Rower Michelle

Hello there!
A few of my. friends are on Tagrisso and they all have an issue keeping weight on.   It's a constant battle.  The best guidance they received was to incorporate high calorie/high fat foods into their diet.   Unfortunately, it's not the fun list most of us think of.  Tricks like adding an avocado to smoothies (the whole one; not half like most recipes suggest).    Chia pudding with almond milk (google around some recipes);  ground flax seed/ground hemp seed with applesauce, nuts and nut butters,  Walnuts, almonds and macadamia nuts are pretty high in calories.   
You can sprinkle chia seeds or others nuts into oatmeal.  Getting adequate protein is important.    All of this means is that you will have to eat even when you are not hungry.  If you have no appetite; or poor appetite; my friends have gotten synthetic THC from their palliative care teams to stimulate the appetite.  
It's great news you picked up on this because; you're correct in that the oncs don't like to see weight loss.  I've been told by my team that a healthy cancer weight is 25lbs above my normal adult weight as "an insurance policy".   So you might want to ask about your weight targets....  
Good luck and keep us posted! 
Michelle 

Still NED here too!   

Michelle, I didn't know about the recommended 25 lbs. of extra weight, but after losing 20 lbs. after radiation, I regained it and intend to keep the extra padding. 
Kamoto, I know that people lose weight on Tag because of loss of appetite or change in taste. THC does help with appetite. Your doctor may also have some recommendations for gaining weight. 

Hi Debbie-
Jersey Greetings to you.  I was born and raised there; it's still my home as that's where my family is.  I was raised in Bloomfield and my husband and I lived out in Sussex.   I can appreciate your angst as the local medical care there isn't easy to access and Newtown Memorial isn't a National Cancer Institute.  
Jersey has one NCI- down at Rutgers, which is a hike from you.  I've been a member of this Forum for years now; most people out in Sussex and Warren do end up making the trip into the City where there are better experts at a Comprehensive Cancer Center, which has access to all the latest protocols.   Lori has given you some great advice.  I suppose taking the bus is the best option rather than facing the traffic.  If you're looking for something more local; my mother didn't want to go into the City and got good care from St Barnabas Medical Center.     Memorial Sloan Kettering now has a satellite office (exit 160) and that's a bit of a hike too for you, but still a potential option.   
As Tom pointed out, you're early into this and the most important thing you will need to learn after the biopsy, if it's lung cancer, to find out specifically what type of lung cancer you have.  There are many types that can only be identified by biomarker testing (also called genetic testing and a number of others).  Once you have identified which type of lung cancer, then you can be matched with a doctor who specializes by sub-type, 
Like you I was a never smoker; my symptoms went misdiagnosed for a long time.   I have a genetic rearrangement called ALK, I see a physician in KC who specializes in never smoker lung cancers.  It's a shock to all of us because no one is looking for lung cancer in non-smokers.   The first few weeks are dizzying but things do settle down and you've now made a whole bunch of new friends that are here to help you get through these tough times. 
Michelle 

Hi Debbie-
Jersey Greetings to you.  I was born and raised there; it's still my home as that's where my family is.  I was raised in Bloomfield and my husband and I lived out in Sussex.   I can appreciate your angst as the local medical care there isn't easy to access and Newtown Memorial isn't a National Cancer Institute.  
Jersey has one NCI- down at Rutgers, which is a hike from you.  I've been a member of this Forum for years now; most people out in Sussex and Warren do end up making the trip into the City where there are better experts at a Comprehensive Cancer Center, which has access to all the latest protocols.   Lori has given you some great advice.  I suppose taking the bus is the best option rather than facing the traffic.  If you're looking for something more local; my mother didn't want to go into the City and got good care from St Barnabas Medical Center.     Memorial Sloan Kettering now has a satellite office (exit 160) and that's a bit of a hike too for you, but still a potential option.   
As Tom pointed out, you're early into this and the most important thing you will need to learn after the biopsy, if it's lung cancer, to find out specifically what type of lung cancer you have.  There are many types that can only be identified by biomarker testing (also called genetic testing and a number of others).  Once you have identified which type of lung cancer, then you can be matched with a doctor who specializes by sub-type, 
Like you I was a never smoker; my symptoms went misdiagnosed for a long time.   I have a genetic rearrangement called ALK, I see a physician in KC who specializes in never smoker lung cancers.  It's a shock to all of us because no one is looking for lung cancer in non-smokers.   The first few weeks are dizzying but things do settle down and you've now made a whole bunch of new friends that are here to help you get through these tough times. 
Michelle 

Still NED here too!   

