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?

@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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Hello @reibur1951

So good to read your post and update. You continue to be a very loyal friend and I pray, as does @alamogal635, that your car and finances hold up for these upcoming May treatments.

You are a good planner and definitely organized. I get the feeling that your friend's family has not thanked you for your help for this cancer survivor so on their behalf, let me say thank-you for your help.

You are providing more than transportation, you are providing hope! We need more people in our world to provide this essential element of hope.

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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– Good morning. OMG Can you believe these expenses? Is there a way that the family will compensate you for the car? Or is it theirs?
What kind of radiation are they planning? I had to have a form made for my SBRTs. Masks are often made for precision. There are so many!
I'm thinking of how incredible you are. You deserve an award. Have you had a chance to have any sort of break? Maybe for a spa day or even a pedicure?

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@merpreb

@reibur1951– Good morning. OMG Can you believe these expenses? Is there a way that the family will compensate you for the car? Or is it theirs?
What kind of radiation are they planning? I had to have a form made for my SBRTs. Masks are often made for precision. There are so many!
I'm thinking of how incredible you are. You deserve an award. Have you had a chance to have any sort of break? Maybe for a spa day or even a pedicure?

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Yes I can – NO they won't because of what his dad had me to to protect/ care for him, the son and me – son with the lung cancer does not want to go into nursing home – father did not he was not making red blood cells he died Jun 28th did not see it go through – wife/mother was in nursing home died Dec 26th it was father/son & I who cared for her went to see her. He has 2 full sisters & a step sister who can get a rats ass in hell about him – the sisters have never called to ask about him – the step sister did but her questions was "how long do they give him" ; none offered help to pay for the funerals; the youngest sister some how talked her mother into taking over her care after her dad died – all i could get out of the mother (my friend) was I did not have enough time now????? All that ran through my mind was and not said WTF – I was the one taking the father to all his drs. appointments sitting 6 to eight hours for a blood transfusion stopping to see her on way back home; goign in to see her on grocery trips, and taking the them regular dr/cardiologist visits and taking the son to Indy which started out to be every week (and the father went with us as could not leave at home alone) then done to every 3 weeks. BUT i was good enough when the mother had seizure/Acute MI to be called and go to hospital and bring the son between 1-:30 a.m. (but i later found out why the nursing home nurse insisted i be called) – she was DNR/comfort care because of all her medical problems so I was the one who sat with her ALONE 98% of the time 24/7 while she was in hospital / hospice / and back at nursing home for the 8 days.

They did not say type of radiation – may find out Thursday when go back I assume to make sure mask is right – they took him in alone this Wednesday for the fitting/simulation…

All I got to do is hang on till October when the one piece of farm land is sold and can be insured with title insurance (this was to get the father/and I out of this mobile home) & better vehicle and was to go down last fall after the "adverse possession" went through – it has everything in my name now just got to hope none throws a monkey wrench in it but if do the youngest daughter will loose her house

Been out yesterday gathering scrape I can haul off in car for extra money . as the truck is loaded down with garbage to go off to the trash hole over on the other property which the sisters husband said he would do I called its been sitting for 2 weeks now – I did get one good load with the truck before i done some clean-up here – she did offer to take the scrape off but like i told here it had to be sorted and loaded

The youngest daughters husband does come check out the car when i ask – as afraid to take it elsewhere to be worked on because of its condition – and yes I have a new/used factory warranty vehicle in mind and get rid of the car and the truck (its not in good shape either and not road worthy for long hauls)

Basically its they are pissed because father protected himself and did not live to see it – the son (who lived with his grand mother to help care for her) and me (been here since May 1994) taking care of all them… & give the youngest daughter her 5+ acres for where he house stands as the mother/grandmother would not give her the land to go with so its been sitting on the property for 20 years that's in the works the survey is made which I have to pay for besides giving them the acreage free and clear for no compensation …. the wife/son/me took care of the grandmother and in Nov. 2002 wth the father/mother we watched her die – I sat bed and held her in my arms when she wanted held… I helped delivery the one granddaughter –

The sisters both work – the one widow the other works in hospital blood lab & was an EMT; the step sister is semi-retired and loves to travel with her husband to see her and his kids… I am the fool, the scapegoat the stupid one for fully caring and being there for all of them all these years.

The youngest sister & husband (he even read the CT-scan reports while here the day checking car over and knew there was a possibility of radiation and I was taking him down for consultation and biopsy for the genomics needed extra money but they have
never called to see what is what , they never even asked us over for Easter.

Sorry for the rant. I will survive and God will provide and sorry in the end Karama will be a bitch

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@hopeful33250

Hello @reibur1951

So good to read your post and update. You continue to be a very loyal friend and I pray, as does @alamogal635, that your car and finances hold up for these upcoming May treatments.

You are a good planner and definitely organized. I get the feeling that your friend's family has not thanked you for your help for this cancer survivor so on their behalf, let me say thank-you for your help.

You are providing more than transportation, you are providing hope! We need more people in our world to provide this essential element of hope.

