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?

@lady1lake

Get the port. It will save you from having to have a vein accessed for each infusion. 10 years ago I had one put in for breast cancer chemo, then had it removed a year later. It was such an easy procedure. Then had it replaced last year for lung cancer. It is an easy operation, never even think of it still being there. Am keeping it this time around & having it flushed every 6-8 weeks to keep it in good working order. That way the nurses can draw the blood tests from the port with no problems. So easy & totally painless.

Jump to this post

Hi @lady1lake, We haven't heard from you for a bit. How are you?

REPLY

Hi I am CArla – a 6-year survivor of NSCLC and more recently of hepatocellular carcinoma. Now confronted with what may be a recurrence of my lung cancer, maybe a new one, may be nothing. Scary however to go back to the world of PET scans and biopsies. I am curious – six years ago my lung cancer was I think they called it wild type – no interesting mutations/markers. I had surgery but no other treatment. Curious now if there are better systemic treatments for "no interesting genes". My doctor had mentioned immunotherapy but does that work only if there are specific genes involved. I would not want old fashioned chemo – at my age I don't know if I could survive it with any quality of life at all. Thanks

REPLY

@bentrivercarla DOn't have an answer for you, but it certainly is an interesting question and I'd like to find out as well. In the meantime, I am sure there are newerways to fight the cancer IF it has returned. I haven't even come up to six months since having a VATS and lobectomy for adenocarcinoma. It was Stage 1 when found andso small they didn't do anything else after the surgery either. Just waiting for a CT scan in September. I know things change in treatment now faster than it seems one can keep up. I will be thinking of you and praying for you. Do NOT give up hope

REPLY
@bentrivercarla

Hi I am CArla – a 6-year survivor of NSCLC and more recently of hepatocellular carcinoma. Now confronted with what may be a recurrence of my lung cancer, maybe a new one, may be nothing. Scary however to go back to the world of PET scans and biopsies. I am curious – six years ago my lung cancer was I think they called it wild type – no interesting mutations/markers. I had surgery but no other treatment. Curious now if there are better systemic treatments for "no interesting genes". My doctor had mentioned immunotherapy but does that work only if there are specific genes involved. I would not want old fashioned chemo – at my age I don't know if I could survive it with any quality of life at all. Thanks

Jump to this post

@bentrivercarla – Good morning and welcome to Mayo Connect. It's extremely disconcerting to have a cancer recurrence. My lung cancers began 22 years ago. I have multifocal adenocarcinoma of the lungs. It's a form of NSCLC. My last one was almost 2 years ago. Ten years after my first lung cancer, a stage 1A, and no treatment either I had my second one. And I was given a choice as to whether or not to have chemo. I did. It was rough and I was also in my early 60's. Sixty-one to be exact. Most chemo's are pretty rough but survivable and tolerable. It's best not to rule out any options before you know more about what is going on. I have not had traditional radiation but SBRT's. This is using "outer space" atoms, like photons and protons as beams and are carefully targeted with less damage to other organs. There are also many less side effects.

I have no idea what your doctors mean by uninteresting markers or mutations or a wild type. You need to question your doctors until they are sick of you and then keep asking questions. I'm uncertain if you have had your dreaded PET scan and biopsy as yet. Let's take this one step at a time and see where there leads you. Does this sound like a reasonable thing in an unreasonable time?

REPLY

Reasonable response thanks. Appreciate help not getting ahead of myself. I have had proton beam therapy and it is awesome indeed (for my liver cancer). I am fairly weakened at 77 and two cancers (lung and liver) and other health issues also. Since if this is cancer it is probably fair widely disseminated (many lesions) my docs always change the subject to traditional chemo when I tell them targeted or immuno would be acceptable. If chemo is offered I will likely decline and move to a state where medically assisted dying is legal. That will take some time. I should know more about what is happening next week and hopefully the news will be all good. Thank you

REPLY

@bentrivercarla– Oh dear, I must have misread your post. I thought that it was just discovered. I'm sorry that you had to make this choice but I can certainly understand it. It's all about the quality of life-choices that we want to make for what we see in our own personal future. I'm 72 now and since my cancer is likely to return I might have to, at some point make this this same decision. I just hope that I will be as brave as you. Will you let me know after your appointment what the doctor said?

