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

@reibur1951- Good morning. It's incredible the new terms and treatments that have shown up for lung cancer just in the past few years. You are a medical dictionary now! Did you ask why they did the biopsy on the nodule that was showing success?

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Yes when I discovered i immediately e-mailed Maggie the oncologist/clinical study nurse she consulted regular oncologist and he felt this would still provide good information. and she said I told them that as well, but I think they thought the axillary node would be safer to biopsy.

We just assumed since it was the supraclavicular neck lymph node that was not responding that would be the one again biopsied - its been the one biopsied the last 2 times one done in April 2018 after the 12 weeks of chemo and the other done within the last 6 months - they done the LT Axilla Lymph node in Oct/Nov 2017 when they found the cancer involved the lymph nodes of the chest and when examining after the PET found it and the supraclavicular neck lymph node swollen (which is now more visible than back then) they done the LT Axilla Lymph node first and said if it came back positive they would not move up to the supraclavicular neck lymph node that day -

To me I think it would of been the supraclavicular neck lymph node since from what was discussed about the Genomic testing about mapping out the tumor characteristic and why it was not responding and if there is any treatment/chemo that is available but what do I know I am only a common lay person... there is follow up after the test results are in

Yes there is a lot of medical terminology... but not new to it mother was a nurse, I took the EMT course for my home town in fall of 1984-Jan 1985; done non-paid volunteer training was the top of my class and and was told I got the highest scores of anyone of the service on the state exam Maybe it will help me to understand the DNA test i took for my family genealogy of which with all goign on I have not had time to study but its out there of others to contact me in my family research which is slow at this moment too.

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@cindylb

Hello all,
Well.............results are in from my husband's latest PET scan for his 'possible lung, we don't really know what kind of cancer it is' test. Over a year of tests and they still don't have any more information on the cancer type, there is no visible point of origin or type, the tumor in my husband's lung has gotten smaller (only slightly) and the activity in his lymph node and cancer activity in his blood is up (only slightly). The doctors assessment, "Well, we thought when we first diagnosed this that you would be dead now, but the cancer, as of today is 'stable' and we'll see you again in three months".
It's good news at first glance but it is still a mystery, very unsettling and frustrating, as there is still no path forward, no treatment plan and no answers. Oddest thing ever. Hugs to all.

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As you say at first glance it is good, but I can see how you would feel unsettled and frustrated. Hope morel night comes to help you and your husband know what is going on. It must be difficult not to KNOW. Praying for you both and hoping you get more clarification between now and the next three months.

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Hello all,
Well.............results are in from my husband's latest PET scan for his 'possible lung, we don't really know what kind of cancer it is' test. Over a year of tests and they still don't have any more information on the cancer type, there is no visible point of origin or type, the tumor in my husband's lung has gotten smaller (only slightly) and the activity in his lymph node and cancer activity in his blood is up (only slightly). The doctors assessment, "Well, we thought when we first diagnosed this that you would be dead now, but the cancer, as of today is 'stable' and we'll see you again in three months".
It's good news at first glance but it is still a mystery, very unsettling and frustrating, as there is still no path forward, no treatment plan and no answers. Oddest thing ever. Hugs to all.

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@reibur1951

Update friend had his radiation consultation on Monday to be 10 days from what said Monday - Friday with Saturday & Sunday off - called today while gone
for the appointment for the for the mask & simulation set up for this coming Wednesday. there could be up to 12 days all total with the set-up and follow up after the radiation treatments.

Back from the Genomics and Biospy (https://iuhealth.org/find-medical-services/precision-genomics the skinny guy in the blue suit is the one we met with Dr. Schneider) and hoping the ultrasound lab did not screw up - they done the LT Axilla Lymph node (this one that has shrunk & responding to treatment and not growing) was under the impression that they were to do the supraclavicular neck lymph node which is the one is growing and not responding to chemo & prembo This took well over an hour longer than before Guess they thought it would be safer to the the LT Axilla Lymph node than the supraclavicular neck lymph node it is very noticeable in size.

The literature we got the testing is GPS Cancer molecular profiling and Liquid GPS The Genomics Dr. looked mainly at the supraclavicular this was to find out if there is any other chemo/treatment to get it under control Right now i don't see in my mid how testing etc the wrong lymph node will provide the data they want but what do I know....

Shall be a tiring couple of weeks with the radation trips...

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@reibur1951- Good morning. It's incredible the new terms and treatments that have shown up for lung cancer just in the past few years. You are a medical dictionary now! Did you ask why they did the biopsy on the nodule that was showing success?

REPLY

Update friend had his radiation consultation on Monday to be 10 days from what said Monday - Friday with Saturday & Sunday off - called today while gone
for the appointment for the for the mask & simulation set up for this coming Wednesday. there could be up to 12 days all total with the set-up and follow up after the radiation treatments.

