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?

@merpreb

@2onlow8– Good morning. Oh boy, just what you don't need! Have they spoken with each other about what they are disagreeing about? May I ask what the difference between the two are?

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@merpreb I have not had this frank discussion with either yet as I've just noticed the problem after my regular 3 week bloodwork/Dr. Consult/Infusion yesterday. In typing up my notes afterwards I see a pattern wherein my 2nd-opinion-Dr suggests a course of treatment that my primary oncologist immediately overrides, then later arrives at the same conclusion and this has been very successful twice during my treatments which have included: simultaneous Cisplatin and radiation for 5 weeks one year ago. Followed with Imfinzi immunotherapy which allowed my cancer to spread in 2 months to lung 2 as well as into blood stream, lymph nodes. (I am of the 2% of Imfinzi patients that this happens to apparently. Lucky me.) Stage 3 is now at Stage 4 NSCLC. Another 2 months of Taxotere chemo followed that didn't arrest growth either. In addition to PET scans every 3 months, my CEA counts in my regular blood tests (every 3 weeks prior to infusions) have proven to be very accurate in tracking my successes and failures in treatment. Apparently this measurement isn't commonly used for lung cancer, but works precisely well for me. At this point I brought in my 2nd opinion oncologist who suggested I get Foundation One testing. Among other things this showed I had PDL of 70. He suggested I switch chemo to Alimta and my local onc agreed. This brought my CEA number way back down and PET scan showed great promise after 6 infusions. He also told me that "when Alimta stopped being effective" (as he knew it would apparently) we should ADD Keytruda simultaneously to Alimta. And that's where we are yesterday. CEA number has started slowly back up. My primary oncologist wants to get me into a clinical trial suggested by Foundation One and that is being more thoroughly investigated to see if I qualify and Keytruda will be ordered and processed through my insurance before I get it in 3 weeks. My primary is not sure about adding it to Alimta and is concerned about overwhelming side effects. In typing this to you just now I think I have answered my own question/concerns and should be glad that my primary is open to my secondary's suggestions and is thoughtfully concerned with side effects on me. So I guess I'll see how this all transpires in a few weeks with fingers crossed that Alimta can keep the wolves at bay in the meantime. Very grateful to have 2 good doctors who try to solve these mysteries and haven't given up on me.

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@colleenyoung

Hi @margot69, so good to hear from you again. I was wondering about you. @karen43 and @lady1lake have experience with whole brain radiation therapy (WBR) for metastasized lung cancer. (https://connect.mayoclinic.org/discussion/small-cell-lung-cancer-1/?pg=6#comment-263340)

Did your oncologist talk to you about dental care before starting WBR?

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Hi Merry,
I will check out that link, thank you. I am not having a good week, feeling sicker every day since tgat Infusuon but not sure if it is the cancer, chemo or Keytruda.
No, they did not mention dental care but I try to watch that closely. Due to chronic dry mouth and throat for years. I had $$$$ of dental work last year. Great!! My Oncologist tells me next to nothing.

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@margot69

Hi Merry,
I will check out that link, thank you. I am not having a good week, feeling sicker every day since tgat Infusuon but not sure if it is the cancer, chemo or Keytruda.
No, they did not mention dental care but I try to watch that closely. Due to chronic dry mouth and throat for years. I had $$$$ of dental work last year. Great!! My Oncologist tells me next to nothing.

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@margot69– I know, the chemo and all the other crap is wreaking havoc on your health. I'm sorry. If there's a change in how you're feeling it's most likely that last thing that you had.
If you have the strength it's beyond time to sit your oncologist down and tell him that you don't feel like you are getting enough information from him. That you know that you are I'll but you need to know the truth, all of it
Can you do that?

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@merpreb

@margot69– I know, the chemo and all the other crap is wreaking havoc on your health. I'm sorry. If there's a change in how you're feeling it's most likely that last thing that you had.
If you have the strength it's beyond time to sit your oncologist down and tell him that you don't feel like you are getting enough information from him. That you know that you are I'll but you need to know the truth, all of it
Can you do that?

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He is not good about answering questions on line at all. I can ask him questions when I see him and he will answer but does not really "discuss" things. Wakelee is good about answering questions but she is not technically my treating doctor. Makes it more complicated as there is no real treatment for my cancer.

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@colleenyoung

Hi @llwortman @burrkay @alicantina1 @merilee @alvinw @shortshot80 @mryzuch @amws @pearlgee @cheris @annette1 @cheris @windwalker @lesbatts @major @bestcare and @sistergoldenhair

I’d like to invite you to the new group dedicated to discussions about lung cancer. It’s a space where we can ask questions, share tips and learn from each other. Whether you in treatment or caring for someone with lung cancer, or you’re a lung cancer survivor, please join us.

Pull up a chair and tell us a bit about yourself.

