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.

Merry post Christmas! We have been at our daughter's house and our son came over also. I opted not to say anything so we could enjoy a nice Christmas. I had eantes to talk to them face to face but he had to leave. I did tell my daughter last night and we had a good cry. While I have been gone, I saw two messages come through from Goukd that said test results. Hard to believe they have OET scan results up. I still haven't read them. I did see that, in addition to a lung biopsy, the doctor has orders in for a liver biopsy and brain MRI. This can't be good. We are actually in the car now on the way home and I still don't want to read that. I don't want to go home. Still not sure what to do. I am sure they will refer to one of their Oncologist's but I do want a second opinion and husband, or myself, are not anxious to travel. What a hassle and I suffer from some a nudity issues. I guess that leaves me with Stanford or UCSF. I am petrified. Pulmonologist gave me the impression I have the aggressive form, forget what it is called. Is a lung biopsy painful? They won't knock you out.

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We were told in April this was to be the standard care now for Lung Cancer - I am assuming that because he was a part of the clinical study - they still have to keep it classified as that for him and do follow ups on him as long as he want to remain getting the treatments etc. Not my husband - his mother, father and him were/are just good friends - mother has been in nursing home since Dec 3 2004 at 7 p.m. fter 2+ weeks in hospital in Indy - she just died yesterday morning at 6:24 a.m. from new complication; his father died on Jun 28th 2018 after fighting not making red blood cells since diagnosed Nov 2016 , the son was diagnosed with lung cancer in Oct 2017 I am just the caregiver, friend, Pain-in-the-Ass (PIA), the bitch on wheels whatever else they call me sis 2 sisters and step sister could give a dam I was joint P.O.A. for the mother - I was P.O.A. & Medical P.O.A. and I did put a what If in that it would transfer to a daughter. Like I told others this week i have "Sucker" written across my forehead - I stayed with the mother 2/4 and the most the daughter showed up to be with her mother was 2 hours for 4 of the days she did not even come in on christmas day to see her mom. I promised the dad i would stick around for the son and he made provision that it could be done.

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We were told in April this was to be the standard care now for Lung Cancer - I am assuming that because he was a part of the clinical study - they still have to keep it classified as that for him and do follow ups on him as long as he want to remain getting the treatments etc. He is on the
immunology only now he has done genetic testing to have foot in door if the immunology fails, growth begins again or immunology stops workign or a better treatment/study becomes available. He can give up any time he wants - and this could be a very likely possibility now he lost his dad on June 28th, his mother yesterday and his 2 sisters, and step sister could give a rats as in hell but them selves the one brother is in a half-way house since 2004 and has health problems himself - so its only me left to make share he is properly cared for - and I have only been family friend, caregiver and lived with the mother/father since may 1994

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@reibur1951

We were told in April this was to be the standard care now for Lung Cancer - I am assuming that because he was a part of the clinical study - they still have to keep it classified as that for him and do follow ups on him as long as he want to remain getting the treatments etc. Not my husband - his mother, father and him were/are just good friends - mother has been in nursing home since Dec 3 2004 at 7 p.m. fter 2+ weeks in hospital in Indy - she just died yesterday morning at 6:24 a.m. from new complication; his father died on Jun 28th 2018 after fighting not making red blood cells since diagnosed Nov 2016 , the son was diagnosed with lung cancer in Oct 2017 I am just the caregiver, friend, Pain-in-the-Ass (PIA), the bitch on wheels whatever else they call me sis 2 sisters and step sister could give a dam I was joint P.O.A. for the mother - I was P.O.A. & Medical P.O.A. and I did put a what If in that it would transfer to a daughter. Like I told others this week i have "Sucker" written across my forehead - I stayed with the mother 2/4 and the most the daughter showed up to be with her mother was 2 hours for 4 of the days she did not even come in on christmas day to see her mom. I promised the dad i would stick around for the son and he made provision that it could be done.

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@reibur- That's wonderful. However if you get immunotherapy you have to have a certain gene for it, don't you? Have they found a treatment for all types of cancer? There are a lot of them.
Some families are pretty tough to understand. It's certainly difficult to say who should be treated well and who shouldn't by other family members. You are a good person to stick with this family. They certainly have had a horrible year.