Back from the Genomics and Biospy (https://iuhealth.org/find-medical-services/precision-genomics the skinny guy in the blue suit is the one we met with Dr. Schneider) and hoping the ultrasound lab did not screw up - they done the LT Axilla Lymph node (this one that has shrunk & responding to treatment and not growing) was under the impression that they were to do the supraclavicular neck lymph node which is the one is growing and not responding to chemo & prembo This took well over an hour longer than before Guess they thought it would be safer to the the LT Axilla Lymph node than the supraclavicular neck lymph node it is very noticeable in size.

The literature we got the testing is GPS Cancer molecular profiling and Liquid GPS The Genomics Dr. looked mainly at the supraclavicular this was to find out if there is any other chemo/treatment to get it under control Right now i don't see in my mid how testing etc the wrong lymph node will provide the data they want but what do I know....

Shall be a tiring couple of weeks with the radation trips...

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@sakota

Hi everyone been awhile since i’ve Been in here. Hope everyone is doing the best they can and relying on family , friends, doctors and their faith in going on each day. Life is a gift granted it has a lot of bumps in the road

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Hi Joan- How are you? Lots of new posts. Can you tell us how your healing is going?

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Hi everyone been awhile since i’ve Been in here. Hope everyone is doing the best they can and relying on family , friends, doctors and their faith in going on each day. Life is a gift granted it has a lot of bumps in the road

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@manderlay- Hi. Fatigue is the number one complaint for any type of treatment for cancer. I was SO tired, it's a fatigue that is so deep that even a nap doesn't help, or for that matter sleeping at might. All he can do is rest and lots of water. I'm glad that he will see his doctors soon. How are his spirits? How is the rest of the family holding up- including you?

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@merpreb

@manderlay- Good morning and welcome to Mayo Connect. Your English is very good. I can not imagine how difficult it must be to see your dad so ill and he's lucky to have you doing some research for him. I am a lung cancer survivor and your dad's cough is very common for people with lung cancer with or without blood. I had blood when I coughed. I think that after 3 weeks that the cough from smoking should pretty much be gone, but I'm not sure. Maybe your dad feels a trickle in his throat that makes him cough. Sometimes heart conditions can cause coughing. You might want to look that up as to why that happens. He could also have some post-nasal drip that is causing this, or a combination of them. And some medicines can cause coughing. It's so difficult to know or pinpoint what type of cough it is and from what but since he has lung cancer I would place my bet on that. There are lots of meds to help calm coughing but your dad's oncologist should be the person to prescribe something because he will know which meds won't interfere with his chemo.
It's very important that he drink lots of water to help rid his body of chemicals and help keep his mucus from getting thick. Is your dad having any pain? Other than the cough does he have any other symptoms? It's very good news that your dad has no metastasis in other organs. Do the doctors know why there is fluid around his heart?

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Hello @merpreb, thank you very much for the nice words. I am very happy for you beating the cancer! I wish you all the best!
I think for now the cough is my father's main symptom. Maybe I can identify the fatigue as a second symptom. Other than that I don't think he has other symptoms. I booked appointments for next week for a cardiologist and for а pulmonologist today, I hope the latter give us some ideas for cough relief. The doctors do not know what caused the pericardial effusion (the liquid around the heart) because they decided not to drain it so it is not tested. They gave him some medication for that and next week when we see the cardiologist they will measure the liquid and see if the medication works. If it does it would mean that it is probably caused by some infection.
Was your cough all the time? He has some periods of time in which he does not cough at all but there are the others that he just can't stop and I worry because it makes it hard to sleep. And we all know that you should sleep to have better chances of fighting.

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@burrkay

@cindylb Good luck to you and your husband in getting answers.

This is a link to the web site for Foundation One...
https://www.foundationmedicine.lt/content/dam/rfm/lt_LT/Documents/Foundation%20Medicine%20Sample%20Report.pdf
The “Sample” report shown is very similar to that which came back from their study of my wife’s lung biopsy. It took 5 weeks to get the results...so be patient.

My suggestion is that you have your husband’s oncologist consider them as a qualified resource.

Their recommended treatment strategy (in my wife’s case) was implemented by our Mayo oncologist for her in December of 2016.

She is still on the planet, and living a pretty normal life!

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Thank you for the information. We have already done the Foundation Testing via our cancer center here in Colorado at CU Medical Center and again, no results, except they found one element of the test that suggested lung cancer vs. upper GI but not enough to recommend treating for lung cancer. It didn't offer any clear answers either. So on we go. So pleased to hear your wife is still here fighting and living as best she can. Hugs.

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