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Hey new here, but been reading a lot of the post that arre here. Im an 80 year old wih lung cancer. Kinda funny how it has all come about. Last Feb, I fell on Ice and hurt my shoulder. I had let it go forawhile until I finally went to the Doctor to have it checked. They most certainly knew that I had rotator cuff. But, an MRI was ordered. Turns out no Rotator cuff, but rather a tumor Went to a local radiation oncologist and then from there I went to Mayo. What A GREAT experience that was. At any rate, I just started Immune therapy once every three weeks. After my first treatment, there seems to be no side affects. Dont know how long that wll last.Right now I feel very good.
Thanks for you forum
Merle

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@mbach1074

Hey new here, but been reading a lot of the post that arre here. Im an 80 year old wih lung cancer. Kinda funny how it has all come about. Last Feb, I fell on Ice and hurt my shoulder. I had let it go forawhile until I finally went to the Doctor to have it checked. They most certainly knew that I had rotator cuff. But, an MRI was ordered. Turns out no Rotator cuff, but rather a tumor Went to a local radiation oncologist and then from there I went to Mayo. What A GREAT experience that was. At any rate, I just started Immune therapy once every three weeks. After my first treatment, there seems to be no side affects. Dont know how long that wll last.Right now I feel very good.
Thanks for you forum
Merle

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@mbach1074 – Welcome to Mayo Connect and good morning. My lung cancer was found much like yours! I bumped into something and after a couple of weeks, when the pain hadn't subsided I had an Xray- It was very obvious that I had a lung tumor and not broken rib. I'm glad that you are already in treatment. What kind and stage of lung cancer do you have?

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This week's Mayo Clinic Connect member spotlight features @Cindylb, a member who has been active in this discussion and often supports others here in the Lung Cancer group. Get to know more about @cindylb, her Connect experiences and how getting support from all of you helps. You'll also get a glimpse of Cindy and what she enjoys offline, too.

– Sustained on Her Journey by Connect Members: Meet @cindylb https://connect.mayoclinic.org/page/about-connect/newsfeed-post/sustained-on-her-journey-by-connect-members-meet-cindylb/

Be sure to subscribe (+Follow) the About Connect page https://connect.mayoclinic.org/page/about-connect/ and see new member spotlights published every 2 weeks.

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My name is Colleen also and have stage 4 lung cancer. Meet Mrs. Trait and she suggested this sight. Had 8 treatments of chemo (pemetrexed, carboplatin and pembrolizumab every 21 days.) get sick 8-11 days. Decided to take 3 weeks treatment off trying to recover from last infusions. Think it would be helpful talking to patience with same diagnosis.

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@richcolleen

My name is Colleen also and have stage 4 lung cancer. Meet Mrs. Trait and she suggested this sight. Had 8 treatments of chemo (pemetrexed, carboplatin and pembrolizumab every 21 days.) get sick 8-11 days. Decided to take 3 weeks treatment off trying to recover from last infusions. Think it would be helpful talking to patience with same diagnosis.

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@richcolleen– Welcome to Mayo Connect. I'm glad that you found us and there are many to talk with on the Lung Cancer Group. I have stage 4a multifocal adenocarcinoma of the lungs for the past 10 years and 10 years before that had a fast growing adenocarcinoma. I am a mentor for Mayo Connect's lung cancer group. I have not had immunotherapy but have had regular, nasty chemo.
There are many people here who are taking Keytruda. I hope that they will chime in and answer any questions that you might have about this drug, including, @liz8716, @bentrivercarla
What kind of cancer do you have and have you had any other treatments? You must have been devastated to hear that you had lung cancer. I know that I was. But we march on, don't we? Are you feeling better during your "off" time?

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@merpreb

@richcolleen– Welcome to Mayo Connect. I'm glad that you found us and there are many to talk with on the Lung Cancer Group. I have stage 4a multifocal adenocarcinoma of the lungs for the past 10 years and 10 years before that had a fast growing adenocarcinoma. I am a mentor for Mayo Connect's lung cancer group. I have not had immunotherapy but have had regular, nasty chemo.
There are many people here who are taking Keytruda. I hope that they will chime in and answer any questions that you might have about this drug, including, @liz8716, @bentrivercarla
What kind of cancer do you have and have you had any other treatments? You must have been devastated to hear that you had lung cancer. I know that I was. But we march on, don't we? Are you feeling better during your "off" time?

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Type of cancer “malignant neoplasms of lung adenocarcinoma” my iPad changes spelling of words. Mrs. Trout who I played mahjong with recommend this site which I’m great full she did.

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Sorry I have not updated but fired since radiation has been "stable" with the radiation the neck lymph node as looked and felt like its reduced in size. The last CT was in July and since no longer in the clinical study, no chemo, only immunology KEYTRUDA® (pembrolizumab) every three weeks which he is tolerating very well with no side effects. A CT is scheduled for Oct 2nd.

