Rower Michelle

Michelle,
NED is so wonderful! Enjoy....
Stay the course.
Tom

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!  
 

Yay!!  Very happy for you!!

Have you found the KRAS Kickers on Facebook and Twitter? They have an excellent organization here is their website: https://www.kraskickers.org

Have you found the KRAS Kickers on Facebook and Twitter? They have an excellent organization here is their website: https://www.kraskickers.org

Hi Barb!!!
Same for me-scans on Tuesday, coming up to the four year mark… hard to believe that most days I don’t think about lung cancer at all on some days… just carry on as best I can! 
Michelle

OPAL!!!!! 
So nice to hear that you are doing well.  We "walked" side by side through the scariest of times (plus the pandemic was rearing it's ugly head).    Yes, you are the perfect example that there is life on the other side of this.  Jersey girls are tough!!!   Love and hugs... Michelle 

Hi Barb!!!
Same for me-scans on Tuesday, coming up to the four year mark… hard to believe that most days I don’t think about lung cancer at all on some days… just carry on as best I can! 
Michelle

Hi there, 
These are excellent questions that come up frequently.  The answers vary by stage, lung cancer sub-type, and insurance.  Being that you're in Canada; the monitoring guidelines are likely designed by the Canadian National Health Service.  Your oncologist might be reluctant to talk about the reimbursement protocols, however, I think it's important to ask to see the guidelines that are published.   If you can; a second opinion is always a good idea... however it might not change the answer. 
Here in the US, there is no absolute standard and that's why so many people like us have questions.... 
I have Stage IV ALK Non Small Cell Lung Cancer with no brain mets.   I receive a chest CT with contrast twice a year; and a brain MRI and Chest/Abdomen/PelvisCT twice a year.  So every three months have some type of scan; just depends on which one.   I have an alternating schedule.  
PET scans are not typically used for routine monitoring; generally only if there is disease progression noted on the CT.  
Since brain and liver mets are most common with lung cancer; it's spot on to be concerned.  Unfortunately insurance dictates what type of care is received and when. 
Michelle 
 

Michelle-me either!  

Have you found the KRAS Kickers on Facebook and Twitter? They have an excellent organization here is their website: https://www.kraskickers.org

Hi Jack--
On occasion we've heard about people exploring the Joe Tippen protocol; but have yet to hear about anyone who actually went forward with it.  Let me know what you think about it.... I've always been curious.  

Hi there, 
These are excellent questions that come up frequently.  The answers vary by stage, lung cancer sub-type, and insurance.  Being that you're in Canada; the monitoring guidelines are likely designed by the Canadian National Health Service.  Your oncologist might be reluctant to talk about the reimbursement protocols, however, I think it's important to ask to see the guidelines that are published.   If you can; a second opinion is always a good idea... however it might not change the answer. 
Here in the US, there is no absolute standard and that's why so many people like us have questions.... 
I have Stage IV ALK Non Small Cell Lung Cancer with no brain mets.   I receive a chest CT with contrast twice a year; and a brain MRI and Chest/Abdomen/PelvisCT twice a year.  So every three months have some type of scan; just depends on which one.   I have an alternating schedule.  
PET scans are not typically used for routine monitoring; generally only if there is disease progression noted on the CT.  
Since brain and liver mets are most common with lung cancer; it's spot on to be concerned.  Unfortunately insurance dictates what type of care is received and when. 
Michelle 
 

Hi there, 
These are excellent questions that come up frequently.  The answers vary by stage, lung cancer sub-type, and insurance.  Being that you're in Canada; the monitoring guidelines are likely designed by the Canadian National Health Service.  Your oncologist might be reluctant to talk about the reimbursement protocols, however, I think it's important to ask to see the guidelines that are published.   If you can; a second opinion is always a good idea... however it might not change the answer. 
Here in the US, there is no absolute standard and that's why so many people like us have questions.... 
I have Stage IV ALK Non Small Cell Lung Cancer with no brain mets.   I receive a chest CT with contrast twice a year; and a brain MRI and Chest/Abdomen/PelvisCT twice a year.  So every three months have some type of scan; just depends on which one.   I have an alternating schedule.  
PET scans are not typically used for routine monitoring; generally only if there is disease progression noted on the CT.  
Since brain and liver mets are most common with lung cancer; it's spot on to be concerned.  Unfortunately insurance dictates what type of care is received and when. 
Michelle 
 

Glad to see all you guys doing well after infimzi give me hope for my mom!

