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

@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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cindylb- Oh not again! Just incredible. I can only imagine the frustration you are both feeling. But there is good news. How is he feeling physically?

Liked by cindylb, alamogal635

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Many of you know her as @merpreb or Merry, Volunteer Mentor. To survive lung cancer (twice) is one thing, but to live through it, to share your experience and support others, is another. Read about Merry’s journey with multifocal adenocarcinoma of the lung, on Mayo Clinic’s Social Media Network (MCSMN) blog, "Experts by Experience."

– Stopped in My Tracks – Experts by Experience https://socialmedia.mayoclinic.org/2019/04/19/stopped-in-my-tracks-experts-by-experience/

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@kanaazpereira

Many of you know her as @merpreb or Merry, Volunteer Mentor. To survive lung cancer (twice) is one thing, but to live through it, to share your experience and support others, is another. Read about Merry’s journey with multifocal adenocarcinoma of the lung, on Mayo Clinic’s Social Media Network (MCSMN) blog, "Experts by Experience."

– Stopped in My Tracks – Experts by Experience https://socialmedia.mayoclinic.org/2019/04/19/stopped-in-my-tracks-experts-by-experience/

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@kanaazpereira– Thank you.

Liked by alamogal635

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@merpreb

cindylb- Oh not again! Just incredible. I can only imagine the frustration you are both feeling. But there is good news. How is he feeling physically?

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Hello Merry!
On we go I guess. It's good news, so he's a little less depressed and that's great. Physically he has some new symptoms but they don't attribute them to the cancer (although the fatigue certainly may be). I'm off to pick up antibiotics for the chest pain (he does have COPD as well) and a stronger heartburn medication. They had thought it could be cancer of the esophagus at one point but have ruled that out, so it's GERD or similar. He doesn't exhibit any symptoms of lung cancer in particular. Weirdest cancer ever. I'm hoping it will just go away (who doesn't hope that with cancer?) Hugs to you……..

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@merpreb

@lizdorn – Good morning. It must be very very upsetting to hear that you have to pack up your bag for your next life from a doctor. Have you been told that you have Multifocal adenocarcinoma? It means many nodules at once. I'm glad that you are trying to get into see a doctor at Mayo Clinic. When you said that you had everything done are you including surgery? How are you feeling?

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@lizdorn – Good morning. I haven't heard from you in quite a while and am wondering how you are doing. You were also weaning off of Zanax if my memory serves me, how is that going? We have some great discussions going with new lung cancer patients and if you are feeling up to it please join us. 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 know that you turned down traditional treatments I would like to know how you are feeling. Have you needed to have any more tests done since February?

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@merpreb

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

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@margot69– Good morning Margot. How is chemo going? I just wanted to tough base to see how you are feeling.

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@merpreb

@margot69– Good morning Margot. How is chemo going? I just wanted to tough base to see how you are feeling.

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Hi Merry,
Nice of you to think of me. Admittedly, have only scanned the Boards as little information was being addressed regarding LCNELC. Unfortunately, there are few, good Oncologists hete but I did go to see Dr. Wakelee at Stanford and made an appt to see her again this Monday. She is, technically, not my treating physician, but has been great answering some of my questions. I just finished my 4th round of Chemo (Carbo/Etroposide), followed by 5 days of Granix shots. Treatments seem to be a bit rougher each time. After the first 2 rounds, a PET scan was done which shiwed some shrinkage and no new spots. I have a repeat PET on 4/27. I have been told this Chemo will only help for so long and I started them in January. The Onc here is not good about discussing things so I want to go back to Stanford. Myself, friends and family cannot find many options for treatment. I was told, because she feels I have an underlying immune problem, immunotherapy might be risky for me. Add my age, and I might not qualify for any trials. Truthfully, trying those drugs scares the hell out of me as my body does not to,erate drugs well. Between Chemo treatments, dealing with low WBC and RBC, feeling sick, I think I have maybe one week a month I can try to function. We seldom go anywhere. Just a bit down lately. My cough is wirse and fatigue is catching up with me. Just hoping this Chemo is still holding things at bay. After 3 different diagnosis, I hope they got it right. Thanks again and hope you are doing well!!

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@margot69

Saw my dictir this morning. My Neutrophols are only .8! He us skipping Chemo this week, will recheck blood work on Tuesday, Chemo next week for 3 days the 5 days of Granix injections. Going to try and schedule me to get a port put in (shudder) then a PET scan. I was going to ask him how he thought I was doing but guess he can't answer that until after the scan. Asked him about the pains I am getting and he didn't know why. Had pain in my cgest and by my left arm pit this morning. Hard to believe he has done this fir so many years and has no answers. To,d him I found a couple of posts where people with this LCNELC are also getting Keytruda or Opvido but he says that is immunotherapy and he and Wakelee are wary of trying that on me because, this undiagnosed, they are sure I have some immune probkems going on since before this cancer diagnosis. Guess it is a wait and see. Wish he were more talkative.

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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.

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@reibur1951

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.

