Good Bro

Brother passed away at 4:30pm on January 12th.  Hardest thing I have ever been through, being at his bedside watching him transition.  😢 

Brother passed away at 4:30pm on January 12th.  Hardest thing I have ever been through, being at his bedside watching him transition.  😢 

Brother passed away at 4:30pm on January 12th.  Hardest thing I have ever been through, being at his bedside watching him transition.  😢 

Brother passed away at 4:30pm on January 12th.  Hardest thing I have ever been through, being at his bedside watching him transition.  😢 

Brother passed away at 4:30pm on January 12th.  Hardest thing I have ever been through, being at his bedside watching him transition.  😢 

Brother passed away at 4:30pm on January 12th.  Hardest thing I have ever been through, being at his bedside watching him transition.  😢 

Thought I'd give an update... so, my brother improved enough that the docs felt comfortable sending him home on the 21st so that he could be home for the holidays and beat the big storm that was heading into our area.  Well, that was a bad decision.  A couple days later (X-mas Eve morning), another extreme breathing difficulty episode.  This time O2 levels dropped to 70.  He is still at UofM hospital now and not doing too well.  They have treated him for pneumonia, other infections, and inflammation.  Haven't seen much improvement.  He is on the bi-pap 24/7 with settings now as high as they go.  Lung docs feel that it is either the cancer or scar tissue in his lungs causing this and gave him days to live.  I requested they contact his oncologist and when he came up, he suggested an infusion of Infliximab.  It is typically for Chron's disease but he has seen it reduce lung inflammation in patients when the high-dose steroids didn't work.  Still waiting to see if that helps at all.  However, yesterday morning, he had a scary episode of extremely high resting heart rate.  Values over 200bpm.  Docs finally got his numbers back to normal (his normal).  He has been sleeping ever since and ate nothing yesterday.  This is so heartbreaking.  

Thought I'd give an update... so, my brother improved enough that the docs felt comfortable sending him home on the 21st so that he could be home for the holidays and beat the big storm that was heading into our area.  Well, that was a bad decision.  A couple days later (X-mas Eve morning), another extreme breathing difficulty episode.  This time O2 levels dropped to 70.  He is still at UofM hospital now and not doing too well.  They have treated him for pneumonia, other infections, and inflammation.  Haven't seen much improvement.  He is on the bi-pap 24/7 with settings now as high as they go.  Lung docs feel that it is either the cancer or scar tissue in his lungs causing this and gave him days to live.  I requested they contact his oncologist and when he came up, he suggested an infusion of Infliximab.  It is typically for Chron's disease but he has seen it reduce lung inflammation in patients when the high-dose steroids didn't work.  Still waiting to see if that helps at all.  However, yesterday morning, he had a scary episode of extremely high resting heart rate.  Values over 200bpm.  Docs finally got his numbers back to normal (his normal).  He has been sleeping ever since and ate nothing yesterday.  This is so heartbreaking.  

Thought I'd give an update... so, my brother improved enough that the docs felt comfortable sending him home on the 21st so that he could be home for the holidays and beat the big storm that was heading into our area.  Well, that was a bad decision.  A couple days later (X-mas Eve morning), another extreme breathing difficulty episode.  This time O2 levels dropped to 70.  He is still at UofM hospital now and not doing too well.  They have treated him for pneumonia, other infections, and inflammation.  Haven't seen much improvement.  He is on the bi-pap 24/7 with settings now as high as they go.  Lung docs feel that it is either the cancer or scar tissue in his lungs causing this and gave him days to live.  I requested they contact his oncologist and when he came up, he suggested an infusion of Infliximab.  It is typically for Chron's disease but he has seen it reduce lung inflammation in patients when the high-dose steroids didn't work.  Still waiting to see if that helps at all.  However, yesterday morning, he had a scary episode of extremely high resting heart rate.  Values over 200bpm.  Docs finally got his numbers back to normal (his normal).  He has been sleeping ever since and ate nothing yesterday.  This is so heartbreaking.  