Me been busy cleaning up 5.3 acres been working every day itrs not raining 6-8+ hours a day made small dent… plus i have tangoed with the dumpster but the dumpster won out. slamming my forehead and nose into it; landing hard on the ground with my right knee… I dusted my self oof walked into house rested for 3 hours and went back to work outside the same day… a couple of scrapes on forehead, nose, did not break of scratch my glasses… did have a side ache for a week or so must of twisted; have a hard head Making head way… A trucker friend came in Wednesday and we have about conquered the front yard weed wacker the yard down with a weed eater with metal blade on it and sawing off seedlings that have sprouted since probably about Nov 2016 when his father no longer mowed the yard and it was the sons responsibility (he done paths only the width of the riding lawn mower) he never even burned the trash he took out to the north only expanded the it from the trash hole to above ground for 5 feet plus…. have the second dumpster about full and waiting for the 3rd 🙁

Things became final on Wednesday the 11th.. waiting for the bank to release the funds only released a mere repentance seven tho it was an escrow account from the title/abstract company… 20th is the release date and soon after I will have a new vehicle factory warrantied… and hen will work on housing… yet to hear from my account 🙁 SO things are looking up if i can survive the clean-up….

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@reibur1951– Good morning. I'm so glad to hear that the lymph node has reduced, and feels better. Tangling with a dumpster does not sound like fun and I'm glad that there were only superficial injuries. I'm not sure what you mean by being fired. Do you mean that you no longer qualify for the clinical trial?

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@reibur1951

Sorry I have not updated but fired since radiation has been "stable" with the radiation the neck lymph node as looked and felt like its reduced in size. The last CT was in July and since no longer in the clinical study, no chemo, only immunology KEYTRUDA® (pembrolizumab) every three weeks which he is tolerating very well with no side effects. A CT is scheduled for Oct 2nd.

Me been busy cleaning up 5.3 acres been working every day itrs not raining 6-8+ hours a day made small dent… plus i have tangoed with the dumpster but the dumpster won out. slamming my forehead and nose into it; landing hard on the ground with my right knee… I dusted my self oof walked into house rested for 3 hours and went back to work outside the same day… a couple of scrapes on forehead, nose, did not break of scratch my glasses… did have a side ache for a week or so must of twisted; have a hard head Making head way… A trucker friend came in Wednesday and we have about conquered the front yard weed wacker the yard down with a weed eater with metal blade on it and sawing off seedlings that have sprouted since probably about Nov 2016 when his father no longer mowed the yard and it was the sons responsibility (he done paths only the width of the riding lawn mower) he never even burned the trash he took out to the north only expanded the it from the trash hole to above ground for 5 feet plus…. have the second dumpster about full and waiting for the 3rd 🙁

Things became final on Wednesday the 11th.. waiting for the bank to release the funds only released a mere repentance seven tho it was an escrow account from the title/abstract company… 20th is the release date and soon after I will have a new vehicle factory warrantied… and hen will work on housing… yet to hear from my account 🙁 SO things are looking up if i can survive the clean-up….

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Hello @reibur1951,

It is so good to hear from you. I'm sorry to hear of your confrontation with the dumpster. Unfortunately, the dumpster usually wins in these situations, but I'm glad that you are recovered now.

It is really good that your friend is still stable and that his immunology KEYTRUDA® (pembrolizumab) treatments are working well and he is able to tolerate them.

Wishing you well. Will you post again after the CT scan on 10/2?

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I am tired from all the clean up work… I had just came in from being in front yard all daydid nto catch the typo and internet has been down since Thursday
till late sometime yesterday afternoon and its been popping on/of and down several times completely since June phone/internet service has been absolutely the pits from centurylink this summer for some reason. Because of the neck lymph node he was taken off of the clinical studies but his Dr. is continuing with the immunology KEYTRUDA® (pembrolizumab) treatments… there may be other clinical studies down the line… he is staying with IU Medical/Simon Cancer center

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@reibur1951

I am tired from all the clean up work… I had just came in from being in front yard all daydid nto catch the typo and internet has been down since Thursday
till late sometime yesterday afternoon and its been popping on/of and down several times completely since June phone/internet service has been absolutely the pits from centurylink this summer for some reason. Because of the neck lymph node he was taken off of the clinical studies but his Dr. is continuing with the immunology KEYTRUDA® (pembrolizumab) treatments… there may be other clinical studies down the line… he is staying with IU Medical/Simon Cancer center

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@reibur1951– I bet that you are tired of all the clean up! I know that he must be feeling disappointing by being eliminated from the trial. And as you said, there might be more down the line! It really helps to have a positive attitude with cancer. There are so many new treatments being explored and being used! KEYTRUDA® is being toted as a life saver for many people and being stable is certainly a great sign. Is he sleeping and eating and drinking well now?

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