Introduction

[Cordelia]

Greetings! 

I'm Cordelia, I'm 57 and I was diagnosed with stage IV Adenocarcinoma Sept 15th of this year.  I just started Tagrisso 3 days ago as I have an EGFR exon 19 mutation.  This was a huge shock to me, as I never smoked and am very active. I'd been short of breath for about 6 months though and attributed it to Covid weight gain and reflux.  In July 2021 I insisted on a chest xray, which led to a CT scan, then a biopsy.  My cancer diagnosis was actually on the 1st of September, in a phone call from the interventional radiologist.  The staging was complete on the 15th, and I have a wonderful oncologist and support group.  

I posted my story on caringbridge.org,  it has been helpful to have friends and family read the updates there so I don't have to keep repeating myself. I'm open to any suggestions for living with this.  I have real hope from listening to and reading survivor stories!

 

[Judy M2]

Hi Cordelia, good for you being your own advocate! I am also Exon 19 and have taken Tagrisso since March 2020. My Stage IIIB lung cancer was misdiagnosed for a few months too. And I also have a Caring Bridge site that has been very useful updating family and friends since my shocking diagnosis in October 2019.

I've found Tagrisso to be very tolerable with manageable side effects that come and go. There's a lot of discussion about when best to take it. I take mine at bedtime. 

There are a few closed LUNGevity Facebook groups you might find helpful. There are stories of survivorship there, plus they are great resources for information--particularly new research that is constantly being published. 

Tagrisso (osimertinib) Patients & Caregivers Group 

LUNGevity Targeted Therapies Group 

LUNGevity EGFR Group

LUNGevity EGFR Resisters Lung Cancer Patients Group 

I had chemo and radiation before starting Tagrisso, and any side effects of Tag are easier than those treatments. I am happy to say I am now NED (No Evidence of Disease) since April of this year. Best of luck on this great drug! 

[Rower Michelle]

Hi Cordelia, 

Hello from me as well.   Like you I was a 51 year old never smoker at the time of diagnosis, which led to a delayed diagnosis while we ruled out allergies and acid reflux.  I also had weight gain in the year prior to my diagnosis which was attributed to menopause, as pneumonia set in, I dropped almost 15lbs in two weeks.   I also have a mutation, ALK Positive and started targeted therapy three years ago.    

Judy has provided you with excellent resources, and you're very fortunate to have a LC support group to attend.  Very few cancer centers actually have a LC support group, but that's starting to change now too.   

I thought about starting a Caring Bridge when I was very diagnosed, but was too ill at the time to set one up.  My husband was in a state of shock, not functioning and my family is out of state.  Looking back I'm glad I didn't set it up, because after the first few months, there really hasn't been much (thankfully) to update.  

I'm glad you found this form as it's a great source of support for everyone.... just when you think you might be losing your mind, you might read something and say, a-ha, this is really "normal".    Welcome to the group! 

Michelle 

 

 

 

 

 

[Cordelia]

32 minutes ago, Rower Michelle said:

Hi Cordelia, 

Hello from me as well.   Like you I was a 51 year old never smoker at the time of diagnosis, which led to a delayed diagnosis while we ruled out allergies and acid reflux.  I also had weight gain in the year prior to my diagnosis which was attributed to menopause, as pneumonia set in, I dropped almost 15lbs in two weeks.   I also have a mutation, ALK Positive and started targeted therapy three years ago.    

Judy has provided you with excellent resources, and you're very fortunate to have a LC support group to attend.  Very few cancer centers actually have a LC support group, but that's starting to change now too.   

I thought about starting a Caring Bridge when I was very diagnosed, but was too ill at the time to set one up.  My husband was in a state of shock, not functioning and my family is out of state.  Looking back I'm glad I didn't set it up, because after the first few months, there really hasn't been much (thankfully) to update.  

I'm glad you found this form as it's a great source of support for everyone.... just when you think you might be losing your mind, you might read something and say, a-ha, this is really "normal".    Welcome to the group! 