Thought I'd give an update... so, my brother improved enough that the docs felt comfortable sending him home on the 21st so that he could be home for the holidays and beat the big storm that was heading into our area.  Well, that was a bad decision.  A couple days later (X-mas Eve morning), another extreme breathing difficulty episode.  This time O2 levels dropped to 70.  He is still at UofM hospital now and not doing too well.  They have treated him for pneumonia, other infections, and inflammation.  Haven't seen much improvement.  He is on the bi-pap 24/7 with settings now as high as they go.  Lung docs feel that it is either the cancer or scar tissue in his lungs causing this and gave him days to live.  I requested they contact his oncologist and when he came up, he suggested an infusion of Infliximab.  It is typically for Chron's disease but he has seen it reduce lung inflammation in patients when the high-dose steroids didn't work.  Still waiting to see if that helps at all.  However, yesterday morning, he had a scary episode of extremely high resting heart rate.  Values over 200bpm.  Docs finally got his numbers back to normal (his normal).  He has been sleeping ever since and ate nothing yesterday.  This is so heartbreaking.  

Thought I'd give an update... so, my brother improved enough that the docs felt comfortable sending him home on the 21st so that he could be home for the holidays and beat the big storm that was heading into our area.  Well, that was a bad decision.  A couple days later (X-mas Eve morning), another extreme breathing difficulty episode.  This time O2 levels dropped to 70.  He is still at UofM hospital now and not doing too well.  They have treated him for pneumonia, other infections, and inflammation.  Haven't seen much improvement.  He is on the bi-pap 24/7 with settings now as high as they go.  Lung docs feel that it is either the cancer or scar tissue in his lungs causing this and gave him days to live.  I requested they contact his oncologist and when he came up, he suggested an infusion of Infliximab.  It is typically for Chron's disease but he has seen it reduce lung inflammation in patients when the high-dose steroids didn't work.  Still waiting to see if that helps at all.  However, yesterday morning, he had a scary episode of extremely high resting heart rate.  Values over 200bpm.  Docs finally got his numbers back to normal (his normal).  He has been sleeping ever since and ate nothing yesterday.  This is so heartbreaking.  

Thought I'd give an update... so, my brother improved enough that the docs felt comfortable sending him home on the 21st so that he could be home for the holidays and beat the big storm that was heading into our area.  Well, that was a bad decision.  A couple days later (X-mas Eve morning), another extreme breathing difficulty episode.  This time O2 levels dropped to 70.  He is still at UofM hospital now and not doing too well.  They have treated him for pneumonia, other infections, and inflammation.  Haven't seen much improvement.  He is on the bi-pap 24/7 with settings now as high as they go.  Lung docs feel that it is either the cancer or scar tissue in his lungs causing this and gave him days to live.  I requested they contact his oncologist and when he came up, he suggested an infusion of Infliximab.  It is typically for Chron's disease but he has seen it reduce lung inflammation in patients when the high-dose steroids didn't work.  Still waiting to see if that helps at all.  However, yesterday morning, he had a scary episode of extremely high resting heart rate.  Values over 200bpm.  Docs finally got his numbers back to normal (his normal).  He has been sleeping ever since and ate nothing yesterday.  This is so heartbreaking.  

Thought I'd give an update... so, my brother improved enough that the docs felt comfortable sending him home on the 21st so that he could be home for the holidays and beat the big storm that was heading into our area.  Well, that was a bad decision.  A couple days later (X-mas Eve morning), another extreme breathing difficulty episode.  This time O2 levels dropped to 70.  He is still at UofM hospital now and not doing too well.  They have treated him for pneumonia, other infections, and inflammation.  Haven't seen much improvement.  He is on the bi-pap 24/7 with settings now as high as they go.  Lung docs feel that it is either the cancer or scar tissue in his lungs causing this and gave him days to live.  I requested they contact his oncologist and when he came up, he suggested an infusion of Infliximab.  It is typically for Chron's disease but he has seen it reduce lung inflammation in patients when the high-dose steroids didn't work.  Still waiting to see if that helps at all.  However, yesterday morning, he had a scary episode of extremely high resting heart rate.  Values over 200bpm.  Docs finally got his numbers back to normal (his normal).  He has been sleeping ever since and ate nothing yesterday.  This is so heartbreaking.  

Brother had his first clinical trial treatment a little over a week ago.  All went pretty smooth with minimal side effects.  He had also tested positive for COVID the week prior to his treatment.  Couldn't really notice any COVID symptoms that were any different from his normal NSCLC symptoms.  Anyway, last night he had an episode of excessive breathing difficulty.  O2 level was in the high 70's and so my SiL kicked up his O2 machine a setting or two.  Helped some but finally he agreed (by the nod of his head) to call an ambulance.  Paramedics were able to stabilize his breathing enough to transport him the additional 15 miles to his main treatment hospital (UofM) instead of going to our local hospital.  X-rays, CT scan, bloodwork, etc. etc. etc... and they said he has pneumonia and they put him on a bipap machine.  Just waiting on bloodwork results and to see if they can wean him off of the bipap to decide if they will admit him into a normal room or ICU.    
It is almost one year ago to the date when he was admitted into the same ER with a collapse lung and spent over a month in the hospital through the holidays.  God, I hope he doesn't have to go through that again.  