Another CT tomorrow to see if all is still good. 2 1/2 years since last Imfinzi. 
hey Jersey girls, great to see you both still going strong. We are a tough breed. 
hugs and kisses 😘 

OPAL!!!!! 
So nice to hear that you are doing well.  We "walked" side by side through the scariest of times (plus the pandemic was rearing it's ugly head).    Yes, you are the perfect example that there is life on the other side of this.  Jersey girls are tough!!!   Love and hugs... Michelle 

Hi there, 
These are excellent questions that come up frequently.  The answers vary by stage, lung cancer sub-type, and insurance.  Being that you're in Canada; the monitoring guidelines are likely designed by the Canadian National Health Service.  Your oncologist might be reluctant to talk about the reimbursement protocols, however, I think it's important to ask to see the guidelines that are published.   If you can; a second opinion is always a good idea... however it might not change the answer. 
Here in the US, there is no absolute standard and that's why so many people like us have questions.... 
I have Stage IV ALK Non Small Cell Lung Cancer with no brain mets.   I receive a chest CT with contrast twice a year; and a brain MRI and Chest/Abdomen/PelvisCT twice a year.  So every three months have some type of scan; just depends on which one.   I have an alternating schedule.  
PET scans are not typically used for routine monitoring; generally only if there is disease progression noted on the CT.  
Since brain and liver mets are most common with lung cancer; it's spot on to be concerned.  Unfortunately insurance dictates what type of care is received and when. 
Michelle 
 

Kelvin, my story of my Durvalumab experience is likely already buried in this forum, but to summarize: I received 17 or 18 Durvalumab infusions before it was determined that I was ALK+ and IO Therapy would not help me. While the Durvlumab did not change my appetite any it certainly changed my taste. I became extremely sensitive to any spices, even salt and pepper. I was always a heavy salt user but there was about an 8-month period that I could not tolerate any on my food at all. Catsup for French fries was also out of the question as it felt like my mouth was on fire. In the end I actually gained weight. Other items were a skin rash, back, chest and legs, and a moderate level of shortness of breath and fatigue. Although not always listed in the published side effects, but the Immunotherapy Drugs have been found that they can affect and/or damage the Thyroid. My TSH levels were normal after chemo, but then after several months on Durvalumab, they went through the roof due to drug induced hypothyroidism. I have been on Thyroid hormone replacement meds ever since. My ONC believes that I will now be for the rest of my life. Recommend that your mother make sure that they monitor her TSH levels. Just based on my experience, the Durvalumab period was no worse, but not much better, than the chemo. The itching from the skin rashes were the worst side effect for me back then. Currently my Targeted Therapy Alectinib so doing its job of keeping me NED (at least for the time being). I've been it for almost 3 years now and am quickly approaching the Mean PFS duration.

Hi from me too June-
Your story is so similar to mine- I had an undiagnosed cough that went on for months with multiple physicians and treatment plans.  Two chest X-rays, two CTs, before we finally got around to the shocking diagnosis.  We hoped the biopsy would identify a fungal infection.  No one was looking for lung cancer in a competitive athlete who was 51 years old.  
 
In a few weeks I will be celebrating my 55th birthday, a milestone that I didn’t think was possible when I was diagnosed in 2018.  
 