Michelle 

 

Thanks so much Michelle!  I'm hoping my caringbridge site will be quiet as well!!!  To clarify, my support group has been friends, colleagues and family.  I am planning to attend a support group at my cancer center also. 

It is encouraging to hear you've been on targeted therapy for 3 years.  Have you had any issues with insurance covering it?  Tagrisso is around $16 K per month, and my insurance company has been very UN helpful so far!  We're waiting for the pre-authorization while I take samples.  I did see Astra Zeneca has help for insured patients, so I'm not too worried. 

Cordelia

 

 

 

 

[Cordelia]

11 hours ago, Judy M2 said:

Hi Cordelia, good for you being your own advocate! I am also Exon 19 and have taken Tagrisso since March 2020. My Stage IIIB lung cancer was misdiagnosed for a few months too. And I also have a Caring Bridge site that has been very useful updating family and friends since my shocking diagnosis in October 2019.

I

Thanks so much Judy!  It's encouraging to hear you've been on Tagrisso for about 18 months and tolerated it.  Thanks also for the facebook group info. I've requested to join one of those!   I am glad I found this site, it's been a great source of hope. 

Cordelia

 

[Rower Michelle]

Hi Cordelia. 

Health insurance.... it's like hand to hand combat.  I didn't have any issues with the Alectinib getting approval and I also receive copay assistance from the Pharma company as well.   Your doctor can contact the insurance company and ask for what's referred to as "an expedited review".   Now is a good time to learn more about your insurance, especially if your company has outsourced it's cancer benefit management to a company called EviCore (we refer to it here by another name).    Don't be afraid to get the human resources department involved if things are not moving quickly.  They are often an untapped resource.   The drug will get approved, it always does, just not at the pace we would expect it to so sometimes you need to push/shove the system along. 

Michelle 

[Tom Galli]

Cordelia,

Welcome here.

I have fond memories of Salt Lake City, once stationed at Ft. Douglas. It still marvel how quickly one could go from urban to wilderness. I recall my early morning jaunts running east up hill, past the WWII prisoner of war barracks, and then into unspoiled wilderness. That part of the fort was so remote, wild animals would just stand there and watch the crazy Army officer run up hill!

Unfortunately, we also share a diagnosis. Mine was squamous cell non small cell lung cancer and in February 2004. I've had every treatment for the disease except immunotherapy and have 5 recurrences during my treatment history. Running up the treatment hill is no fun, but many of us also get to experience running down hill. I do hope you are among the many.

Stay the course.

Tom

[Cordelia]

Thanks Tom, my dad was stationed at Fort Douglas by the Navy, which seems odd!  That's how I went to SLC. I love the mountains so moved back here 15 years ago.  

I'm glad that you're still running up the treatment hill.  And getting to experience downhill as well.  Take care! 

Cordelia

[Cordelia]

1 hour ago, Rower Michelle said:

Hi Cordelia. 

Health insurance.... it's like hand to hand combat.  I didn't have any issues with the Alectinib getting approval and I also receive copay assistance from the Pharma company as well.   Your doctor can contact the insurance company and ask for what's referred to as "an expedited review".   Now is a good time to learn more about your insurance, especially if your company has outsourced it's cancer benefit management to a company called EviCore (we refer to it here by another name).    Don't be afraid to get the human resources department involved if things are not moving quickly.  They are often an untapped resource.   The drug will get approved, it always does, just not at the pace we would expect it to so sometimes you need to push/shove the system along. 

Michelle 

Thanks Michelle,

Hee hee I can imagine the name of Evicore-  they have been reviewing everything my doctor orders and sending me rejection letters before I've even had the test it seems.   Human resources is a great idea.  It would be nice to be able to contact Evicore directly,  as I can't seem to get a person at Cigna (my insurance company). 

Cordelia

[Rower Michelle]

HA! I knew it!  We call it EvilCore or NeverCore.  They have a MO of delay or deny almost everything.  Cigna knows this and they don’t seem to care so the only ammunition we have is the benefit manager at Human Resources make ALOT of noise.  
 

