Opal

Tomorrow (February 4th) I celebrate 19 years of life after diagnosis with NSCLC, squamous cell. I’m tapping this post out on a small screen while rocking and rolling in the middle of the Caribbean Sea, in route to Cartagena Columbia on our celebratory cruise. WIFI is spotty, thus the early announcement   
Two points are relevant for our Forum community: celebrate life, and if I can live, so can you. 
Stay the course. 
Tom

Hi Karen-that’s exactly what the oncologist told me today. Says I will always have “busy” lungs from the radiation. So we are just watching and doing another CT in 3 months. She said she is not worried about this at all. So if she’s not worried I’m not wasting my time being worried. 

I had radiation 4 years ago. Thanks I didn’t know this. As far as the reports, this is a fairly new law in the US, a few years, they have to be released as soon as available. I would rather have them before I get to the doctors office so I have my questions lined up. The few times at the beginning when I didn’t have the results and it was bad news I just went blank and couldn’t think of what to ask. 

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
 

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
 

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!  
 

Hi Everyone!
I'm sorry it's been a long time since I posted an update to my stage IV NSCLC story but here it is. After being told that I was non-surgical  because of being stage IV I am here to tell you that my oncologist and I have decided that the end of November will be my last treatment. After 3 1/2 years of chemo, Keytruda, SBRT radiation and finally a left upper lobectomy and 2 years of clean scans and more Keytruda I am being set free. November 4 will be 2 years that I am NED. I can't believe it. Stage IV and now NED for 2 years. I feel like the luckiest person on the planet. It just goes to show that treatments are getting better and patients are living longer. Never give up. NEVER. 
Thanks for all the support through this insane journey. I love you all.
Claudia

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

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

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

Hello all!
Been awhile since I've posted here. Glad to hear all is well with you guys! Sheesh! I went straight to 6 month CT scans after I completed my durva ride. Now I'm waiting nervously for my yearly which isn't until December! My 3yr cancer ned was in May of this yr. My oncologist says I'm fine 🙃 righto! Lots of drama in my Life past 8 months started stupid smoking cigs again tried to stop with all the regular methods nothing is working for me. Oh well hells bells, I'll just keep trying! Congratulations to all and since summer is coming to an end I hope everyone had an enjoyable one!
Namaste Roseann
 
 

So happy to hear from all my dear friends! 

This must be CT season. Even though I didn't "graduate from the Durva club" by only making it to 18 Infusions before being shipped off to the ALK+ mutant gang and started on a Targeted Therapy drug, ALECTINIB, I had my quarterly CT yesterday. Although I don't see my ONC till Thursday, I read the Radiologists report this morning. 
IMPRESSION: Stable exam without evidence of local recurrence or thoracic metastatic disease.
😃

Yay Tomm. This was my first 6 month wait as well. We are blazing trails!

This was the 1st time I got to wait 6 months to get my CT and results are NED. I get to wait 6 months again. My 6 year cancerversary is in two days. This is 2 1/2 years after Durva treatment is finished. 
2 jokes bonus
Q: Why don’t oysters share their pearls?
A: Because they’re shellfish!
Q: What kind of candy do you get at the airport?
A: Plane chocolate!
 

Hey all you gals and guys NED!! So happy to hear...hugs and kisses.
Yep, Rower..luv ya and think of my contact with you that dreadful day often. My heart still sad for my hubby. He was a real good guy and never once complained thru that long PanCan "journey". 
TX for your support.  
Anyway, I'm not on site too often as I'm caregiving for my Mom. Last 6-7 years and been one thing after another. And oh yes, I got a puppy who is now 2 and keeps me crazy busy. 
Happy for ya all.. Barb, Jersey girls, Tomm and the entire Durva club.  Wondering does anyone get to stretch scans out to 6 months or annually now??
Rower, 4 years!?   Really??  You always gave me hope!! Thank you. My heart is singing! (Corny but true)
I guess we're part of the new stats now, huh??
Love you all!!
Ps:. Wondering if anyone else has other health blips now going on and wonders/worries if it's the C, radiation or treatment result?  I now have a Cardio doc.
Opal
 
