Rower 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.  

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! 

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.
😃

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!
 

Hi Chazs. I am new here as well and share your sentiment. This was exactly my feeling when I was diagnosed on July 25th. "scared to death".  I am still going through the tests, the waiting, .. and I am still awaiting treatment. This site, and the people who responded to me has helped my state of mind immensely. They are so kind, knowledgeable and supportive, it has warmed my heart and soul. Let's go through this together, eh?
I feel If one more person tells me to 'stay positive'  I will come unglued, lol...but it IS actually great advice. I am doing my best, and now have a new hope for the future. Treatment for lung cancer has come a long way. We will be OK.
Love and peace to you. xoxo

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. 

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.  

Hi Chazprincess, when I was diagnosed almost 3 years ago, the most puzzling yet valuable information my primary care doctor gave me was that lung cancer isn't an automatic death sentence anymore. Like Michelle and Lou, I am also NED after having chemo and radiation and now on a daily targeted therapy pill. 
Taking one hour or one day at a time as Michelle suggests is essential to get through this difficult time. You are not alone, and we will be here to support you throughout. 

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.  

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, 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.  

That cough.  Yeah, could be a number of related things: immunotherapy and radiation can prolong the cough. 
I did develop post chemo allergies and like Judy take a daily Claritin (Zertec made me too drowsy).  
 
Acid reflux is another common culprit that needs to be evaluated- I mix two teaspoons of organic apple cider vinegar with a tablespoon of fresh lemon juice, 8oz of water and a little bit of stevia with dinner and that took care of acid reflux and morning phlegm. 
 
All of this is a way of saying everyone responds a little differently and eventually it all gets sorted out when the symptoms are reported to the doctor.  Always important to remember it’s not complaining but explaining.  

That cough.  Yeah, could be a number of related things: immunotherapy and radiation can prolong the cough. 
I did develop post chemo allergies and like Judy take a daily Claritin (Zertec made me too drowsy).  
 
Acid reflux is another common culprit that needs to be evaluated- I mix two teaspoons of organic apple cider vinegar with a tablespoon of fresh lemon juice, 8oz of water and a little bit of stevia with dinner and that took care of acid reflux and morning phlegm. 
 
All of this is a way of saying everyone responds a little differently and eventually it all gets sorted out when the symptoms are reported to the doctor.  Always important to remember it’s not complaining but explaining.  

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
 
 

Still NED here too!   

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 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 

Yay, yay! Wow, wow! I'm thrilled to hear your results!
 

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 

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