Jump to this post

Update – Biospy -& that it was consistent with his lung primary sent to Nantomics which was the goal of Precision Genomics 5-6 weeks for results; they said the LT Axilla Lymph node was okay to do even tho it is RT supraclavicular neck lymph node that is the problem this still mystifies me since its not the one responding to the treatments had so far and the LT Axilla Lymph node has responded and remained stable and not started to re-grow like the RT supraclavicular neck lymph node

the radiation making mask/simulation was yesterday back on May 1 for whatever and then treatments begin for 10 days on May 5-10; 13-17. Drs appointment/infusion canceld for 29th because of radiation and re-scheduled for May 24th Dr. / Infusion of Prembro / KEYTRUDA® (pembrolizumab) There will be an appointment somethine in June for the Genomics.

Going to try to do a daily trip as motel room & boarding the dog & cat will be 967 not counting a meal a day – for a week – can do a daily trip gas/meal/valet parking for 453 and if works out like yesterday the valet parking is "validated" so give $50 to play on SO far no help on expenses has been offered there was offer for finding motel room but the options they had could not bring the dog (dachshund) and cat (siamese) with us…. So $ wise its cheaper to make daily trips….

Only concern is the car but it goes to pot in hand basket no loss for what paid for and whats wrong with and friends father being lied to about the condition we more than got our use out & what we paid for it
besides having to withing first week of have to buy a battery & alternator & then the brakes & left rotor & drum and
Medically its made
41 trips to Plymouth (53 miles round trip)
12 trips to Culver (20 miles round trip)
1 tp South Bend/Mishakawa (100 miles round trip)
55 to Indianapolis (200 miles round trip)
besides all the local trips for Grocery and shopping.

Just praying that the car and me can out last the month of May and really the car has to hold on till after October…

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@reibur1951

Update – Biospy -& that it was consistent with his lung primary sent to Nantomics which was the goal of Precision Genomics 5-6 weeks for results; they said the LT Axilla Lymph node was okay to do even tho it is RT supraclavicular neck lymph node that is the problem this still mystifies me since its not the one responding to the treatments had so far and the LT Axilla Lymph node has responded and remained stable and not started to re-grow like the RT supraclavicular neck lymph node

the radiation making mask/simulation was yesterday back on May 1 for whatever and then treatments begin for 10 days on May 5-10; 13-17. Drs appointment/infusion canceld for 29th because of radiation and re-scheduled for May 24th Dr. / Infusion of Prembro / KEYTRUDA® (pembrolizumab) There will be an appointment somethine in June for the Genomics.

Going to try to do a daily trip as motel room & boarding the dog & cat will be 967 not counting a meal a day – for a week – can do a daily trip gas/meal/valet parking for 453 and if works out like yesterday the valet parking is "validated" so give $50 to play on SO far no help on expenses has been offered there was offer for finding motel room but the options they had could not bring the dog (dachshund) and cat (siamese) with us…. So $ wise its cheaper to make daily trips….

Only concern is the car but it goes to pot in hand basket no loss for what paid for and whats wrong with and friends father being lied to about the condition we more than got our use out & what we paid for it
besides having to withing first week of have to buy a battery & alternator & then the brakes & left rotor & drum and
Medically its made
41 trips to Plymouth (53 miles round trip)
12 trips to Culver (20 miles round trip)
1 tp South Bend/Mishakawa (100 miles round trip)
55 to Indianapolis (200 miles round trip)
besides all the local trips for Grocery and shopping.

Just praying that the car and me can out last the month of May and really the car has to hold on till after October…

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@reibur1951 Will be praying with you about the car holding up. Glad you have things organized, but gosh it all sounds expensive–not that it is all not worth it! You have a long haul to get all this done. Take it one thing at a time and it won't seem so overwhelming. I will be thinking good thoughts your way along with prayers. Keep us posted.

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@alamogal635

@reibur1951 Will be praying with you about the car holding up. Glad you have things organized, but gosh it all sounds expensive–not that it is all not worth it! You have a long haul to get all this done. Take it one thing at a time and it won't seem so overwhelming. I will be thinking good thoughts your way along with prayers. Keep us posted.

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Yes – either way is a lot of money – but I started him at I U Medical/Simon Cancer Center and have no regrets – his father was with a group at Plymouth and the dr. talked in analogies, would not explain, and it was "take this medicine because I say, side effects be dam" they are so up-front, answer any and all stupid questions and its these are the side effects… these are the possible benefits… it makes all those trips to Indy and money spent well worth it plus i don't have to bite my tongue and not say what i think nor does he makes a very big difference…

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Sounds like you've made a great choice then. It IS worth he money. I think by and large doctors these days have learned that we–patients in all areas–are people and not just bodies to treat, hence their more humane approach. I am glad he is where he is and you feel good about it. I will keep you both in my thoughts and prayers.

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@reibur1951 @alamogal635 The other thing about IU Simon- when I was doing my homework last year they came up as the best in Indiana. Kinda makes you think that that they, like Mayo, may give more honest answers because they have more confidence in what they are doing! (I hadn't made that connection before but it really jumped out at me here.)

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