Still NED here too!   

Barb and Rower I'm on the same train your two are. Scan this friday, 2 1/2 years since last durva...   Scanxiety time until results are known... 
What did the beach say to the tide when it came in?
Long time, no sea.

Hi Debbie-
Jersey Greetings to you.  I was born and raised there; it's still my home as that's where my family is.  I was raised in Bloomfield and my husband and I lived out in Sussex.   I can appreciate your angst as the local medical care there isn't easy to access and Newtown Memorial isn't a National Cancer Institute.  
Jersey has one NCI- down at Rutgers, which is a hike from you.  I've been a member of this Forum for years now; most people out in Sussex and Warren do end up making the trip into the City where there are better experts at a Comprehensive Cancer Center, which has access to all the latest protocols.   Lori has given you some great advice.  I suppose taking the bus is the best option rather than facing the traffic.  If you're looking for something more local; my mother didn't want to go into the City and got good care from St Barnabas Medical Center.     Memorial Sloan Kettering now has a satellite office (exit 160) and that's a bit of a hike too for you, but still a potential option.   
As Tom pointed out, you're early into this and the most important thing you will need to learn after the biopsy, if it's lung cancer, to find out specifically what type of lung cancer you have.  There are many types that can only be identified by biomarker testing (also called genetic testing and a number of others).  Once you have identified which type of lung cancer, then you can be matched with a doctor who specializes by sub-type, 
Like you I was a never smoker; my symptoms went misdiagnosed for a long time.   I have a genetic rearrangement called ALK, I see a physician in KC who specializes in never smoker lung cancers.  It's a shock to all of us because no one is looking for lung cancer in non-smokers.   The first few weeks are dizzying but things do settle down and you've now made a whole bunch of new friends that are here to help you get through these tough times. 
Michelle 

Big congrats to you on such great news!

Michelle,
Love hearing NED for you...it's been a good week.
Lou

That is great news Michelle.

So happy for you Michelle! Now time for you and husband to celebrate after such anxious moments!

Whew, what a relief. Congratulations! 

Great news - congratulations!

Hi Debbie,
I’m so sorry for all your wait and worry. If you do want to “ take the ride”, ( probably an hour and 45 minutes!) I would still recommend your coming into the city and making an appointment with either NYU or NY Presbyterian. Both hospitals have the latest equipment, scanners, and teams of doctors highly specialized in Lung Cancer treatment. I have a wonderful Pulmonologist that took my case very seriously and then referred me to a top Cardio-Thoracic Surgeon(who I will be having surgery with in 2 weeks) They work together as a team, and I know I’m in great hands and my worries are eased. They are also warm and personable, take time with you, give helpful, knowledgeable, experienced information to help you make the best decisions going forward.
Being new to this board myself, I’m not sure if I can post the Dr.s names here, if so, and you would like them, I’d be happy to share that with you.
Will be keeping you in my thoughts. Glad you reposted. So many wonderful, supportive people here.
Best,
Lori
 

Warning: long post and I promise it is good news!  Scroll down to the bottom if short on time.
 
The summer just seems to be flying by.  This week it was time for my semi annual re-staging scans-four scans in total: brain MRI, CT-chest/abd/pelvis and labs.  It's a long appointment at the hospital because I prefer the "one and one" trip.   I wasn't overly worried going into these scans because I've generally been feeling well (minus the typical side effects of targeted therapy).  I had an excellent PT session the day before, acupuncture that morning, and 5mg of Valium on board... totally zen place right?
The labs and CT scans were run through very quickly.  Even though the place was a total zoo, the nurses and techs were moving like a well coordinated team.  There was about an hour delay for the MRI, so while I was waiting in a private room; the CT scan results popped in-15 minutes after the scan. 
Now I was in a quandry, should I peek at the results?  The TV had on the food network of which I had zero interest. I looked around for the remote and it was no where to be found to change the channel... so what the heck.... the big decision to peek. 
I wish I hadn't as a different radiologist (who has never reviewed by scans before) wrote a lengthy report.  For those of us who have been around for a long time; we're accustomed to seeing our reports get shorter; not longer over time.   This doc was completely geeked out on all sorts of technical terminology.   For the first time in four years, it looked like there could be disease progression noted.  I was numb.  No emotion, no reaction.   Time was passing in the waiting room and the nurse suggested if I had a second valium; to take it soon.   No problem there; bottoms up.  So now I had 10mg of Valium on board.  Loopy city. 
The MRI went quickly-out in about 30 minutes.   When my husband picked me up at the hospital I decided not to tell him about the CT scans.  I didn't want to upset him unnecessarily.   Long ago, I made a deal with my oncologist not to Google CT scan reports.  BUT I never committed to sharing results with my friends..... I sent a screen shot to my Lungevity Phone Buddy.  Her read was the scans were fine and it was a poorly written report.    
Then I spilled the beans to hubby and immediately regretted doing so.   The angst was heartbreaking.
Our appointment was schedule the next morning; so we would have the clarification we needed.  I always write a memo to my Onco in advance of the appointment to say what's on my mind....
When he walked into the room he said:  "so what kind of clarification do you need on your scans??"   My doctor recognizes me as a peer and this was one time I was squarely in limbo land......
Bottom line: 
The scans are NED; all of them.   The radiologist wrote a overly complicated report; and once again the reason for this very lengthy note is to remind people to always wait for your oncologist to read the scans.... and rely on your Lungevity friends to carry you through the tough times!  
 

