Susan Cornett

Congrats on the NED to both Lou and Judy! I love seeing these updates.

I too have had some issue/aggravation with the N95 masks so I appreciate the info on the KN94. I have two trips coming up where I have to fly so I want to be prepared.

Congrats on the NED to both Lou and Judy! I love seeing these updates.

Great news - congratulations!

I too have had some issue/aggravation with the N95 masks so I appreciate the info on the KN94. I have two trips coming up where I have to fly so I want to be prepared.

Not to hijack Lou's good news but I too continue to be NED. Thanks for the good wishes, everyone. 

I had my first annual CT Scan yesterday (lobectomy was 5/2/19) and although I was concerned about the longer interval between scans all worked out well.  The scan result reads "stable with no evidence of recurrant or malignant neoplasm".  I have my meeting with the oncologist on Wednesday and can focus on the future. Scanziety is real, but some great folks in my life kept my feet on the ground and my head on my shoulders while God did the rest.  I'm quite blessed.

Lou

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 Mary Kate and welcome. I'm a Stage IIIB survivor, diagnosed in October 2019. I had chemo and radiation first, then started Tagrisso in March 2020. I currently have No Evidence of Disease (NED) and, as my oncologist proclaimed last week,  I've "kicked cancer's a**". 
In addition to this forum, there are a few private Facebook groups for EGFR folks that you might want to check out:
https://www.facebook.com/groups/2098822473719352/?ref=share
https://www.facebook.com/groups/EGFRlung/?ref=share
https://www.facebook.com/groups/targetedtherapylung/?ref=share
https://www.facebook.com/groups/EGFRResisters/?ref=share
Like you, I have very few side effects from Tagrisso, and I hope to stay on it for a long time. 

Susan,
Thank God that your friend had someone to speak to who can understand exactly what she was feeling as well as being able to provide some sound experiential advice.  You are a blessing for her.
Lou

When I was diagnosed with cancer, my friends/family were by my side every step of the way. They offered help, went with me to chemo, listened when I cried, brought us meals. In short, they were awesome. I had so much on my mind that I didn't think too much about what they were thinking. I wasn't tuned in to their fear for me. 
Two weeks ago, my oldest friend called to tell me she has stage 3 kidney cancer. We discussed her treatment and I asked the practical questions that cancer survivors think to ask. But once we got off the phone, my jaw hit the floor. I just sat there dumbfounded, not knowing what to do. It was odd being on that side of the diagnosis. I'm still in shock but know that she'll be okay. She has a treatment plan and a great support system. 
I'm tired of this cancer nonsense.
 
 
 
 
 
 

Hi there and welcome 
I was diagnosed stage 4 NSCLC adenocarcinoma about 9 months ago.I did one round of chemo while waiting on the biomarker test. It came back positive for ALK mutation. I've been on targeted therapy Alectinib for about 6.5 months now. Had a pet scan about 4 weeks ago and no cancer is lighting up.Good luck on your treatment please keep us updated
Take care Chuck

Steph - 
I am so sorry for your loss. She was so loved and will be missed. Keeping you and your brother in my prayers.

Hi Jill. First - you have to be your own advocate. I carried a notebook for 2 years with questions and notes. My oncologist expected me to break out that notebook in the early visits. 
Which chemo drug(s) will you take? I took cisplatin and alimta (pemetrexed) for my first cycle. For this round, Super Doc prescribed two different anti-nausea meds that I could alternate so I didn't really get a chance to get nauseated. My side effects are/were neuropathy and tinnitus. The following year I took carboplatin and taxol, along with radiation. I lost my hair but losing hair during July in Texas isn't too bad.
I highly recommend this site - it's run by the Cleveland Clinic and provides side effects and therapies to address them for most chemo treatments.
Lean on the wonderful people on this site. We're here for you.

Hi Samantha - 
My feelings brought me to Lungevity six years ago and it was an excellent choice for me. I can come here to ask questions, vent, worry, etc. It's not that my support system wouldn't listen - they would. But they don't understand all that I've gone through. I was diagnosed 6.5 years ago (stage IV) and have been cancer free for almost 4 years. This diagnosis isn't the death sentence it once was.
If you haven't already seen it, there is a forum just for caregivers. Your family might find it useful for their questions.
 

When I was diagnosed with cancer, my friends/family were by my side every step of the way. They offered help, went with me to chemo, listened when I cried, brought us meals. In short, they were awesome. I had so much on my mind that I didn't think too much about what they were thinking. I wasn't tuned in to their fear for me. 
Two weeks ago, my oldest friend called to tell me she has stage 3 kidney cancer. We discussed her treatment and I asked the practical questions that cancer survivors think to ask. But once we got off the phone, my jaw hit the floor. I just sat there dumbfounded, not knowing what to do. It was odd being on that side of the diagnosis. I'm still in shock but know that she'll be okay. She has a treatment plan and a great support system. 
I'm tired of this cancer nonsense.
 