Liked by alamogal635

REPLY
@bentrivercarla

Hi I am CArla – a 6-year survivor of NSCLC and more recently of hepatocellular carcinoma. Now confronted with what may be a recurrence of my lung cancer, maybe a new one, may be nothing. Scary however to go back to the world of PET scans and biopsies. I am curious – six years ago my lung cancer was I think they called it wild type – no interesting mutations/markers. I had surgery but no other treatment. Curious now if there are better systemic treatments for "no interesting genes". My doctor had mentioned immunotherapy but does that work only if there are specific genes involved. I would not want old fashioned chemo – at my age I don't know if I could survive it with any quality of life at all. Thanks

Jump to this post

Hi Carla-
Not sure what your doctors are referring to as "no interesting genes or mutations", but like others suggested ASK QUESTIONS,UNTIL THEY ARE TIRED OF HEARING FROM YOU! Tell them you want a scientific answer with true definition. Don’t hold back!
Seems like the standard answer when the oncologist immediately goes to immunotherapy…you don’t want off the shelf “canned” solutions!
Ask them about a molecular study of the biopsies…if you need a fresh biopsy, get it done. How can they treat the cancer with any level of science unless they know specifically what the mutation is?
My wife was put on immunotherapy and after months of treatments they found her cancer getting even more aggressive…they ordered a molecular study and found that hers is a HERR2, ERBB2 mutation in her lung, which does not respond to the “Off the shelf” immunotherapy drugs. Our oncologist told her that normal prognosis for her cancer would be 9 months. That was in 2016…she is still on the planet today because the molecular study led to her oncologist putting her on a clinical trial-with treatment. Her quality of life is excellent!
So…end of my epistles…ask questions and get answers!
Good luck!

REPLY

@burrkay– Excellent post. I agree, ask and ask and ask. The only acceptable answer is fact based science or I don't know. I've been known to tell doctors that their answers weren't complete enough or not good enough. Doctors are people, not gods. They are fallible and should work hard for your well being. Anything short of that should be a sign that you need another doctor, if possible. Don't you think?

Liked by bluelagoon

REPLY

@bluelagoon – hi! How are you? Are you well?

REPLY

Hello All:

As you are all lung cancer survivors, I thought you would find this article interesting about how Katherine and her participation in clinical trials.
https://intheloop.mayoclinic.org/2019/07/09/clinical-trials-key-to-lung-cancer-patients-survival/?
If you have been involved in a clinical trial, would you please share your story as well?

REPLY
@hopeful33250

Hello All:

As you are all lung cancer survivors, I thought you would find this article interesting about how Katherine and her participation in clinical trials.
https://intheloop.mayoclinic.org/2019/07/09/clinical-trials-key-to-lung-cancer-patients-survival/?
If you have been involved in a clinical trial, would you please share your story as well?

Jump to this post

@hopeful33250– Thank you so much for sharing this.

REPLY
@merpreb

@bluelagoon – hi! How are you? Are you well?

Jump to this post

I'm hanging in there! Won't know my results till Late August, early Sept!

REPLY
@merpreb

@bluelagoon – hi! How are you? Are you well?

Jump to this post

@merpreb Merry- thanks for asking! Time flies- I'm almost ready to hit Mayo for my next quarterly check. And, knock wood, feel better than ever. (I recently noticed that in a yoga class just doing a basic child's pose how my lungs & I feel less "claustrophobic".) On the flip side, I can certainly relate to the fears that come up here with COPD and such after recently seeing how Leonard Nimoy's wife has reached out to get people to wake up to how it so significantly affected him. Knowing that it's there taking a nap in me is just fine on some days and then when someone mentions it I wonder how I got blessed with both it and the cancer!

REPLY
@wally1940

I'm hanging in there! Won't know my results till Late August, early Sept!

Jump to this post

@wally1940– Good morning. Haven't heard from you in a while. What tests have you had and what kind of cancer do you have?

REPLY
@bluelagoon

@merpreb Merry- thanks for asking! Time flies- I'm almost ready to hit Mayo for my next quarterly check. And, knock wood, feel better than ever. (I recently noticed that in a yoga class just doing a basic child's pose how my lungs & I feel less "claustrophobic".) On the flip side, I can certainly relate to the fears that come up here with COPD and such after recently seeing how Leonard Nimoy's wife has reached out to get people to wake up to how it so significantly affected him. Knowing that it's there taking a nap in me is just fine on some days and then when someone mentions it I wonder how I got blessed with both it and the cancer!

Jump to this post

@bluelagoon– Hi! We've missed hearing from you. I agree that COPD is a formidable foe. Just keep doing what you are doing to stay healthy. I recently spoke with my oncologist and she said that not-smoking is the biggest no-no for COPD and unless there is a big change that needs a follow-up that we should concentrate on how to remain as healthy as we can and not worry about it. I know, easier said than done. I'm with you on the cancer and COPD, We can only do our best. Are you doing any inhalers?

REPLY
Please login or register to post a reply.