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

Last day of radiation – have been home between 3-5 each day of the 10 days – gave 4 hours travelling time with the construction work along the way there was a couple days they moved appointment up from 2 – to 1 & 1:40 of course we made time and arrived early think there was only one time had to wait very long most generally we were in and out before the scheduled time they are the greatest. done it for gas/snacks and a meal only 3 days did not stop for sandwich/meal the one day before i splurged stopped for Kentucky Fried Chicken family meal so there was plenty of leftovers for the next day – other 2 days said he did not want to stop done it for $495.18 – just the room board for the dog & cat and motel room for us these day days would of been $1933.10 not sure if we would of have to pay for transit while there or not; the valet parking was validated for all visits including initial dr visit too. Not sure if have helped still visibly swollen go back to radiologist on the 17th – his reg dr/labs/immunology next Friday still awaiting the Genomic reports… Amazingly it went very well except for a close encounter with a deer last week and this week… of course the Indy traffic but that's becoming old hat now.. started this journey in Oct 2017 (started with only an initial chest x-ray to see why was coughing so much then they ordered a ct which had to wait a week plus for results at local hospital in Sept – when family dr. only comment result was Thoracic surgeon & biopsy I said IU Medical center tried to get us to go locally but stuck to my guns not been sorry its been well worth all the travel time) God will only how much longer

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Genomic testing in this was the message "All results from genomic testing were reviewed at the tumor board and unfortunately there were no recommendations that could be given based on those results. Also, no germline or hereditary link was found." Have been sent to his regular doctor so will see Friday what he says at this point not sure what to make of it – and what questions there is to ask if any – Maybe I am wrong but I still think it should of been the neck lymph node tested and not the axillary which has responded to treatment and stayed stable thus far.

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@reibur1951

Genomic testing in this was the message "All results from genomic testing were reviewed at the tumor board and unfortunately there were no recommendations that could be given based on those results. Also, no germline or hereditary link was found." Have been sent to his regular doctor so will see Friday what he says at this point not sure what to make of it – and what questions there is to ask if any – Maybe I am wrong but I still think it should of been the neck lymph node tested and not the axillary which has responded to treatment and stayed stable thus far.

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Hello @reibur1951

I'm sure it must have been disappointing to not have any new recommendations based on the genomic testing. It does leave more questions than answers and that is frustrating, to say the least.

I think your question about the neck lymph node is a valid one. I would certainly bring it up when you see his regular doctor.

I hope you have a productive appointment on Friday. Will you provide an update after your appointment?

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I will at least will be able to have immunology been well over a month since the last infusion – but for some reason said no to it while having the radiation – that lad/dr/infusion was to be 29th of Apr. – radiologist not till 17th I know he had been holding/carrying his right arm differently for well over a month now – so the swollen neck lymph node is affecting the main nerve in the arm…

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@reibur1951

I will at least will be able to have immunology been well over a month since the last infusion – but for some reason said no to it while having the radiation – that lad/dr/infusion was to be 29th of Apr. – radiologist not till 17th I know he had been holding/carrying his right arm differently for well over a month now – so the swollen neck lymph node is affecting the main nerve in the arm…

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You are quite diligent in looking at this situation, @reibur1951. If the lymph nodes are affecting the nerve in the arm, it seems reasonable that it should be mentioned to the doctor and asked what could be done about it. I wish you well as you seek the best medical treatment.

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I have been watching since the radiologist visit… Its just one lymph node at the shoulder/neck supraclavical the term used in the ct scan reports.. we shall see what the regular oncologist has to say the radiologist has not been as informative as regular dr. but he & colleagues did notice the weakness in that arm Know it has been painful to him since January but he is not a complainer so i have been trying to take notice more of how he holds it etc. maybe I am overreacting

Liked by bluelagoon

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@colleenyoung

Thanks for the additional information @burrkay. So grateful your oncologist persisted and found the molecular root cause. I’ll be thinking about you and your wife on Monday. Please update us when you can.

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(shortshot Nancy) Hi Colleen, I have been not feeling so sharp for the last couple weeks, nothing with the lung cancer, just don't know what, but am getting somewhat better. I tried to log in and they don't know my email address again. I must have upset the "emil god" any
way here I am. I had a cat scan and saw my doc's and I have to go back in three weeks for another blood test, then wait for six weeks for another cat scan. The last scan showed that my lung cancer had shrunk some and a couple of nodules had disappeared. So that's a good thing. So I have been working some on my book. Hopefully I will get it finished soon. Thanks Colleen for all your help. Nancy Bush
This also to Teresa (hopeful) Nancy