 
 
 
 
 

Hi Jill. First - you have to be your own advocate. I carried a notebook for 2 years with questions and notes. My oncologist expected me to break out that notebook in the early visits. 
Which chemo drug(s) will you take? I took cisplatin and alimta (pemetrexed) for my first cycle. For this round, Super Doc prescribed two different anti-nausea meds that I could alternate so I didn't really get a chance to get nauseated. My side effects are/were neuropathy and tinnitus. The following year I took carboplatin and taxol, along with radiation. I lost my hair but losing hair during July in Texas isn't too bad.
I highly recommend this site - it's run by the Cleveland Clinic and provides side effects and therapies to address them for most chemo treatments.
Lean on the wonderful people on this site. We're here for you.

Hi Samantha - 
My feelings brought me to Lungevity six years ago and it was an excellent choice for me. I can come here to ask questions, vent, worry, etc. It's not that my support system wouldn't listen - they would. But they don't understand all that I've gone through. I was diagnosed 6.5 years ago (stage IV) and have been cancer free for almost 4 years. This diagnosis isn't the death sentence it once was.
If you haven't already seen it, there is a forum just for caregivers. Your family might find it useful for their questions.
 

Hi Jill. First - you have to be your own advocate. I carried a notebook for 2 years with questions and notes. My oncologist expected me to break out that notebook in the early visits. 
Which chemo drug(s) will you take? I took cisplatin and alimta (pemetrexed) for my first cycle. For this round, Super Doc prescribed two different anti-nausea meds that I could alternate so I didn't really get a chance to get nauseated. My side effects are/were neuropathy and tinnitus. The following year I took carboplatin and taxol, along with radiation. I lost my hair but losing hair during July in Texas isn't too bad.
I highly recommend this site - it's run by the Cleveland Clinic and provides side effects and therapies to address them for most chemo treatments.
Lean on the wonderful people on this site. We're here for you.

When I was diagnosed with cancer, my friends/family were by my side every step of the way. They offered help, went with me to chemo, listened when I cried, brought us meals. In short, they were awesome. I had so much on my mind that I didn't think too much about what they were thinking. I wasn't tuned in to their fear for me. 
Two weeks ago, my oldest friend called to tell me she has stage 3 kidney cancer. We discussed her treatment and I asked the practical questions that cancer survivors think to ask. But once we got off the phone, my jaw hit the floor. I just sat there dumbfounded, not knowing what to do. It was odd being on that side of the diagnosis. I'm still in shock but know that she'll be okay. She has a treatment plan and a great support system. 
I'm tired of this cancer nonsense.
 
 
 
 
 
 

Hi Jill. First - you have to be your own advocate. I carried a notebook for 2 years with questions and notes. My oncologist expected me to break out that notebook in the early visits. 
Which chemo drug(s) will you take? I took cisplatin and alimta (pemetrexed) for my first cycle. For this round, Super Doc prescribed two different anti-nausea meds that I could alternate so I didn't really get a chance to get nauseated. My side effects are/were neuropathy and tinnitus. The following year I took carboplatin and taxol, along with radiation. I lost my hair but losing hair during July in Texas isn't too bad.
I highly recommend this site - it's run by the Cleveland Clinic and provides side effects and therapies to address them for most chemo treatments.
Lean on the wonderful people on this site. We're here for you.

When I was diagnosed with cancer, my friends/family were by my side every step of the way. They offered help, went with me to chemo, listened when I cried, brought us meals. In short, they were awesome. I had so much on my mind that I didn't think too much about what they were thinking. I wasn't tuned in to their fear for me. 
Two weeks ago, my oldest friend called to tell me she has stage 3 kidney cancer. We discussed her treatment and I asked the practical questions that cancer survivors think to ask. But once we got off the phone, my jaw hit the floor. I just sat there dumbfounded, not knowing what to do. It was odd being on that side of the diagnosis. I'm still in shock but know that she'll be okay. She has a treatment plan and a great support system. 
I'm tired of this cancer nonsense.
 
 
 
 
 
 

Hi Samantha - 
My feelings brought me to Lungevity six years ago and it was an excellent choice for me. I can come here to ask questions, vent, worry, etc. It's not that my support system wouldn't listen - they would. But they don't understand all that I've gone through. I was diagnosed 6.5 years ago (stage IV) and have been cancer free for almost 4 years. This diagnosis isn't the death sentence it once was.
If you haven't already seen it, there is a forum just for caregivers. Your family might find it useful for their questions.
 

Hi Samantha - 
My feelings brought me to Lungevity six years ago and it was an excellent choice for me. I can come here to ask questions, vent, worry, etc. It's not that my support system wouldn't listen - they would. But they don't understand all that I've gone through. I was diagnosed 6.5 years ago (stage IV) and have been cancer free for almost 4 years. This diagnosis isn't the death sentence it once was.
If you haven't already seen it, there is a forum just for caregivers. Your family might find it useful for their questions.
 

I had my 3.5 year follow up from a RUL Lobectomy.  The .5 was due to the COVID year delays.  The scan was without contrast.  Apparently their is a shortage of that too. Still NED.  Some numbness and muscle spasms on occasion.  No other issues. Lung capacity is back to what it was pre lobectomy.  I don’t visit the site much anymore but was happy to see a lot of familiar names still on here and providing support. I was sad to read of Lexi’s passing. She was very supportive to me during the lead up to and post surgery. I will always be grateful for that.   @Tom Galliyour tribute was beautiful.