EvilCore denied my PET and initial chemo.  The rational for chemo denial was “ matter of convenience”.   Ridiculous.  They also don’t have board certified oncologists reviewing the requests either.  If your HR department can’t deal with it each state has a Department of Insurance unit under the Attorney General’s Office of Consumer Protection.   Call ‘em if you need to.   Unfortunately it’s the only way to get NeverCore to move…. 
 

I also wrote a letter to the editor of the Wall Street Journal which was published…. So writing the local newspaper is also useful.  
 

Right @Lisa Haines?!! 

[Lisa Haines]

On 9/23/2021 at 1:34 PM, Rower Michelle said:

HA! I knew it!  We call it EvilCore or NeverCore.  They have a MO of delay or deny almost everything.  Cigna knows this and they don’t seem to care so the only ammunition we have is the benefit manager at Human Resources make ALOT of noise.  
 

EvilCore denied my PET and initial chemo.  The rational for chemo denial was “ matter of convenience”.   Ridiculous.  They also don’t have board certified oncologists reviewing the requests either.  If your HR department can’t deal with it each state has a Department of Insurance unit under the Attorney General’s Office of Consumer Protection.   Call ‘em if you need to.   Unfortunately it’s the only way to get NeverCore to move…. 
 

I also wrote a letter to the editor of the Wall Street Journal which was published…. So writing the local newspaper is also useful.  
 

Right @Lisa Haines?!! 

Oh My Gosh!  "Evil Core" strikes again!  They are ruthless and are absolutely horrible to deal with.  I swear they love to add extra stress and upset into our lives.  PLEASE do not give up and fight for what you deserve and should have.   I can't begin to tell you how many people have had this company deny claims and services.  But, if you and your care team are persistent, MOST case will quickly be overturned and you'll be approved.    When they denied my Hip Surgery (just days before I was having it and after I had completed all my preop testing), I was most upset.    We all quickly got on phone and starting complaining to our doctors and insurance carriers.  It was a really pain in the butt, but I was NOT about to cancel my surgery and I knew they were playing some "game" trying to deny it.     Turned out, they had not even read my doctors notes correctly and had denied a totally different procedure than what I was having done?    My surgeon had given them the correct information and the correct diagnosis codes, but they somehow "read it wrong" and instead of double-checking it was denied?      They make mistakes like this often and and it comes back on the patients, which is awful and sickening.    

I am so lucky that I'm not on Medicare and will NEVER have to deal with them again, but I do sympathize with you and countless others who have to deal with them.  I HOPE you will fight and do whatever is needed to get the care you need !  Yes, call them and make sure your Oncology team is on top of it too, most doctors know of them.  We read a long Twitter feed where several docs in various fields were all complaining about these crazy denials.   They are now well known and it needs to be stopped !   

Please se sure to let us know how it goes!   I wish you the very best!  

[Lisa Haines]

Hi Cordelia,

  Welcome and Happy your found this wonderful forum and LUNGevity.  You'll find lots of amazing support here as well as in the EGRF Groups!   

   I am sorry to hear that you are already having trouble with denials and "EvilCORE" and hope the information that Michelle and I have shared will help you get these issues resolved quickly.    Believe me you are not alone in dealing with this, nonetheless it's terrrible and not something someone recently diagnosed needs to deal with.  I wish you the very best and hope by now it's been resolved or will be soon.

 I'm a Stage IV NSCLC Survivor and I have the KRAS 12v Mutation and we do not have a drug that can target it, so I had standard treatments and did excellent with Immunotherapy.  To read more of my story you can click on my name and read my bio.  I'm happily now NED (No Evidence of Disease) and going on 7 years of living with Stage IV

  I hope you'll be very pleased with the support this group can offer.   Please check out the LUNGevity Virtual Zoom Meet Ups which are hosted several times each week.   For more information and to sign up  -- go to this link https://www.lungevity.org/for-patients-caregivers/support-services/virtual-meetups

   Best wishes,

     Lisa

[Cordelia]

Thanks so much Lisa,  for the warm welcome! It’s nice to hear of many years survival! I’m happy for you. Evicore did approve my Tagrisso! I was shocked to say the least.

Take care, 

Cordelia