Jump to content
Kathy COS

Newly Diagnosed Stage 4 Adenocarcinoma EGFR L858R

Recommended Posts

Hi, I'm new here, just diagnosed the first of May and started Tagrisso May 24th.  Stage 4 Adenocarcinoma Lung Cancer that's spread to my liver (4 lesions), femur, brain (small lesion that was radiated so had to stop Tagrisso for 3 days), stomach lining, etc.  Last week, I had swelling of 3 lymph nodes in my neck so not sure what that means.  I will have my 4th thoracentesis (chest fluid drain) this Thursday and my next CT scan will be July 22.  Age 66.  It started with a cough that wouldn't go away last August, then hives off and on for 4 months.  Severe stomach and right side pain which I first thought was from Prednisone for hives.  Then requested endoscopy (negative) and then I requested a CT scan which showed the pleural effusion, and liver/pelvic lymph nodes, other metastases.  Pet scan showed the lung cancer.  Luckily, I have the EGFR mutation but I think the L858R is rarer.  Anyone else have that mutation?  I also have a high PD-L1 and highly positive p53, CK7, TTF-1, and NAPSIN-A if anyone knows how that affects the Tagrisso treatment?  I'm not afraid of knowing the truth so any information is welcome.  I'm glad to be a part of this support group.  Kathy

 

Share this post


Link to post
Share on other sites

Hi Kathy,

Glad you found us , gosh, you’ve been through the mill these last few months. 

While I do not have the EGFR driver mutation, I have the ALK Positive mutation. I sort of clump all the “mutants” into one bucket as driver mutations are very rare: 90% are diagnosed at Stage IV, most of us were healthy, and had a prolonged period of misdiagnosis. Lung Cancer isn’t on the radar in the primary care setting. 

I see you’re in Colorado—Denver has some big dog researchers, specializing in driver mutations. If you haven’t already, it’s worth seeking a consultation.     Tagrisso is the first line therapy however, it’s not unheard of to receive a combo of chemo/immunotherapy.   There are some mysteries the researchers are working through in driver mutations, for some unknown reason, immunotherapy as a single agent isn’t effective even with a high PDL-1. There’s a TON of research in this area, EGFR has something like 900 clinical trials.  There’s been more progress in the last three years than the last thirty.  

I think the key to managing this is being an advocate and understanding as much as you can about your rare mutation. It’s impossible for the docs to keep up with the emerging science.  There’s several EGFR peeps here and a robust community on Facebook where you might find some others.  

Another resource is the GO2FOUNDATION, (formerly the Bonnie J Addairo Foundation). They have national access and might be able to help find your other peers and to the leading experts in your sub mutation. 

The EGFR survivor guide is by Diana Lindsay, “ Something More Than Hope.”  Diana is a long Term Stage IV survivor. In her book she recommends a holistic treatment approach.  

Let us know how we can help support you. We’re here for you! 

Michelle 

Share this post


Link to post
Share on other sites

Thank you for your reply Michelle.  I see you're in OP - I used to live in Olathe.  I'm familiar with Dr. Camidge, in Denver but my insurance wouldn't allow me to go out of the area.  However, my oncologist said they sometimes consult with him.  I will definitely check out the book you mentioned.  Take care.

Share this post


Link to post
Share on other sites

Hi Kathy,

We’re practically neighbors-  I’m treated at KU for now. My onc has a “big” ALK practice- all four of us. 

Our plan is to see Dr Camidge if the plan gets tricky. I know he does remote second opinions for a fee when insurance doesn’t cover, as I recall they started at $750 depending on the type of information reviewed.  We were prepared to pay this fee given the University’s expertise in driver mutations. Insurance is terrible! Did you consider filing an appeal with the insurance company?  Dr Camidge  as you know is one of the world experts. Sometimes insurance companies will make an exception. It might be worth a shot. 

Michelle

Share this post


Link to post
Share on other sites

It is true that there's not a pulmonary lung cancer specialist in Colorado Springs - to my knowledge so if I need to, I can try that angle.  When I first thought I had ovarian cancer from first CT scan, I began watching youtube videos and several women mentioned that Dr. Camidge had helped them so much.  I found his name and actually made an appointment with him initially, but hated to pay the $700 plus fee and I couldn't get an appointment until about 3 weeks later.  My friend I met here in the Springs through a support group several weeks ago, goes to him and she is doing well (has different EGFR mutation), first diagnosed almost 4 years ago.  I actually printed off info on Tagrisso, not knowing that it was only for certain mutations.  I then saw that he had written a section of a book/pamphlet on lung cancer. I was happy that when I mentioned his name to my oncologist here at UCHealth (University of Colorado Health), she was familiar with him and said that sometimes they consult with him.  I was first told I would do immunotherapy because of the high PD-L1 but then final EGFR test came in so that was much better news and I'm glad I was able to take the Tagrisso instead.  Later, Kathy

Share this post


Link to post
Share on other sites

I love the Springs! My nephew is an instructor at USFA, we just got back from a short visit last month.  I can’t believe I hiked Eagles Peak last summer, coughing & wheezing the whole way up. Doc thought it was altitude!! 

All my EGFR friends are doing great on Tagrisso.  Pretty soon you’ll start to feel better.  Keep us posted.  

Michelle 

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


×
×
  • Create New...