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@shortshot80

(shortshot Nancy) Hi Colleen, I have been not feeling so sharp for the last couple weeks, nothing with the lung cancer, just don't know what, but am getting somewhat better. I tried to log in and they don't know my email address again. I must have upset the "emil god" any
way here I am. I had a cat scan and saw my doc's and I have to go back in three weeks for another blood test, then wait for six weeks for another cat scan. The last scan showed that my lung cancer had shrunk some and a couple of nodules had disappeared. So that's a good thing. So I have been working some on my book. Hopefully I will get it finished soon. Thanks Colleen for all your help. Nancy Bush
This also to Teresa (hopeful) Nancy

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@shortshot80 Hi Nancy

I'm so glad that you are back with us on Connect! The results of your last scan sound great. I'm excited to learn that you are still working on your book. I hope you begin to get back your energy. You've been through a lot with your broken hip and it does take a while to bounce back.
Wishing you well. Hope to hear from you again soon!

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@hopeful33250

@shortshot80 Hi Nancy

I'm so glad that you are back with us on Connect! The results of your last scan sound great. I'm excited to learn that you are still working on your book. I hope you begin to get back your energy. You've been through a lot with your broken hip and it does take a while to bounce back.
Wishing you well. Hope to hear from you again soon!

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@shortshot80 So good to hear from you Nancy and that you were able to logon to Connect. Sorry that you haven't been feeling well. I hope that the spring weather will help some.

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@reibur1951

I have been watching since the radiologist visit… Its just one lymph node at the shoulder/neck supraclavical the term used in the ct scan reports.. we shall see what the regular oncologist has to say the radiologist has not been as informative as regular dr. but he & colleagues did notice the weakness in that arm Know it has been painful to him since January but he is not a complainer so i have been trying to take notice more of how he holds it etc. maybe I am overreacting

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No options for other treatments as of now – the genomic testing favorable with the Prembo KEYTRUDA® (pembrolizumab) so will continue on it till it no longer works – scans after 1 or 2 more infusions to see where stand and see if lymph node goes down any ; the neck lymph node still very noticeably swollen – arm bothering me – offer of pain med – but he has opted not to take for now – yesterday was a test of patience – everything was running 1 hour + behind – was there on time for the labs at 12:15 – dr. was to be at 12:45 did not get into to dr. till 1:30 and sat there till after 2 p.m before seen and a resident/intern 1st then reg. dr. checked out at 14:51 by summary sheet (2:51) was scheduled to be infusion at 1:45 p.m. so did not get out of there till 5 came straight home he did n ot want to stop get something to eat so rolled in about 7:30 did stop finally to get something cold to drink within 50 miles of home besides our lukewarm coffee… the wind was up so driving was a strain along with a vibration in the steering wheel means a call to the brother-in-law – labs/dr/infusion on 14th and radiologist on the 17th. Has put him on the list for any studies he might fit into – There is one other drug but he says more wicked side effects and as long as the prembo is working and he has had no side effects to speak of and this one
requires 2 treatments in the 3 week period

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@reibur1951

No options for other treatments as of now – the genomic testing favorable with the Prembo KEYTRUDA® (pembrolizumab) so will continue on it till it no longer works – scans after 1 or 2 more infusions to see where stand and see if lymph node goes down any ; the neck lymph node still very noticeably swollen – arm bothering me – offer of pain med – but he has opted not to take for now – yesterday was a test of patience – everything was running 1 hour + behind – was there on time for the labs at 12:15 – dr. was to be at 12:45 did not get into to dr. till 1:30 and sat there till after 2 p.m before seen and a resident/intern 1st then reg. dr. checked out at 14:51 by summary sheet (2:51) was scheduled to be infusion at 1:45 p.m. so did not get out of there till 5 came straight home he did n ot want to stop get something to eat so rolled in about 7:30 did stop finally to get something cold to drink within 50 miles of home besides our lukewarm coffee… the wind was up so driving was a strain along with a vibration in the steering wheel means a call to the brother-in-law – labs/dr/infusion on 14th and radiologist on the 17th. Has put him on the list for any studies he might fit into – There is one other drug but he says more wicked side effects and as long as the prembo is working and he has had no side effects to speak of and this one
requires 2 treatments in the 3 week period

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@reibur1951 You certainly had a long day! I appreciate the update. It sounds like he made a good decision to stay with the current med that does not have serious side effects. Keep posting and let me know how he (and you) are doing. It sounds like your vehicle is still holding up, that is good news.

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@reibur1951

I have been watching since the radiologist visit… Its just one lymph node at the shoulder/neck supraclavical the term used in the ct scan reports.. we shall see what the regular oncologist has to say the radiologist has not been as informative as regular dr. but he & colleagues did notice the weakness in that arm Know it has been painful to him since January but he is not a complainer so i have been trying to take notice more of how he holds it etc. maybe I am overreacting

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I don't think you are overreacting, @reibur1951. You are simply observant as well as caring! Good qualities in a friend.