 

Hey all you gals and guys NED!! So happy to hear...hugs and kisses.
Yep, Rower..luv ya and think of my contact with you that dreadful day often. My heart still sad for my hubby. He was a real good guy and never once complained thru that long PanCan "journey". 
TX for your support.  
Anyway, I'm not on site too often as I'm caregiving for my Mom. Last 6-7 years and been one thing after another. And oh yes, I got a puppy who is now 2 and keeps me crazy busy. 
Happy for ya all.. Barb, Jersey girls, Tomm and the entire Durva club.  Wondering does anyone get to stretch scans out to 6 months or annually now??
Rower, 4 years!?   Really??  You always gave me hope!! Thank you. My heart is singing! (Corny but true)
I guess we're part of the new stats now, huh??
Love you all!!
Ps:. Wondering if anyone else has other health blips now going on and wonders/worries if it's the C, radiation or treatment result?  I now have a Cardio doc.
Opal
 
 

Hey all you gals and guys NED!! So happy to hear...hugs and kisses.
Yep, Rower..luv ya and think of my contact with you that dreadful day often. My heart still sad for my hubby. He was a real good guy and never once complained thru that long PanCan "journey". 
TX for your support.  
Anyway, I'm not on site too often as I'm caregiving for my Mom. Last 6-7 years and been one thing after another. And oh yes, I got a puppy who is now 2 and keeps me crazy busy. 
Happy for ya all.. Barb, Jersey girls, Tomm and the entire Durva club.  Wondering does anyone get to stretch scans out to 6 months or annually now??
Rower, 4 years!?   Really??  You always gave me hope!! Thank you. My heart is singing! (Corny but true)
I guess we're part of the new stats now, huh??
Love you all!!
Ps:. Wondering if anyone else has other health blips now going on and wonders/worries if it's the C, radiation or treatment result?  I now have a Cardio doc.
Opal
 
 

Hey all you gals and guys NED!! So happy to hear...hugs and kisses.
Yep, Rower..luv ya and think of my contact with you that dreadful day often. My heart still sad for my hubby. He was a real good guy and never once complained thru that long PanCan "journey". 
TX for your support.  
Anyway, I'm not on site too often as I'm caregiving for my Mom. Last 6-7 years and been one thing after another. And oh yes, I got a puppy who is now 2 and keeps me crazy busy. 
Happy for ya all.. Barb, Jersey girls, Tomm and the entire Durva club.  Wondering does anyone get to stretch scans out to 6 months or annually now??
Rower, 4 years!?   Really??  You always gave me hope!! Thank you. My heart is singing! (Corny but true)
I guess we're part of the new stats now, huh??
Love you all!!
Ps:. Wondering if anyone else has other health blips now going on and wonders/worries if it's the C, radiation or treatment result?  I now have a Cardio doc.
Opal
 
 

Hey all you gals and guys NED!! So happy to hear...hugs and kisses.
Yep, Rower..luv ya and think of my contact with you that dreadful day often. My heart still sad for my hubby. He was a real good guy and never once complained thru that long PanCan "journey". 
TX for your support.  
Anyway, I'm not on site too often as I'm caregiving for my Mom. Last 6-7 years and been one thing after another. And oh yes, I got a puppy who is now 2 and keeps me crazy busy. 
Happy for ya all.. Barb, Jersey girls, Tomm and the entire Durva club.  Wondering does anyone get to stretch scans out to 6 months or annually now??
Rower, 4 years!?   Really??  You always gave me hope!! Thank you. My heart is singing! (Corny but true)
I guess we're part of the new stats now, huh??
Love you all!!
Ps:. Wondering if anyone else has other health blips now going on and wonders/worries if it's the C, radiation or treatment result?  I now have a Cardio doc.
Opal
 
 

Yay Michelle!

Still NED here too!   

Barb..I remember  when we started at the  same time just a week apart great news to hear you are still NED!! In what state does the Willamette River flow?… Liquid

Tom-we ended Durva about the same time. I’m thrilled to report that I am still NED!!!  I’m sure you will do well too!
michelle-how was yours?