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

@margot69-I am truly sorry to hear this Margot. There's always hope. Try not to doubt this. Most likely the next step is a PET Scan and the biopsy that they postponed. I have no idea how how the radiologists staged you without a biopsy.
Can your pulmonologist pull any strings and get you an appointment sooner?
Since there has not been a discussion about Small Cell lung cancer I'm reaching out to everyone to see if someone will join us in beginning a new discussion.

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Hi Merry. I have nothing good to say about this Pulmonologist. It took me months to get him to do a CT, all I heard was to quit smoking. I kept after him so he orders it "if it will make you feel better, but probably won't show anything." After the test, was told to call his office ASAP. He ordered a PET which confirmed a spot in the left lung, nodes and 3 spots on the liver. Radiologist felt lung biopsy was too risky so decided on liver. That was a fiasco. Cancelled the first day and had to go in again. Results from that just came in on Thursday as SCLC. Niw, he is frantic Instart treatment or, he tells me, "You are going to die." I just want away from this doctor. My PCP also called in a referral to Stanford as did my ENT Doctor out there. I called but have to wait fir them to call back. Yes, would like to see some discussion from anyone going thru this and if anyone has been treated at Stanford. Thanks!!

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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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Hi, My name is OlgaMarie. I have small cell lung caner, COPD and emphysema. And I can not stop crying lately. I am not afraid of the cancer, but of the emphysema. I put on a happy mask, but at home, I am upset. My life has been challenged with PTSD, caring for a son with schizophrenia ( doing really well now), an alcoholic son and a mother with alzheimers. I did those things for almost eight years and wanted to start to live again. Then cancer. I should not complain, but I am so mad. I finally wanted to find someone to love me and this. I am 73 and I tried, but now feel shattered. I know this is pathetic when so many people are more sick than I. I just want to be serene. I started to eat healthy (than the holidays) go to the YMCA three times a week. What should I do? Thank you so, so much for being here.

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@olgamarie– Good afternoon and welcome to Mayo Connect. We have just started a group for people with small cell lung cancer so I'm going to invite @margot69, @meka,@bluelagoon to join in this discussion. I have NSCLC, which is different than SCLC. No matter what time of year, what we've done, who we take care of, what religion, color or haircut we are all shocked when we're told that we have cancer. And we all get angry because we've all been busy with various things and because we are afraid. I'm so sorry that you have such a huge family responsibility. I hope that you can get help taking care of your mother. Are your sons living with you? When were you diagnosed? Has your treatment plan been decided yet.

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My mother passed away in 2012. She was my friend, confidant and companion. I have been divorced for almost thirty years. My boys have their own places now, but I feel like I caused their problems. Yes, I was diagnosed at the end of 2016, had radiation in 2017, that is why this is crazy. I am falling apart now. I have had depression and anxiety before. I sound so weak. Maybe, this is more of an issue now because my six month appt. for Mayo is in March. And my brother is dying of emphysema and a bad heart. Sorry for complaining.

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@olgamarie

Hi, My name is OlgaMarie. I have small cell lung caner, COPD and emphysema. And I can not stop crying lately. I am not afraid of the cancer, but of the emphysema. I put on a happy mask, but at home, I am upset. My life has been challenged with PTSD, caring for a son with schizophrenia ( doing really well now), an alcoholic son and a mother with alzheimers. I did those things for almost eight years and wanted to start to live again. Then cancer. I should not complain, but I am so mad. I finally wanted to find someone to love me and this. I am 73 and I tried, but now feel shattered. I know this is pathetic when so many people are more sick than I. I just want to be serene. I started to eat healthy (than the holidays) go to the YMCA three times a week. What should I do? Thank you so, so much for being here.

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@olgamarie, I'd like to add my welcome. There is a saying in German "I'm feeling close to water" which is the feeling of always being on the verge of tears. I can imagine that you find yourself crying at the drop of a hat with all that you have to contend with. There are several discussion groups here on Connect where you can meet people like you. Let's start with these:

For Small Cell Lung Cancer, join others here:
> Small Cell Lung Cancer https://connect.mayoclinic.org/discussion/small-cell-lung-cancer-1/

To talk about managing COPD and emphysema, check out the Lung Health group (https://connect.mayoclinic.org/group/lung-conditions/) specifically these discussions:
> Just Diagnosed Emphysema https://connect.mayoclinic.org/discussion/just-diagnosed-emphysema/
> Severe COPD and Interstitial Lung Disease https://connect.mayoclinic.org/discussion/interstitial-lung-disease-severe-copd/

There are more, but let's get you started with these.

