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?

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

@merpreb

@margot- I thought that all chemo caused hair loss so my friend came to my house to give me a buzz cut. But just before she plugged in the "buzzer" she asked me if I was sure that I would lose my hair. She had me call the infusion nurse and I learned that the chemo that I would get would not necessarily cause hair loss. Margot- I was seconds away from losing my very long, thick hair! I only experienced hair thinning, not that anyone would have noticed because of all my hair.
Before each chemo session I put make-up on and dressed nicely, even if I had jeans on! It was a small thing, I know, but it made me feel human for a bit!

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That was close! Nope, my hair is definitely coming out. Yes, put make up on everything Rey day.

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@merpreb

Margot-I really wish that you would move closer to Stanford. I know, I know you don't want to. If you aren't happy with your "team" then your attitude will be negative and this will effect your treatments and possibly your outcome. Attitude really does make a difference. It seems as if your need for better medical attention might outweigh that of your husband's right now. He could always get another dr, if for only for the time that you need to be there. You could stay at a Ronald McDonald house or even rent a small apt. Please think about this.

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Merry, that would cost a fortune here and I am not physically up to it. I think I need to call so done this morning or go to ER. My whole chest is hurting. No temp. Need to get dressed. And, more hair falling out.

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I am an 84 year old guy. In early September 2016 I was diagnosed with inoperable lung cancer. The cancer was 25 millimetres with a very thin tethering to the inner lung lining. In December I had another CT scan,and the cancer had grown to 30 mm approx and the tethering had increased to 27x26mm.I can only imagine it was growing steadily by September 2017 when a friend suggested I try CBD oil as it might help me. This I did. I initially used about 3 drops under the tongue 3 times a day for about 10 days and then decided to use an eye dropper full ( 9 drops ) twice a day for another 10 days I left it under my tongue for 2 minutes before swallowing it.I then stopped taking it because I did not know if it was doing me any good and I also disliked the taste.I managed to have another scan in November 2017 and the result was amazing. The cancer had had near total resolution with only a small piece of soft tissue remaining 16x9mm. The mediastinal nodes which had been growing in size and number were now sub centimetre.The last scan I have had was in July 2018 and the only thing mentioned on the report was a left hilar node size 12mm. The CBD oil was 2% strength and made by a labs in Spain and cost £20 for a 10ml vial and I bought it from a local health food shop . I live in Staffordshire England and only THC is illegal here. By the way I had refused chemo/radiotherapy because I preferred quality of life to nasty side effects.

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@gazza- Good morning and welcome to Mayo Connect. I'm glad that you found us. What a great story you have! Other than CBD oil are you taking? Do you use inhalers? What kind of inoperable lung cancer do you have? Life is a mystery, isn't it. Somethings, that are "not suppose to" happen do just that. But there is very little known about the effects of CBD oil and it's benefits for a lot of things. I'm not suggesting that CBD oil did not have an effect on your cancer. Anything can happen and it's certainly is wonderful that your cancer is literally only hanging on by a thread.
You are a very brave man to have turned away suggested treatments, but as you say, and I do agree, the quality of life certainly is of upmost importance.
"There have been recent news stories about the potential promise of CBD and/or THC oil and fighting lung cancer, such as these news stories:
https://abcnews.go.com/Health/Healthday/story?id=4506595&page=1
https://metro.co.uk/2018/03/25/could-cannabis-help-cure-lung-cancer-this-man-thinks-so-and-hes-already-spent-1-5m-on-research-7266643/

However, you'll note that both articles are quick to point out that any potential positive effects have only been studied in petri dishes or on mice in a laboratory (in vitro). This is not the same as testing and discovering positive effects in humans. So far CBD/THC is still less effective than current drugs and dosages have not been tested or proven." CY

Here is more information about studies done so far in vitro from the National Cancer Institute: https://www.cancer.gov/about-cancer/treatment/cam/hp/cannabis-pdq#section/_7 (medical professional version)
https://www.cancer.gov/about-cancer/treatment/cam/patient/cannabis-pdq#section/_3 (patient version. See answers to questions 6 and 7)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6043845/
https://www.mayoclinic.org/healthy-lifestyle/consumer-health/expert-answers/is-cbd-safe-and-effective/faq-20446700

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@merpreb

@gazza- Good morning and welcome to Mayo Connect. I'm glad that you found us. What a great story you have! Other than CBD oil are you taking? Do you use inhalers? What kind of inoperable lung cancer do you have? Life is a mystery, isn't it. Somethings, that are "not suppose to" happen do just that. But there is very little known about the effects of CBD oil and it's benefits for a lot of things. I'm not suggesting that CBD oil did not have an effect on your cancer. Anything can happen and it's certainly is wonderful that your cancer is literally only hanging on by a thread.
You are a very brave man to have turned away suggested treatments, but as you say, and I do agree, the quality of life certainly is of upmost importance.
"There have been recent news stories about the potential promise of CBD and/or THC oil and fighting lung cancer, such as these news stories:
https://abcnews.go.com/Health/Healthday/story?id=4506595&page=1
https://metro.co.uk/2018/03/25/could-cannabis-help-cure-lung-cancer-this-man-thinks-so-and-hes-already-spent-1-5m-on-research-7266643/