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@hopeful33250

@reibur1951 You certainly had a long day! I appreciate the update. It sounds like he made a good decision to stay with the current med that does not have serious side effects. Keep posting and let me know how he (and you) are doing. It sounds like your vehicle is still holding up, that is good news.

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I will – Yes thus far vehicle has held up thus far its developed a vibration but with all the potholes (sometimes a solid row) or you jog to miss and still hit because its a whopper in width and 6+ inches deep and now the milling of the roads for re-paving it will be a toss-up… so far safer from all the high winds and Tornadoes in our general area… areas to the north and east and east have been hit really bad… have had the high winds but no tree damage so far but the ground is beyond soggy…

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Hi @reibur1951,

Just thinking about you and wondering how you are doing and how your friend is doing with his cancer treatment. Has your friend had any more of the Prembo KEYTRUDA® treatments?

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Yes he had one May 24th; Friday – seen radiologist yesterday says it got smaller but did not say by how much. Does not see radiologist for 6 months Dec. 17. Ct-Scans Neck & Chest to catch all on Jul 1st and then on July 5th Labs/Dr/ I assume infusion tho not scheduled as he want to keep him on the Prembo KEYTRUDA® treatments for now the clinical was paying for them but since kicked off of it till another clinical is found if ever…. but he intendes to keep him on it as long as it is working the scans Jul 1st should tells us that if working he only missed one Prembo KEYTRUDA® treatment since Dec. 2017 he got it along with the 2 treatments of chemo Feb. Mar.

Me last week was rough woke up with should bothering me and could not lift move it most of week because was so sore – finally was able to get it above on my head and right palm on left ear lat Friday night after got home… still sore not sure what caused it go t idea i done to much on computer cleaning up files….

Survey went through for dividing off 5a to the sister but had to have variance it passed on Wed. last week; now awaiting to hear back from appraiser as to when he can do that so maybe things are on the right track…. all that will be left there is to have deeds made splitting the property- – and deeding off the 5a

Van still holding out but has vibration in it out of alignment thanks to the wonderful Indiana roads, tires are wearing and trying to hang on till October…. putting feelers out since that date is getting close

Just wish this rain would stop.

Got the Billing from IU the Infusion is $26 thousand plus (it was paid for by the clinical study) does not include the dr. & labs…. the radiation drs. and all so far is $83 thousand plus all pending the insurance. to think that the combined is a cost of a mediocre house! has hit $583 thousand so far for the about 1 1 /2 year that's a shack on Lake Maxinkuckee did not see any billing for the Genomic testing tho it probably is not billed by IU that only have suite in the Simon Cancer center i assuming

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@reibur1951

Yes he had one May 24th; Friday – seen radiologist yesterday says it got smaller but did not say by how much. Does not see radiologist for 6 months Dec. 17. Ct-Scans Neck & Chest to catch all on Jul 1st and then on July 5th Labs/Dr/ I assume infusion tho not scheduled as he want to keep him on the Prembo KEYTRUDA® treatments for now the clinical was paying for them but since kicked off of it till another clinical is found if ever…. but he intendes to keep him on it as long as it is working the scans Jul 1st should tells us that if working he only missed one Prembo KEYTRUDA® treatment since Dec. 2017 he got it along with the 2 treatments of chemo Feb. Mar.

Me last week was rough woke up with should bothering me and could not lift move it most of week because was so sore – finally was able to get it above on my head and right palm on left ear lat Friday night after got home… still sore not sure what caused it go t idea i done to much on computer cleaning up files….

Survey went through for dividing off 5a to the sister but had to have variance it passed on Wed. last week; now awaiting to hear back from appraiser as to when he can do that so maybe things are on the right track…. all that will be left there is to have deeds made splitting the property- – and deeding off the 5a

Van still holding out but has vibration in it out of alignment thanks to the wonderful Indiana roads, tires are wearing and trying to hang on till October…. putting feelers out since that date is getting close

Just wish this rain would stop.

Got the Billing from IU the Infusion is $26 thousand plus (it was paid for by the clinical study) does not include the dr. & labs…. the radiation drs. and all so far is $83 thousand plus all pending the insurance. to think that the combined is a cost of a mediocre house! has hit $583 thousand so far for the about 1 1 /2 year that's a shack on Lake Maxinkuckee did not see any billing for the Genomic testing tho it probably is not billed by IU that only have suite in the Simon Cancer center i assuming

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@reibur1951

I so appreciate the time you took to provide updates for your friend's treatment as well as how you are doing. You are just doing a remarkable job juggling so many activities!

It really is incredible to consider the cost of medical care. The figures you provided were a real eye-opener. Wishing you well with the property division. I hope all goes reasonably well with the family members, etc.

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