Warning: long post and I promise it is good news!  Scroll down to the bottom if short on time.
 
The summer just seems to be flying by.  This week it was time for my semi annual re-staging scans-four scans in total: brain MRI, CT-chest/abd/pelvis and labs.  It's a long appointment at the hospital because I prefer the "one and one" trip.   I wasn't overly worried going into these scans because I've generally been feeling well (minus the typical side effects of targeted therapy).  I had an excellent PT session the day before, acupuncture that morning, and 5mg of Valium on board... totally zen place right?
The labs and CT scans were run through very quickly.  Even though the place was a total zoo, the nurses and techs were moving like a well coordinated team.  There was about an hour delay for the MRI, so while I was waiting in a private room; the CT scan results popped in-15 minutes after the scan. 
Now I was in a quandry, should I peek at the results?  The TV had on the food network of which I had zero interest. I looked around for the remote and it was no where to be found to change the channel... so what the heck.... the big decision to peek. 
I wish I hadn't as a different radiologist (who has never reviewed by scans before) wrote a lengthy report.  For those of us who have been around for a long time; we're accustomed to seeing our reports get shorter; not longer over time.   This doc was completely geeked out on all sorts of technical terminology.   For the first time in four years, it looked like there could be disease progression noted.  I was numb.  No emotion, no reaction.   Time was passing in the waiting room and the nurse suggested if I had a second valium; to take it soon.   No problem there; bottoms up.  So now I had 10mg of Valium on board.  Loopy city. 
The MRI went quickly-out in about 30 minutes.   When my husband picked me up at the hospital I decided not to tell him about the CT scans.  I didn't want to upset him unnecessarily.   Long ago, I made a deal with my oncologist not to Google CT scan reports.  BUT I never committed to sharing results with my friends..... I sent a screen shot to my Lungevity Phone Buddy.  Her read was the scans were fine and it was a poorly written report.    
Then I spilled the beans to hubby and immediately regretted doing so.   The angst was heartbreaking.
Our appointment was schedule the next morning; so we would have the clarification we needed.  I always write a memo to my Onco in advance of the appointment to say what's on my mind....
When he walked into the room he said:  "so what kind of clarification do you need on your scans??"   My doctor recognizes me as a peer and this was one time I was squarely in limbo land......
Bottom line: 
The scans are NED; all of them.   The radiologist wrote a overly complicated report; and once again the reason for this very lengthy note is to remind people to always wait for your oncologist to read the scans.... and rely on your Lungevity friends to carry you through the tough times!  
 

Warning: long post and I promise it is good news!  Scroll down to the bottom if short on time.
 