You have every right to be upset and mad. Connect is a good place to vent without judgement. Good for you for adopting healthy habits. It is a good step forward and helps take back control.

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@olgamarie Prayers put your faith in God… take one day at a time is all i can tell you… I have cared for an 84 yr old man not making red blood cells who died Jun 28th and then on dec 26th his wife who has been in nursing home for 14 years died of an Acute Myocardial Infraction near if not 100% blockage doing catherization was out because of multiple health issues she was put on comfort care soon after her trip into ER on Dec 19th ended on medical floor for couple of hours transferred same day to hospice for pain management only stayed there till Sat but in my opinion should of never been moved back to the nursing home – the hour+ trip was total misery for her I rode with her and listen to her moan and basically scream she was still in misery for 4-6 hours after arriving back wand was full of morphine… their son was diagnosed with Stage 4b lung cancer – his father & I knew the results before he was even out of the biopsy & I Had to go tell he mother who was full right side stroke – how much she comprehended I do not know because a week earlier she asked me what was exactly wrong with Russ and I had been explaining telling her everything for 2 years! he is in clinical study at IU Medical/Simon Cancer center – 12 weeks of chemo 2 chemo's first week with immunology, abraxane (Sp) the next 2 weeks – ct-scan every 3 weeks (DEc-April) I even landed in a ditch ass backwards on Jan 12th last year leaving out of here in rain/slet with roads slush and Ice – the Ices storm of 2018 that went as far down into Tennessee or further that day…. the son is doing great no reactions or adverse effects for the chemo & immunology, some nausea, vomiting, etc. very little hair loss in fact it came back in thicker, some nuropathoy (sp) only to up to basically base of where foot meets ankle, He thinks is is "Super man" he has taken out on he bicycle to ride to delong and back roughly 10 miles one way it is -1 with wind chill of -15 he has tired the last 2 days and not gotten far…. I cancelled out his immunology on Monday because roads were snow covered and drifting from west to east and we would be coming home after dark was scheduled for tomorrow but i canceled out I am exhausted trying to keep our only heat going – wood stove – which he packed so tight it could not burn and blamed it on the wood; kitchen water both hot/cold froze so far bathroom is not …. we are in Northern Indiana and it has been brutal…. but i think we have survived it… there has to be better days ahead and I know God will provide….

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@olgamarie

My mother passed away in 2012. She was my friend, confidant and companion. I have been divorced for almost thirty years. My boys have their own places now, but I feel like I caused their problems. Yes, I was diagnosed at the end of 2016, had radiation in 2017, that is why this is crazy. I am falling apart now. I have had depression and anxiety before. I sound so weak. Maybe, this is more of an issue now because my six month appt. for Mayo is in March. And my brother is dying of emphysema and a bad heart. Sorry for complaining.

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@@olgamarie– This is not crazy. Present life situations can cause emotional playbacks. I'm so so sorry that your brother is dying. Are you able to spend time with him? Is he in hospice?
All we can do when we have children is guide them through life. If they make bad decisions and act accordingly those are their choices. I haven't the slightest idea why, as parents, we feel responsible for an adult child's behavior. Some are abusive, others are just timid about getting on with life. And sometimes, without realizing it we enable bad behavior toward us.
Stop enabling> https://www.psychologytoday.com/us/blog/liking-the-child-you-love/201404/stop-enabling-your-overly-dependent-adult-child
There is another group on Mayo that you might like to visit. You can make your journey with these people.
The Journey of grieving>https://connect.mayoclinic.org/discussion/the-journey-of-grieving/?utm_campaign=search

PS- I have my followup CT scan in a week! Talk about anxiety!

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Hi all,
Today's member spotlight features a prominent member of the Lung Cancer group. Some of you know @merpreb. And for those of you who don't yet, read Merry's interview with fellow member John Bishop to find out what surprised her about Connect and how she finds balance in life. Puppies or kittens?

– A Survivor: Meet @merpreb https://connect.mayoclinic.org/page/about-connect/newsfeed/a-survivor-meet-merpreb/

Check out all the Member Spotlights here https://connect.mayoclinic.org/page/about-connect/tab/newsfeed/

Who would you nominate for a future Connect member spotlight?