Brother had his first clinical trial treatment a little over a week ago.  All went pretty smooth with minimal side effects.  He had also tested positive for COVID the week prior to his treatment.  Couldn't really notice any COVID symptoms that were any different from his normal NSCLC symptoms.  Anyway, last night he had an episode of excessive breathing difficulty.  O2 level was in the high 70's and so my SiL kicked up his O2 machine a setting or two.  Helped some but finally he agreed (by the nod of his head) to call an ambulance.  Paramedics were able to stabilize his breathing enough to transport him the additional 15 miles to his main treatment hospital (UofM) instead of going to our local hospital.  X-rays, CT scan, bloodwork, etc. etc. etc... and they said he has pneumonia and they put him on a bipap machine.  Just waiting on bloodwork results and to see if they can wean him off of the bipap to decide if they will admit him into a normal room or ICU.    
It is almost one year ago to the date when he was admitted into the same ER with a collapse lung and spent over a month in the hospital through the holidays.  God, I hope he doesn't have to go through that again.  

Brother had his first clinical trial treatment a little over a week ago.  All went pretty smooth with minimal side effects.  He had also tested positive for COVID the week prior to his treatment.  Couldn't really notice any COVID symptoms that were any different from his normal NSCLC symptoms.  Anyway, last night he had an episode of excessive breathing difficulty.  O2 level was in the high 70's and so my SiL kicked up his O2 machine a setting or two.  Helped some but finally he agreed (by the nod of his head) to call an ambulance.  Paramedics were able to stabilize his breathing enough to transport him the additional 15 miles to his main treatment hospital (UofM) instead of going to our local hospital.  X-rays, CT scan, bloodwork, etc. etc. etc... and they said he has pneumonia and they put him on a bipap machine.  Just waiting on bloodwork results and to see if they can wean him off of the bipap to decide if they will admit him into a normal room or ICU.    
It is almost one year ago to the date when he was admitted into the same ER with a collapse lung and spent over a month in the hospital through the holidays.  God, I hope he doesn't have to go through that again.  

Brother had his first clinical trial treatment a little over a week ago.  All went pretty smooth with minimal side effects.  He had also tested positive for COVID the week prior to his treatment.  Couldn't really notice any COVID symptoms that were any different from his normal NSCLC symptoms.  Anyway, last night he had an episode of excessive breathing difficulty.  O2 level was in the high 70's and so my SiL kicked up his O2 machine a setting or two.  Helped some but finally he agreed (by the nod of his head) to call an ambulance.  Paramedics were able to stabilize his breathing enough to transport him the additional 15 miles to his main treatment hospital (UofM) instead of going to our local hospital.  X-rays, CT scan, bloodwork, etc. etc. etc... and they said he has pneumonia and they put him on a bipap machine.  Just waiting on bloodwork results and to see if they can wean him off of the bipap to decide if they will admit him into a normal room or ICU.    
It is almost one year ago to the date when he was admitted into the same ER with a collapse lung and spent over a month in the hospital through the holidays.  God, I hope he doesn't have to go through that again.  

My brother, 48 yrs old dx with NSCLC stg 4 in May of 2021.  No mutations and PDL1 is negative.  Been through a lot just like most on this forum.  Was supposed to have his 6th treatment of Gemzar on Friday but more progression in his liver convinced his doc to stop the Gemzar.  This was his 3rd-line of standard treatments and now the doc is recommending him to move onto a clinical trial.  Not sure which one yet but this has been a devastating blow to his spirits.  The doc and a bunch of us family have tried to help raise his spirits by explaining that in clinical trials, he'll be getting tomorrow's treatment today! 
We were able to host an awesome tailgate at the UofM / MSU game this past weekend and he was able to attend the entire time.  He basically spent the entire day in a chair in front of the big screen TV but it was great that he was there with us and many visitors were able to see and talk with him also.  Also helped that Michigan whooped their butts too!!!    
Anyway, any positive clinical trial experiences to share with him?