The summer just seems to be flying by.  This week it was time for my semi annual re-staging scans-four scans in total: brain MRI, CT-chest/abd/pelvis and labs.  It's a long appointment at the hospital because I prefer the "one and one" trip.   I wasn't overly worried going into these scans because I've generally been feeling well (minus the typical side effects of targeted therapy).  I had an excellent PT session the day before, acupuncture that morning, and 5mg of Valium on board... totally zen place right?
The labs and CT scans were run through very quickly.  Even though the place was a total zoo, the nurses and techs were moving like a well coordinated team.  There was about an hour delay for the MRI, so while I was waiting in a private room; the CT scan results popped in-15 minutes after the scan. 
Now I was in a quandry, should I peek at the results?  The TV had on the food network of which I had zero interest. I looked around for the remote and it was no where to be found to change the channel... so what the heck.... the big decision to peek. 
I wish I hadn't as a different radiologist (who has never reviewed by scans before) wrote a lengthy report.  For those of us who have been around for a long time; we're accustomed to seeing our reports get shorter; not longer over time.   This doc was completely geeked out on all sorts of technical terminology.   For the first time in four years, it looked like there could be disease progression noted.  I was numb.  No emotion, no reaction.   Time was passing in the waiting room and the nurse suggested if I had a second valium; to take it soon.   No problem there; bottoms up.  So now I had 10mg of Valium on board.  Loopy city. 
The MRI went quickly-out in about 30 minutes.   When my husband picked me up at the hospital I decided not to tell him about the CT scans.  I didn't want to upset him unnecessarily.   Long ago, I made a deal with my oncologist not to Google CT scan reports.  BUT I never committed to sharing results with my friends..... I sent a screen shot to my Lungevity Phone Buddy.  Her read was the scans were fine and it was a poorly written report.    
Then I spilled the beans to hubby and immediately regretted doing so.   The angst was heartbreaking.
Our appointment was schedule the next morning; so we would have the clarification we needed.  I always write a memo to my Onco in advance of the appointment to say what's on my mind....
When he walked into the room he said:  "so what kind of clarification do you need on your scans??"   My doctor recognizes me as a peer and this was one time I was squarely in limbo land......
Bottom line: 
The scans are NED; all of them.   The radiologist wrote a overly complicated report; and once again the reason for this very lengthy note is to remind people to always wait for your oncologist to read the scans.... and rely on your Lungevity friends to carry you through the tough times!  
 

Great to hear!   Carry on….. very happy for you my dear friend! 

Warning: long post and I promise it is good news!  Scroll down to the bottom if short on time.
 
The summer just seems to be flying by.  This week it was time for my semi annual re-staging scans-four scans in total: brain MRI, CT-chest/abd/pelvis and labs.  It's a long appointment at the hospital because I prefer the "one and one" trip.   I wasn't overly worried going into these scans because I've generally been feeling well (minus the typical side effects of targeted therapy).  I had an excellent PT session the day before, acupuncture that morning, and 5mg of Valium on board... totally zen place right?
The labs and CT scans were run through very quickly.  Even though the place was a total zoo, the nurses and techs were moving like a well coordinated team.  There was about an hour delay for the MRI, so while I was waiting in a private room; the CT scan results popped in-15 minutes after the scan. 
Now I was in a quandry, should I peek at the results?  The TV had on the food network of which I had zero interest. I looked around for the remote and it was no where to be found to change the channel... so what the heck.... the big decision to peek. 
I wish I hadn't as a different radiologist (who has never reviewed by scans before) wrote a lengthy report.  For those of us who have been around for a long time; we're accustomed to seeing our reports get shorter; not longer over time.   This doc was completely geeked out on all sorts of technical terminology.   For the first time in four years, it looked like there could be disease progression noted.  I was numb.  No emotion, no reaction.   Time was passing in the waiting room and the nurse suggested if I had a second valium; to take it soon.   No problem there; bottoms up.  So now I had 10mg of Valium on board.  Loopy city. 
The MRI went quickly-out in about 30 minutes.   When my husband picked me up at the hospital I decided not to tell him about the CT scans.  I didn't want to upset him unnecessarily.   Long ago, I made a deal with my oncologist not to Google CT scan reports.  BUT I never committed to sharing results with my friends..... I sent a screen shot to my Lungevity Phone Buddy.  Her read was the scans were fine and it was a poorly written report.    
Then I spilled the beans to hubby and immediately regretted doing so.   The angst was heartbreaking.
Our appointment was schedule the next morning; so we would have the clarification we needed.  I always write a memo to my Onco in advance of the appointment to say what's on my mind....
When he walked into the room he said:  "so what kind of clarification do you need on your scans??"   My doctor recognizes me as a peer and this was one time I was squarely in limbo land......
Bottom line: 
The scans are NED; all of them.   The radiologist wrote a overly complicated report; and once again the reason for this very lengthy note is to remind people to always wait for your oncologist to read the scans.... and rely on your Lungevity friends to carry you through the tough times!  
 

Warning: long post and I promise it is good news!  Scroll down to the bottom if short on time.
 