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Update – Friend back on Dr. visit Jan 7th before 6 week ct-scan (Jan 24th) told dr that the lymph node was hurting and was somewhat swollen the ct showed nothing we missed the Jan 28 dr/immunology I started out but got only mile from home turned around – road was snow packed – could not see but very little of the yellow line occasionally and it was drifting across the road from west to east on North/South road… was rescheduled for Feb 1 but water was still frozen and was single digit temps with negative wind chill so cancelled out (guess I am a total chicken) – but as have a dachshund & a newly acquired Siamese kitten who would be home alone and house temp was in the mid to low 40's with the wood stove (only heat) and the wind seems to go right through this 1975 mobile home being a PIA so cancelled out and weather was to be iffy also

We made it today (Feb 4th) – CT scan showed no major changes – but he was still complaining of the lymph node and its more swollen – not sure why it did not show on the CT unless not high enough was able to have the immunology – after checking all angles with the clinical study they were able to have immunology and also was able to schedule a neck ct- and was able to get it done today after immunology across town at I U Methodist was half hour late but they took him anyway immunology you get there at your appointed time and wait 1-2 hours for the mediation to arrive we took out of I U Med/Simon Cancer at the appointed time of the CT appointment across town.. left Indy at rush hour 5 p.m and it was misting rain and foggy…

He was scheduled to see ENT Dr. (Feb 7th) – had a Fiberoptic laryngoscopy (nasolaryngoscopy) it showed no complications /tumors on the inside of the throat & neck area. The swelling/ growth is a part of the lung cancer being treated this lymph node had shrunk but started to show symptoms again so its a step backwards – was taken off the the original clinical study he was on (Dec 2017-Feb 4th) BUT he got put into another – there will be chemo & Immunology together as before but only i chemo drug – Docetaxel (Taxotere) and Pemrolizumab which he has been getting 1st in combo with 2 chemo drugs and then since April alone – all other areas are stabilized or its just the Supraclavicular lymph node acting up for now The neck ct showed nothing new – have not seen the report as yet Blood test were done to get the stud under way – will have to go back for a biopsy of the lymph node which as asked but do not have to have really but suggested trying to stay positive and hope he does as well as he did on the other chemo – no real side effects except losing a little hair and some neuropathy in the feet…

Love IU SImon Cancer center they don't drag their feet ad they are up front….

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You certainly have your challenges. The weather in the U.P. of Michigan has also been a struggle with rain, ice snow, sleet and -43 chill factors. And a lot of us do not brave the elements. I am sorry that the present diagnosis was such. He sounds like a fighter and a positive attitude affects any disease or illness. I hope your journey is a good one. Blessings

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@olgamarie

You certainly have your challenges. The weather in the U.P. of Michigan has also been a struggle with rain, ice snow, sleet and -43 chill factors. And a lot of us do not brave the elements. I am sorry that the present diagnosis was such. He sounds like a fighter and a positive attitude affects any disease or illness. I hope your journey is a good one. Blessings

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The main tumor in lung and the rest of the lymph nodes one in the left arm pit and chest are are all stable and not growing… just that with the Supraclavicular lymph node acting up for now kicks him out of the original clinical study – he was done to the he went through the 1st 12 weeks week 1 was carboplatin, nab-Paclitaxel/abraxane (both chemos) & Pemrolizumab (immunology) and weeks 2 & 3 nab-Paclitaxel/abraxane (chemo) only with flying colors so to speak no adverse reactions to the drugs, very little hair loss (in fact grew back thicker), and only a little neuropathy in his feet reaching only to about the base of ankles in other words one who others would be very envious of or would like to "punch his lights out" did not have to take any of the 3 bottles of extra medication for nausea & vomiting prescribed; no diarrhea, loss of appetite etc. At least he gets to be in what the call Phase II