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No the immunology - is done after the chemo is all over with - it could be up to 2 years its my understanding if no reaction to the drug and it works - it helps you body to fight the bad stuff - they had found getting the chemo/immunology together gave the lung cancer patients a better fighting cance hence the week 1 chemo/immunolgy week 2 & 3 just chemo times 4 equal 12 weeks - then the immunology like i said I read it could be up to 2 years can have maybe even longer - - just taking it one step at a time - its all in God's hands

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sorry one track mind I am not sure of other cancers - i think the one chemo he got was used in breast cancer found it helped in lung cancer - so yes I THINK some of the chemo's are crossing the lines - - just GOOGLE do your own research and then go to your Dr with a long list of questions and demand answers - etc. untill you are satisfied DO NOT take a non-communicative dr - immediately change if he will not communicate answer questions - also if you have a Medical Care P.O.A. that this is made clear in it

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Hi everyone, finally an update. Right now appointments start Jan. 11and also Mon. 14. Anybody travelling across SD about then, lol? VA is not responding about referral, so will fund on my own, that's what credit cards are for. Gone Blvd on Friday, will probably be having panic attacks throughout the visit, where is a good close place to stay. Will call the concierge soon. Continue to thank you all for being there I hope to be more of a giver soon!!

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@margot69

Merry post Christmas! We have been at our daughter's house and our son came over also. I opted not to say anything so we could enjoy a nice Christmas. I had eantes to talk to them face to face but he had to leave. I did tell my daughter last night and we had a good cry. While I have been gone, I saw two messages come through from Goukd that said test results. Hard to believe they have OET scan results up. I still haven't read them. I did see that, in addition to a lung biopsy, the doctor has orders in for a liver biopsy and brain MRI. This can't be good. We are actually in the car now on the way home and I still don't want to read that. I don't want to go home. Still not sure what to do. I am sure they will refer to one of their Oncologist's but I do want a second opinion and husband, or myself, are not anxious to travel. What a hassle and I suffer from some a nudity issues. I guess that leaves me with Stanford or UCSF. I am petrified. Pulmonologist gave me the impression I have the aggressive form, forget what it is called. Is a lung biopsy painful? They won't knock you out.

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@margot69 - Please try to remember and understand that until you have these biopsies, you do not really know if you have cancer. I can understand how anxious you are as I have been through all of this myself. As I told you before, I had 2 lung biopsies, one liver biopsy and one vertebrae biopsy. None are very painful although my vertebrae was sore for weeks. You will not be knocked out for the lung biopsy because you need to breathe properly. They completely numb the area, do the biopsy which is very fast while looking at your scan on the screen next to you, and then give you a shot through your IV for pain. If you need more, they will give you more. The liver biopsy is pretty easy, again you will be numbed, feel pressure and hear the tool pop to get the biopsy and it is over. None were a big deal to me. I guess once you have been through labor nothing is as bad! You will never have to worry about nudity issues....you will always have on a hospital gown and blankets. The lung biopsy is done through your back. The liver biopsy is done in the front but you are completely covered except for the tiny area being biopsied. Take some deep breaths and try not to worry .....easy for me to say but hey, I been terminal for over 4 years!! Hope you got home safe and will sleep well in your own bed tonight!

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@seaspray

@margot69 - Please try to remember and understand that until you have these biopsies, you do not really know if you have cancer. I can understand how anxious you are as I have been through all of this myself. As I told you before, I had 2 lung biopsies, one liver biopsy and one vertebrae biopsy. None are very painful although my vertebrae was sore for weeks. You will not be knocked out for the lung biopsy because you need to breathe properly. They completely numb the area, do the biopsy which is very fast while looking at your scan on the screen next to you, and then give you a shot through your IV for pain. If you need more, they will give you more. The liver biopsy is pretty easy, again you will be numbed, feel pressure and hear the tool pop to get the biopsy and it is over. None were a big deal to me. I guess once you have been through labor nothing is as bad! You will never have to worry about nudity issues....you will always have on a hospital gown and blankets. The lung biopsy is done through your back. The liver biopsy is done in the front but you are completely covered except for the tiny area being biopsied. Take some deep breaths and try not to worry .....easy for me to say but hey, I been terminal for over 4 years!! Hope you got home safe and will sleep well in your own bed tonight!

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Thank you, sea spray. Actually, I have been thru labor 3 times with nothing but a numbing shot before the epesiotomy. I have had a liver biopsy as I have had other medical issues nobody can figure out and my GI doctor wanted to check for Autoimmune Hep. To,d him I did not want to be awake. I don't remember a thing. I have had a number of surgeries. When it comes to needles, forget it. We just pulled into town after almost 8 hours in the car. I will have to sit diwn later tonight and read those messages. If he is ordering the other tests, I can only assume the worst. Niw hat we have left San Diego, I see there is a Scripps MD Anderson diwn there and it looks like maybe they are part of MD Anderson in TX.

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@meka

Hi everyone, finally an update. Right now appointments start Jan. 11and also Mon. 14. Anybody travelling across SD about then, lol? VA is not responding about referral, so will fund on my own, that's what credit cards are for. Gone Blvd on Friday, will probably be having panic attacks throughout the visit, where is a good close place to stay. Will call the concierge soon. Continue to thank you all for being there I hope to be more of a giver soon!!

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@meka-yay- travel safely. Do you know what tests that they plan to do?

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