Nothing about this disease is easy but we’re here to say you can do this.  Life will eventually settle into a new normal.  Believe it or not there will be a time when you’ll be able to say you didn’t even think about your cancer.   Brighter days are coming. 
Michelle

HI Michelle,
Thank you for the encouraging words. I certainly hope you are right! I have this fear that my treatments won't work for whatever reason. And I don't have any of the targeted mutations, so it worries me to not have that backup line of defense! But I am trying hard to stay positive.
I am very happy for you that everything is going so well! That is certainly encouraging. It's so frustrating when I look back on all the times this thing should have been caught earlier. I'm sure it was for you as well. Over 18 months ago I was complaining to my doctor about loss of stamina on the hiking trails. I was referred to a cardiologist. We did a stress test, echo, etc. and they proclaimed my heart was fine. I had a clear chest x-ray, so no one considered to look any further. I keep wondering why no one ever suggested a simple CT scan? I had no idea that you couldn't always see cancer on a chest x-ray, but surely the doctors knew that. I know I shouldn't worry about what "could have been", but it does bother me a bit. I blame myself, too, for not pushing back more. I sort of convinced myself it was just an age thing. I should have listened to my body, it was trying to tell me!
Hi Chuck,
Thank you also! I actually grew up in Mississippi and still have tons of family there. I'm from up around the Starkville area. But I lived in Gulfport for a few years way back in the 80's as a college co-op student with MS Power. Anyway, I am very glad you are doing well also. There are so many encouraging stories here and it does help a lot to hear them.
Take care all,
June
 

Hi from me too June-
Your story is so similar to mine- I had an undiagnosed cough that went on for months with multiple physicians and treatment plans.  Two chest X-rays, two CTs, before we finally got around to the shocking diagnosis.  We hoped the biopsy would identify a fungal infection.  No one was looking for lung cancer in a competitive athlete who was 51 years old.  
 
In a few weeks I will be celebrating my 55th birthday, a milestone that I didn’t think was possible when I was diagnosed in 2018.  
 
Nothing about this disease is easy but we’re here to say you can do this.  Life will eventually settle into a new normal.  Believe it or not there will be a time when you’ll be able to say you didn’t even think about your cancer.   Brighter days are coming. 
Michelle

Hi from me too June-
Your story is so similar to mine- I had an undiagnosed cough that went on for months with multiple physicians and treatment plans.  Two chest X-rays, two CTs, before we finally got around to the shocking diagnosis.  We hoped the biopsy would identify a fungal infection.  No one was looking for lung cancer in a competitive athlete who was 51 years old.  
 
In a few weeks I will be celebrating my 55th birthday, a milestone that I didn’t think was possible when I was diagnosed in 2018.  
 
Nothing about this disease is easy but we’re here to say you can do this.  Life will eventually settle into a new normal.  Believe it or not there will be a time when you’ll be able to say you didn’t even think about your cancer.   Brighter days are coming. 
Michelle

Hi from me too June-
Your story is so similar to mine- I had an undiagnosed cough that went on for months with multiple physicians and treatment plans.  Two chest X-rays, two CTs, before we finally got around to the shocking diagnosis.  We hoped the biopsy would identify a fungal infection.  No one was looking for lung cancer in a competitive athlete who was 51 years old.  
 
In a few weeks I will be celebrating my 55th birthday, a milestone that I didn’t think was possible when I was diagnosed in 2018.  
 
Nothing about this disease is easy but we’re here to say you can do this.  Life will eventually settle into a new normal.  Believe it or not there will be a time when you’ll be able to say you didn’t even think about your cancer.   Brighter days are coming. 
Michelle

Hi from me too June-
Your story is so similar to mine- I had an undiagnosed cough that went on for months with multiple physicians and treatment plans.  Two chest X-rays, two CTs, before we finally got around to the shocking diagnosis.  We hoped the biopsy would identify a fungal infection.  No one was looking for lung cancer in a competitive athlete who was 51 years old.  
 
In a few weeks I will be celebrating my 55th birthday, a milestone that I didn’t think was possible when I was diagnosed in 2018.  
 
Nothing about this disease is easy but we’re here to say you can do this.  Life will eventually settle into a new normal.  Believe it or not there will be a time when you’ll be able to say you didn’t even think about your cancer.   Brighter days are coming. 
Michelle