Yes we had much the same type weather… I had a nice warm water bed and that where I stayed most of the time in front f the bedroom tv, laptop and smartphone by my side… was diagnosed in Oct 2017 in fact we know before he was out of the biopsy of the lung that he had cancer there was PET scan etc and by Dec 15th he started his treatment… think we were in Indy every week or every other week in between Oct-Dec before we started the 12 week trips till nid April – only missing 3 sessions (delays) one we landed in the ditch on Jan 12th it was a rain/sleet weather with probably 2-3" or more on the highways before the snowplows was out – after getting out we headed home – the other 2 was because his immune count was down and they would not do the treatments (the "Do no harm") … besides that we have made it through the death of his father on June 29th 2018 (he was not making enough red blood cells & having transfusions every 2 weeks) & his mother who died Dec 28th – of Acute Myocardial Infraction, near 100% blockage, sepsis, c-diff, Stage 3 Acute Onset Kidney disease beside her full right side stroke which she had been in nursing home since Dec 3, 2004 I sat with her and watched her die slowly from Dec 19-26 24/7 all but for about 3 hours she was comfort care only as was DNR no advance life sustaining support and if the did surgery to alivate blockage she would of possible not made it or done more damage than good

Just have to hope for the best and he does as well as he did on the first round but with only one chemo he should and it is to be similar to the nab-Paclitaxel/abraxane

How are you coming along @olgamarie ?

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Hi everyone. My name is Liz. I have nsclc. It’s coming up to 3 years. My oncologist originally told me I had 6 months to live. Haha!’ I am in between trials. Waiting for Mayo to review my medical history and hopefully find me a trial. Look forward to chatting

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@reibur1951

The main tumor in lung and the rest of the lymph nodes one in the left arm pit and chest are are all stable and not growing… just that with the Supraclavicular lymph node acting up for now kicks him out of the original clinical study – he was done to the he went through the 1st 12 weeks week 1 was carboplatin, nab-Paclitaxel/abraxane (both chemos) & Pemrolizumab (immunology) and weeks 2 & 3 nab-Paclitaxel/abraxane (chemo) only with flying colors so to speak no adverse reactions to the drugs, very little hair loss (in fact grew back thicker), and only a little neuropathy in his feet reaching only to about the base of ankles in other words one who others would be very envious of or would like to "punch his lights out" did not have to take any of the 3 bottles of extra medication for nausea & vomiting prescribed; no diarrhea, loss of appetite etc. At least he gets to be in what the call Phase II

Yes we had much the same type weather… I had a nice warm water bed and that where I stayed most of the time in front f the bedroom tv, laptop and smartphone by my side… was diagnosed in Oct 2017 in fact we know before he was out of the biopsy of the lung that he had cancer there was PET scan etc and by Dec 15th he started his treatment… think we were in Indy every week or every other week in between Oct-Dec before we started the 12 week trips till nid April – only missing 3 sessions (delays) one we landed in the ditch on Jan 12th it was a rain/sleet weather with probably 2-3" or more on the highways before the snowplows was out – after getting out we headed home – the other 2 was because his immune count was down and they would not do the treatments (the "Do no harm") … besides that we have made it through the death of his father on June 29th 2018 (he was not making enough red blood cells & having transfusions every 2 weeks) & his mother who died Dec 28th – of Acute Myocardial Infraction, near 100% blockage, sepsis, c-diff, Stage 3 Acute Onset Kidney disease beside her full right side stroke which she had been in nursing home since Dec 3, 2004 I sat with her and watched her die slowly from Dec 19-26 24/7 all but for about 3 hours she was comfort care only as was DNR no advance life sustaining support and if the did surgery to alivate blockage she would of possible not made it or done more damage than good

Just have to hope for the best and he does as well as he did on the first round but with only one chemo he should and it is to be similar to the nab-Paclitaxel/abraxane

How are you coming along @olgamarie ?

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Wow. You are amazing!! What a book of lessons you have. Everyone says “keep fighting “. I think we all just say “keep living”. Good luck!

Liked by bluelagoon

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Welcome @lizdorn . You've come to the right group so I'm glad that you found us. Have you been operated on or had a biopsy done? I'm a stage 4 NSCLC too and have faked my doctors out for 21 years! Doncha love it!

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21 years?? Wow. If that doesn’t give all of us NSCLC hope I don’t know what would. When I started the chemo in 3-16 I had everything done. In January of 2018 my oncologist said that she has run out of treatments for me and that should except this and go do my bucket list. Well you know what I wanted to do with that bucket. Anyways I call the National Institute of Health in Bethesda Maryland and was able to get in on a trial. At my 7th treatment my team of doctors told me that the 2 large tumor on the right side had decreased by over 60% but there are 3 little ones that were continually getting bigger. So of that trial. I live in Wisconsin. To make that trip every 28 days of 11 hours, needless to say I searched for someplace closer. I am in the beginning steps to see if Mayo can help me.
Wow. 21 years. That is fu””omg awesome

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