Rower Michelle

This sounds like my story!  So no, don’t waste any time in advocating for a low dose CT scan.  I had three months of antibiotics, inhalers and steroids— 4 different doctors, 13 appointments with diagnosis such as sinus infections, allergies, whooping cough, acid reflux, fungal infection, bronchitis, atypical pneumonia, pulmonary embolism before I had the CT scan.  Everyone was shocked when the biopsy revealed a stage IV lung cancer.  It wasn’t ever considered.  
 
Unfortunately my story is shared by many.  Our thoughts and prayers are with you and the best way forward is to demand the scan.  Please keep us posted. 
 
Michelle

Hey guys! 
 
It’s been a bit so I feel as it’s time for an update. Chemo has honestly been a walk in the park. I’m gaining weight back, I have lots of energy and my hair is coming back! I finally feel like my old self again, even though it at times my life isn’t but that’s okay. I’ve been working and studying in college while facing this battle. 
 
However, scan results are next week and I’m very nervous. I really hope that this works in some way, I’ve been through a lot with all this and just want the good news. But I’m also very keen on not getting my hopes up unfortunately. 

So I really ask everyone to please pray and wish me good luck. I really hope everyone as been well and safe. The worlds been crazy lately, last thing some of us need with this disease. 
 
Much Love, 
Alejandro

Hi Michelle 
Sorry, I missed this until this evening when I decided to check in.
I am still skeptical, and hesitant to try it. But, if I run out of conventional options…..

Excellent news Michelle!! Xx

Claudia- I remember your first post very well and I’m soooo happy to hear your great news!   Congrats sister! 

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!  
 

Claudia- I remember your first post very well and I’m soooo happy to hear your great news!   Congrats sister! 

Sorry I'm seeing this so late, But I am SO happy for the great ending!!  I just knew it would be a happy ending!!
You Go GIRL!!  And thanks for your words of wisdom.
Opal
 

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!  
 

Claudia- I remember your first post very well and I’m soooo happy to hear your great news!   Congrats sister! 

Claudia- I remember your first post very well and I’m soooo happy to hear your great news!   Congrats sister! 

Right on Judy… I grew up on top of the Essex Toll Plaza.  ‘Nuff said.  

For any friends living in the Boston area, here is a very last minute opportunity to join The White Ribbon Project and the American Lung Cancer Screening Initiative tomorrow morning at the Kennedy Library.  President Biden will be speaking about the Cancer Moonshot Program and a number of college students from Harvard and BU will be there with their iconic white ribbons.  We've organized for interviews with the media.  Any and all help is appreciated as we work together to raise lung cancer awareness and break the stigma. 
 

For any friends living in the Boston area, here is a very last minute opportunity to join The White Ribbon Project and the American Lung Cancer Screening Initiative tomorrow morning at the Kennedy Library.  President Biden will be speaking about the Cancer Moonshot Program and a number of college students from Harvard and BU will be there with their iconic white ribbons.  We've organized for interviews with the media.  Any and all help is appreciated as we work together to raise lung cancer awareness and break the stigma. 
 

Right on Judy… I grew up on top of the Essex Toll Plaza.  ‘Nuff said.  

I'm having a heard time tracking posts these days, so I just found this. I relate to the numbness. I've come to recognize the names of radiologists who write valuable reports and those who do not. If I get a report from one who is in the latter category, I can wait until a conversation with other folks on my care team. My own radiologist ignores the reports and just reads the scans. I'm grateful for that. And, I'm so, so glad for you. I hope your autumn season will be lovely. 
Karen 

This is a very good podcast about EGFR+ lung cancer featuring the always great Dr. David Carbone, courtesy of the Lung Cancer Foundation of America. 
https://m.youtube.com/watch?v=M4kIBpqWRC0&feature=youtu.be

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, I’m from KS too.  Lou has given you a really nice summary of how to start to get your head wrapped around this.  I was diagnosed with Stage IV lung cancer four years ago at the age of 51 and today am no evidence of disease.  With all the treatment advances, diagnosis is not prognosis. 
You can get great care in rural KS without having to trek to the KC metro.  The most frustrating part is all the waiting as the medical system doesn’t ever move as fast as we want it too.  From diagnosis to treatment plan typically takes 4-8 weeks. 
Take one hour, one day at a time.  We’ve all been there and we’re here to say that you can do this.  Brighter days are coming.  

It’s always and good idea to get a second opinion.  It’s also important that to honor your mother’s wishes in terms of what she wants relative to how she feels.  Some times additional treatment may have unintended consequences so it’s important to ask about treatment toxicity. 
 
When my mother’s team initially  recommended hospice no one in the family wanted to accept the recommendation but she wasn’t eligible for any clinical trials or compassionate use.  
 
If there is a social worker in the clinic, that could be a good resource in helping to guide the decision during a difficult time.  
 
I’m very sorry your Mom is going through all of this.  It’s a hard situation.  Let us know what you both decide. 

Ron, you are an honorary Durva member anyway. I think 18 infusions qualifies you for sure!  
Great good news!

Very wise Laurel, “stay positive” “stay strong” should be on the list of what not to say at this point of time.   It’s okay to become unglued, it’s important not to bottle up the emotions.   Even though it doesn’t feel like it now, it will get better… in the mean time we’ll all be here to carry you along the way….

Very wise Laurel, “stay positive” “stay strong” should be on the list of what not to say at this point of time.   It’s okay to become unglued, it’s important not to bottle up the emotions.   Even though it doesn’t feel like it now, it will get better… in the mean time we’ll all be here to carry you along the way….

So happy to hear from all my dear friends! 

Very wise Laurel, “stay positive” “stay strong” should be on the list of what not to say at this point of time.   It’s okay to become unglued, it’s important not to bottle up the emotions.   Even though it doesn’t feel like it now, it will get better… in the mean time we’ll all be here to carry you along the way….