However, you'll note that both articles are quick to point out that any potential positive effects have only been studied in petri dishes or on mice in a laboratory (in vitro). This is not the same as testing and discovering positive effects in humans. So far CBD/THC is still less effective than current drugs and dosages have not been tested or proven." CY

Here is more information about studies done so far in vitro from the National Cancer Institute: https://www.cancer.gov/about-cancer/treatment/cam/hp/cannabis-pdq#section/_7 (medical professional version)
https://www.cancer.gov/about-cancer/treatment/cam/patient/cannabis-pdq#section/_3 (patient version. See answers to questions 6 and 7)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6043845/
https://www.mayoclinic.org/healthy-lifestyle/consumer-health/expert-answers/is-cbd-safe-and-effective/faq-20446700

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I should have said that I have non small cell lung cancer.I do not use inhalers. The only other thing I used initially was not from concentrate tomato juice as I had read on an American site that it might help to stop cancer becoming metastatic.I do not class myself as brave only realistic. The brave people are those firemen who went into the Twin Towers.
The other reason I turned down traditional treatment was that it is not good for elderly people because chemo kills good and bad cells and when you are old you do not replace the good cells quickly and thus the bad ones can spread much more easily round the body.
A lady I know who also lives in Staffordshire was diagnosed in summer 2018 with Grade 3 aggressive breast cancer 33 mm and lymph nodes in her neck and armpit 25 mm. She used a similar CBD oil and in spring 2018 the cancer was 7 mm and the nodes 4 mm. She recently said the cancer had started growing again but after more oil it was going down again.
I do not think that CBD oil is necessarily a cure but if a person has inoperable/terminal cancer then the oil can prolong the time you may be alive.

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@lizdorn

Hi everyone. My name is Liz. I have nsclc. It’s coming up to 3 years. My oncologist originally told me I had 6 months to live. Haha!’ I am in between trials. Waiting for Mayo to review my medical history and hopefully find me a trial. Look forward to chatting

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Good morning @lizdorn. Have you heard from Mayo Clinic yet? How are you feeling?

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@gazza

I should have said that I have non small cell lung cancer.I do not use inhalers. The only other thing I used initially was not from concentrate tomato juice as I had read on an American site that it might help to stop cancer becoming metastatic.I do not class myself as brave only realistic. The brave people are those firemen who went into the Twin Towers.
The other reason I turned down traditional treatment was that it is not good for elderly people because chemo kills good and bad cells and when you are old you do not replace the good cells quickly and thus the bad ones can spread much more easily round the body.
A lady I know who also lives in Staffordshire was diagnosed in summer 2018 with Grade 3 aggressive breast cancer 33 mm and lymph nodes in her neck and armpit 25 mm. She used a similar CBD oil and in spring 2018 the cancer was 7 mm and the nodes 4 mm. She recently said the cancer had started growing again but after more oil it was going down again.
I do not think that CBD oil is necessarily a cure but if a person has inoperable/terminal cancer then the oil can prolong the time you may be alive.

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@gazza- Good morning. I was thinking about you this morning. How are you doing? Are you having any difficulties breathing or any pain?

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@margot69

Merry, that would cost a fortune here and I am not physically up to it. I think I need to call so done this morning or go to ER. My whole chest is hurting. No temp. Need to get dressed. And, more hair falling out.

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@margot69- Hi Margot, how are you feeling? Did you go to the ER? What happened?

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@olgamarie

Hi Margot, I had the same trouble as you with a doctor and there was no way he would listen to me. As I was checking out, I told them I would not be back and found someone to replace him. It is so difficult when you are going to the best and he doesn't HEAR you. Bring a close friend, relative with you to your appointment, so when you speak to the doctor that person can affirm what you are saying with a nod or verbal reply. If not that, when the doctor comes in, look at him square in the face and tell him I want you to listen to me in a firm voice. Maybe these suggestions may work. If not, remind yourself that you are doing the best you can and you chose the best. And this should being out a "best"outcome. Blessings.

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@olgamarie-Good morning. How are you doing? I haven't heard from you in a while. How are you feeling? Where are you in therapy?

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@burrkay

Hi @lisdorn...can you tell us the doctor's name in Maryland? My wife's oncologist left Mayo and went there. We would like to stay in touch with him.

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@burrkay- Good morning. I'm wondering how your wife is doing. And how are you doing?

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