merpreb,
I think I'm prepared for just about anything in this arena. Color, well, I was 95% gray so it's hard to expect that it could be anything else. However, I would love it if it was a beautiful, dark auburn! Thanks for responding. God speed.

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@zadah7

Hi merpreb,
I think I'm prepared for just about anything in this arena. Color, well, I was 95% gray so it's hard to expect that it could be anything else. However, I would love it if it was a beautiful, dark auburn! Thanks for responding. God speed.

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@zadah7- Wouldn't we all?!!

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I was thinking the same thing. Perhaps we need to find out how to go about starting one??

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@cindyjk

I was thinking the same thing. Perhaps we need to find out how to go about starting one??

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This was a comment meant as a response
to the person asking if they had missed a lung cancer support group in the listing of meetings.

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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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I dont think hair loss/thinning is a small worry- —just about every female i have talked with shares the concern! I was diagnosed about 8 weeks ago and am set to start chemo in a couple of weeks ( after a histoplasmosis infection is cleared). Im terrified of losing my hair!
I realize it may happen and have two wigs at the ready but i pray to avoid it.
Have you heard of cold capping?
Im looking into it but from what i understand you have to start it with first treatment or it doesnt work.
I pray we both get thru treatment with our hair intact!
Amy

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@aksinspringfield

I dont think hair loss/thinning is a small worry- —just about every female i have talked with shares the concern! I was diagnosed about 8 weeks ago and am set to start chemo in a couple of weeks ( after a histoplasmosis infection is cleared). Im terrified of losing my hair!
I realize it may happen and have two wigs at the ready but i pray to avoid it.
Have you heard of cold capping?
Im looking into it but from what i understand you have to start it with first treatment or it doesnt work.
I pray we both get thru treatment with our hair intact!
Amy

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Good morning @aksinspringfield. I was wondering when someone would bring this up. Cold capping is a personal decision but you should discuss it with your oncologist. It is rarely covered by insurance and there are many out there and prices vary. Be very wary of being ripped off. I can't direct you with this one as I know nothing about them.

Cold capping cools your scalp to a very low temperature (-22 degrees Fahrenheit), which constricts blood vessels beneath the skin of the scalp. This reduces the number of chemotherapy drugs that reach and are absorbed by the hair follicles. As a result, hair may be less likely to fall out.

Are you getting more anxious to begin your treatment?

Some side effects that people may experience when using cold caps include:
headaches.
nausea.
dizziness.
neck and shoulder discomfort.
scalp pain.
forehead pain

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@merpreb

Good morning @aksinspringfield. I was wondering when someone would bring this up. Cold capping is a personal decision but you should discuss it with your oncologist. It is rarely covered by insurance and there are many out there and prices vary. Be very wary of being ripped off. I can't direct you with this one as I know nothing about them.

Cold capping cools your scalp to a very low temperature (-22 degrees Fahrenheit), which constricts blood vessels beneath the skin of the scalp. This reduces the number of chemotherapy drugs that reach and are absorbed by the hair follicles. As a result, hair may be less likely to fall out.

Are you getting more anxious to begin your treatment?

Some side effects that people may experience when using cold caps include:
headaches.
nausea.
dizziness.
neck and shoulder discomfort.
scalp pain.
forehead pain

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I am ready to begin treatments, yes… but lots of questions for oncologist at second opinion

I am researching the cold capping- seems larger facilities offer or at least can coordinate it- my local does not so i would have to rent and have someone with me to assist

Im willing to spend the money if at least a decent shot of success… but still have more research to do

This must be relatively new if not discussed here yet (?). My hair stylist mentioned it to me

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@aksinspringfield

I dont think hair loss/thinning is a small worry- —just about every female i have talked with shares the concern! I was diagnosed about 8 weeks ago and am set to start chemo in a couple of weeks ( after a histoplasmosis infection is cleared). Im terrified of losing my hair!
I realize it may happen and have two wigs at the ready but i pray to avoid it.
Have you heard of cold capping?
Im looking into it but from what i understand you have to start it with first treatment or it doesnt work.
I pray we both get thru treatment with our hair intact!
Amy

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Amy, thank you for contacting me. I do not know about cold capping. My hair dresser did say there might be a solution one could try, but she did not know if it worked on cancer patients. So far my hair loss is mostly in the front,where, I guess, it starts. The texture of my hair has surely changed. I can try different remedies for this. One is Dream Cream. I have head coverings ready. I have looked at wiglets, but I don't know quite how they are attached. I am just happy to be able to enjoy life at this time. Please do the same..so happy we made contact! Bev

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@aksinspringfield

I dont think hair loss/thinning is a small worry- —just about every female i have talked with shares the concern! I was diagnosed about 8 weeks ago and am set to start chemo in a couple of weeks ( after a histoplasmosis infection is cleared). Im terrified of losing my hair!
I realize it may happen and have two wigs at the ready but i pray to avoid it.
Have you heard of cold capping?
Im looking into it but from what i understand you have to start it with first treatment or it doesnt work.
I pray we both get thru treatment with our hair intact!
Amy

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Hi Amy,

I did the Paxman cool scalp at the Mayo Clinic in Jacksonville. My chemo regimen was Cisplatin & Alimta 4 times/ 3 weeks apart. I had shedding but kept about 90% of my hair.

Paxman is a great company to work with. You need to check with your chemo facility on what cooling systems they have, then contact that company to order your cap. With Paxman, I printed off an application form and made an appointment with my oncologist to be fitted for my cap. Then you pay them over the phone and they send you the cap in a few days. Mine was not covered by insurance so I paid out of pocket.

Other good companies for cold capping are Dignicap & Penguin Cold Caps. Most of the cold capping is marketed toward breast cancer patients but don’t get discouraged, they would for lung cancer patients as well.

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@ginabilleter

Hi Amy,

I did the Paxman cool scalp at the Mayo Clinic in Jacksonville. My chemo regimen was Cisplatin & Alimta 4 times/ 3 weeks apart. I had shedding but kept about 90% of my hair.

Paxman is a great company to work with. You need to check with your chemo facility on what cooling systems they have, then contact that company to order your cap. With Paxman, I printed off an application form and made an appointment with my oncologist to be fitted for my cap. Then you pay them over the phone and they send you the cap in a few days. Mine was not covered by insurance so I paid out of pocket.

Other good companies for cold capping are Dignicap & Penguin Cold Caps. Most of the cold capping is marketed toward breast cancer patients but don’t get discouraged, they would for lung cancer patients as well.

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@ginabilleter- Thank you for sharing your information. Hopefully this ill help those of us who do not want to lose our hair!

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