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I've always been what I thought was a good planner – its "black/white" sorry for the pun – its either there or not there $ and if not you do without… No the sisters/step sister has not really thanked me they are out for what they can get or feel the deserve and they have done little for there parents/grandmother the years i've been here the step-sister in my opinion has always thought she was better than all the rest. the youngest daughter has played the fiddle and made remarks about the other sister/step-sister its almost as if its a "war" between them and I am caught in the middle – below is my rant on all this

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@bluelagoon

@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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Yes they are in my mind and I can't toot my horn enough… all I wanted was the "BEST" and out of the system up here in Northern Indiana and out of the Oncology/Hematology that his father was in and I was biting my tongue – his father's dr talked in apologies; would not discuss – and it was "you take this medicine because I say so side effects be dam" he pushed medications with out talking side-effects and their effect on his A-Fib and told me outright all I gave a dam was about the $$$ and not the person – well when I seen 95-98% of the side effects of the drug; and the drug said it affected the heart rate, & he came home and slept 90-95% percent of the time only wanting to get up to go to bathroom, dr's appointments and to eat if he felt like eating. he kept "badgering" him to take the medications – badgered him into taking presdisone which sent him into instant foot edema and congestive heart failure landed him in the hospital for a week and a change of heart medication to control his A-fib which was 120-130+ NO I did not want this type of dr. for his son and the practice is scattered over all over northern Indiana with satellite office in other communities with hospitals Finally after seeing his sons treatment by drs at Simon he was wanting to go to IU Med but it was to late when I finally got him there by driving him myself – the last time had him to ER in one of our local hospitals they refused his request to be transferred to IU Med/Methodist I know the outcome probably would not of been different but he would not of been in the misery he was in he was from Nov. 2016- to his death on Jun 28th 2018 not making red blood cells tho it was implied it was not cancer but the father tested positive for JAK2 V617F mutation and this was never fully explained and clearly!

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@reibur1951

I've always been what I thought was a good planner – its "black/white" sorry for the pun – its either there or not there $ and if not you do without… No the sisters/step sister has not really thanked me they are out for what they can get or feel the deserve and they have done little for there parents/grandmother the years i've been here the step-sister in my opinion has always thought she was better than all the rest. the youngest daughter has played the fiddle and made remarks about the other sister/step-sister its almost as if its a "war" between them and I am caught in the middle – below is my rant on all this

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@reibur1951
So sorry that you get no help nor appreciation for all of your noble efforts.

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@margot69

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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Hi @margot69– I bet that you feel tired! I wish you well tomorrow. Please come back an let me know how it went! Is there anyway that you can get your onc to open up? Can you ask her why she isn't giving you the information that you need and that you have to go to another doctor for explanations?

Liked by alamogal635

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@hopeful33250

@reibur1951
So sorry that you get no help nor appreciation for all of your noble efforts.

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That's okay I did not do it for them – I done it or their mother, father and doing it for their brother. We had not choice for the mother being in nursing home she had Left carotid surgery Nov. 4 2004 – came home and started to have TIA's we took to a local ER handed them the paper work from the dr/hospital with all the #'s on it they refused to contact was told that when she had one to wait 30 minutes to an hour for it to subside – she woke up on Sunday morning as a "Zombie" finally talked her to goign back into ER – they refused to transport her back to Indy Methodist & Her dr. kept her over night for 24 hour observe was going to send her home I went behind their back (this being the 3rd ER visit after the surgery) and called the dr. direct he got orders for the transport out of local hospital but not without a fight on their part finally 6 hours later they did – on way down the ambulance speed past us at 80+ (as that was what my speed-odometer read) in trying to keep up with them… early morning she was transferred to Neuo ICU and spent 2 weeks there – we slept in waiting room on floor or long sofa, or 2 chairs pushed together she came out full right side stroke and speech, thought and comprehension affected went from 150 down to less than 130 pounds none of the daughters came down or would bring son down – we would come home late on Thursday night – to pay bills, get food in house etc. and go back…

I promised both the father and mother I would see this through and I will hell or high water – its that his needs and wants need to be respected and not shipped off to a nursing home, half-way house or whatever where they are absolved of all responsibility and they could of ran off with everything – he was the one who helped care for the grandmother and them along with me they went on with their lives, work and families with out having to be responsible for their care.

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@hopeful33250

Hello @reibur1951

So good to read your post and update. You continue to be a very loyal friend and I pray, as does @alamogal635, that your car and finances hold up for these upcoming May treatments.

You are a good planner and definitely organized. I get the feeling that your friend's family has not thanked you for your help for this cancer survivor so on their behalf, let me say thank-you for your help.

You are providing more than transportation, you are providing hope! We need more people in our world to provide this essential element of hope.

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agree with Teresa–you are doing and have done outstanding work. Blessings.

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@alamogal635

agree with Teresa–you are doing and have done outstanding work. Blessings.

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Just trying to do what I promised, whats right and fight for the adage of "Do no harm"; my mother and her sister were nurses so I do have a weird sense of values I guess.

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@reibur1951 It's not weird at all. It sounds like your family heritage gave you a great sense of values. We could all wish for a friend like you!

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@reibur1951

Just trying to do what I promised, whats right and fight for the adage of "Do no harm"; my mother and her sister were nurses so I do have a weird sense of values I guess.

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@reibur1951– Values are what guide us! It's important not to violate your own.

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@merpreb

@reibur1951– Values are what guide us! It's important not to violate your own.

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Well said, @merpreb!

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@hopeful33250

Hello @reibur1951

So good to read your post and update. You continue to be a very loyal friend and I pray, as does @alamogal635, that your car and finances hold up for these upcoming May treatments.

You are a good planner and definitely organized. I get the feeling that your friend's family has not thanked you for your help for this cancer survivor so on their behalf, let me say thank-you for your help.

You are providing more than transportation, you are providing hope! We need more people in our world to provide this essential element of hope.

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(nancy-shortshot) Hi Teresa, It has been quite a while since I have been in here. I hope that Colleen updated you. I'm really glad that she had emailed me. I have been having a tough time for the last 3/4 months. Things are still somewhat unsettled but hopefully will get better with time. Tom morrow will be the anniversary of my husband passing. I'm getting better with the grief and getting better after my fall and breaking my left hip. Time will take care of things. I will get back here more often. Thanks for caring. Nancy

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@shortshot80
Nancy
I'm so sorry to hear of your difficult time over the past few months, but I'm so glad that you are back on Connect and feeling better now. I had been concerned!
Give yourself the time you need to recover.

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