My brother, 48 yrs old dx with NSCLC stg 4 in May of 2021.  No mutations and PDL1 is negative.  Been through a lot just like most on this forum.  Was supposed to have his 6th treatment of Gemzar on Friday but more progression in his liver convinced his doc to stop the Gemzar.  This was his 3rd-line of standard treatments and now the doc is recommending him to move onto a clinical trial.  Not sure which one yet but this has been a devastating blow to his spirits.  The doc and a bunch of us family have tried to help raise his spirits by explaining that in clinical trials, he'll be getting tomorrow's treatment today! 
We were able to host an awesome tailgate at the UofM / MSU game this past weekend and he was able to attend the entire time.  He basically spent the entire day in a chair in front of the big screen TV but it was great that he was there with us and many visitors were able to see and talk with him also.  Also helped that Michigan whooped their butts too!!!    
Anyway, any positive clinical trial experiences to share with him?

Kamoto, it does make some sense... it's just not typical.  If you think about it, all cases where they have done brain surgery to remove a tumor would be Stage IV, just from the fact that it has already spread to the brain.  I think the decision on whether surgery is an option is solely based on the size of the tumor and its location in/on the brain.  As for no bio markers... it just means that none of the ones that were tested for were detected.  My brother had the same biopsy results.  
Having said all of that, KanbeZ mentioned that her mom finished her "3rd set" of chemo combo.  I don't know if that means 3 rounds of treatments of that combo or if she's on her 3rd line of treatments with different drug combos.  If it's the former and only tried that combo, then it is definitely way premature to be considering hospice at this point, especially if her performance level is decent.  Even then, I would be looking at clinical trials.

Just as I was afraid of... his oncologist confirmed that the growth in his liver is very concerning and he needs to switch up treatments.  So, onto the 3rd and final line of treatment.  If this doesn't work, he will need to look into clinical trials.    

Brother just got his scan results back after a couple rounds on Gemzar as a 3rd line treatment.  Chest and Abdomen CT scans were pretty decent.  Mostly stable and some shrinkage.  Brain MRI though wasn't as promising.  Lot's of progression in that report (increase in lesion sizes and also new ones).  Waiting on doc to contact him to discuss next steps.  He had a couple rounds of brain radiation a while (months) back.  He is close to 16 months post dx now.  Overall performance is better than it was a year ago for sure.  However, he does say that he feels as if he is slowly declining.  Might just be all the treatment side effects compounding to make him feel that way though.  He's definitely a fighter though and taking it all on like a champ.    

Brother just got his scan results back after a couple rounds on Gemzar as a 3rd line treatment.  Chest and Abdomen CT scans were pretty decent.  Mostly stable and some shrinkage.  Brain MRI though wasn't as promising.  Lot's of progression in that report (increase in lesion sizes and also new ones).  Waiting on doc to contact him to discuss next steps.  He had a couple rounds of brain radiation a while (months) back.  He is close to 16 months post dx now.  Overall performance is better than it was a year ago for sure.  However, he does say that he feels as if he is slowly declining.  Might just be all the treatment side effects compounding to make him feel that way though.  He's definitely a fighter though and taking it all on like a champ.    

So, after 7 months of Taxotere and Cyramza, I think there's a good chance my brother might be onto a 3rd line treatment.  Got his scan results back late last week and meets with his onc to go over them tomorrow.  However, he sent them to me to review and I didn't see the word "decrease" or "reduced" anywhere.  In fact, more than 10 of the lesions in his liver have increased in size and he has 2 new ones in the abdomen region (report didn't specifically state where).  Also mention of Pancreatic Atrophy.
Definitely not the results we were hoping for but maybe the oncologist will state that it's not as bad as it sounds.  That has happened before.  Anyway, crossing our fingers for tomorrow's discussion.  If they do switch up his treatment, hopefully this next one will be the one that finally works longer term.
Has anyone had some progression while on a treatment plan and your doc kept you on that treatment still?  Or, do they switch it at the first sign of any progression whatsoever?
 

The irony of August 1st being World Lung Cancer Day and also my brother's birthday is still a bit mind-blowing to me.  He is approaching 15 months since his diagnosis of Stg4 NSCLC.  As with many is his situation, he has had his ups and downs.  He doesn't have any mutations and his PDL1 is negative.  So, no targeted therapy and no surprise that immunotherapy didn't work.  He is now on his 3rd line treatment with Gemzar and docs told him that it's onto clinical trials if this doesn't work.  Amazingly, his performance status is still pretty decent (~1).  Just hoping there are more drug breakthroughs coming in the future and that he, and all others dealing with this disease, can hang on that long to benefit from them.  So sad to watch a family member and close friend go through this horrible disease.