The summer just seems to be flying by.  This week it was time for my semi annual re-staging scans-four scans in total: brain MRI, CT-chest/abd/pelvis and labs.  It's a long appointment at the hospital because I prefer the "one and one" trip.   I wasn't overly worried going into these scans because I've generally been feeling well (minus the typical side effects of targeted therapy).  I had an excellent PT session the day before, acupuncture that morning, and 5mg of Valium on board... totally zen place right?
The labs and CT scans were run through very quickly.  Even though the place was a total zoo, the nurses and techs were moving like a well coordinated team.  There was about an hour delay for the MRI, so while I was waiting in a private room; the CT scan results popped in-15 minutes after the scan. 
Now I was in a quandry, should I peek at the results?  The TV had on the food network of which I had zero interest. I looked around for the remote and it was no where to be found to change the channel... so what the heck.... the big decision to peek. 
I wish I hadn't as a different radiologist (who has never reviewed by scans before) wrote a lengthy report.  For those of us who have been around for a long time; we're accustomed to seeing our reports get shorter; not longer over time.   This doc was completely geeked out on all sorts of technical terminology.   For the first time in four years, it looked like there could be disease progression noted.  I was numb.  No emotion, no reaction.   Time was passing in the waiting room and the nurse suggested if I had a second valium; to take it soon.   No problem there; bottoms up.  So now I had 10mg of Valium on board.  Loopy city. 
The MRI went quickly-out in about 30 minutes.   When my husband picked me up at the hospital I decided not to tell him about the CT scans.  I didn't want to upset him unnecessarily.   Long ago, I made a deal with my oncologist not to Google CT scan reports.  BUT I never committed to sharing results with my friends..... I sent a screen shot to my Lungevity Phone Buddy.  Her read was the scans were fine and it was a poorly written report.    
Then I spilled the beans to hubby and immediately regretted doing so.   The angst was heartbreaking.
Our appointment was schedule the next morning; so we would have the clarification we needed.  I always write a memo to my Onco in advance of the appointment to say what's on my mind....
When he walked into the room he said:  "so what kind of clarification do you need on your scans??"   My doctor recognizes me as a peer and this was one time I was squarely in limbo land......
Bottom line: 
The scans are NED; all of them.   The radiologist wrote a overly complicated report; and once again the reason for this very lengthy note is to remind people to always wait for your oncologist to read the scans.... and rely on your Lungevity friends to carry you through the tough times!  
 

Michelle 
That's fantastic I'm so pleased for you well done 
Take care Justin x 

Michelle 
I should've scrolled to the bottom first  My heart was racing reading the post till I got to NED. Happy for you Michelle. 
Take care

Warning: long post and I promise it is good news!  Scroll down to the bottom if short on time.
 
The summer just seems to be flying by.  This week it was time for my semi annual re-staging scans-four scans in total: brain MRI, CT-chest/abd/pelvis and labs.  It's a long appointment at the hospital because I prefer the "one and one" trip.   I wasn't overly worried going into these scans because I've generally been feeling well (minus the typical side effects of targeted therapy).  I had an excellent PT session the day before, acupuncture that morning, and 5mg of Valium on board... totally zen place right?
The labs and CT scans were run through very quickly.  Even though the place was a total zoo, the nurses and techs were moving like a well coordinated team.  There was about an hour delay for the MRI, so while I was waiting in a private room; the CT scan results popped in-15 minutes after the scan. 
Now I was in a quandry, should I peek at the results?  The TV had on the food network of which I had zero interest. I looked around for the remote and it was no where to be found to change the channel... so what the heck.... the big decision to peek. 
I wish I hadn't as a different radiologist (who has never reviewed by scans before) wrote a lengthy report.  For those of us who have been around for a long time; we're accustomed to seeing our reports get shorter; not longer over time.   This doc was completely geeked out on all sorts of technical terminology.   For the first time in four years, it looked like there could be disease progression noted.  I was numb.  No emotion, no reaction.   Time was passing in the waiting room and the nurse suggested if I had a second valium; to take it soon.   No problem there; bottoms up.  So now I had 10mg of Valium on board.  Loopy city. 
The MRI went quickly-out in about 30 minutes.   When my husband picked me up at the hospital I decided not to tell him about the CT scans.  I didn't want to upset him unnecessarily.   Long ago, I made a deal with my oncologist not to Google CT scan reports.  BUT I never committed to sharing results with my friends..... I sent a screen shot to my Lungevity Phone Buddy.  Her read was the scans were fine and it was a poorly written report.    
Then I spilled the beans to hubby and immediately regretted doing so.   The angst was heartbreaking.
Our appointment was schedule the next morning; so we would have the clarification we needed.  I always write a memo to my Onco in advance of the appointment to say what's on my mind....
When he walked into the room he said:  "so what kind of clarification do you need on your scans??"   My doctor recognizes me as a peer and this was one time I was squarely in limbo land......
Bottom line: 
The scans are NED; all of them.   The radiologist wrote a overly complicated report; and once again the reason for this very lengthy note is to remind people to always wait for your oncologist to read the scans.... and rely on your Lungevity friends to carry you through the tough times!