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KFrank

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I was diagnosed with stage four NSCLC EFGR mutation exon 19, in April.  There is a large tumor in my upper left lung and cancer cells were in the lining of my pleural sac. I was completely shocked to be told I had lung cancer at 49 years old. I have a wonderful treatment team, I had one round of chemo with keytruda, they chryo froze the cancer cells attached to the plural lining and put in a drain (which stayed in for 3 months), but when the genomic testing came back with the mutation they started me on Tagrisso.  The Tagrisso shrunk my tumor in half within the first 2 months,  but it also was found to inflame my liver.  Unfortunately I had to stop taking Tagrisso, went on steroids to reduce my liver enzyme levels and now I am taking Tarceva.  

I am so worried that the Tarceva is going to effect my liver the way Tagrisso did.  I get rescanned next week and have found myself so stressed out over what will be found, I can barely function.  My question is, what if this treatment doesn’t work, or if I can’t take it because it attacks my liver, what next?   

Any advice on how to manage the stress of this diagnosis and what other treatments people have found is welcome!

 

 

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Hi KFrank and welcome. I'm sorry to hear about  your diagnosis, but glad you found us. I don't have any experience with Tagrisso or Tarceva, but I know there are members on this forum who have, and I hope they'll respond with their experience. You might post something with a title like " Tagrisso experience, anyone?". 

Scan time is really stressful for most of us. It's possible, in fact common, for someone (me for example) to be pretty calm and matter of fact and hopeful most of the time and then get blitzed with anxiety when it's time for a scan,  and even more anxious and pessimistic  while waiting for results. I know that my saying this won't make you any less worried, but at least you'll know that you're not alone. I've had three different primary cancers over the last 11 years, so I've had a lot of scans.  I have found that for me it is a little easier now than it used to be. At least I can tell myself that this is "just" scanxiety,  that I've been through it before and I'm still alive.

I suggest you ask your doctor your "what if" questions. It's perfectly normal to expect to get that kind of information from him/her.

Hang in there!

Bridget O

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Thank you so much for the advice and encouragement.  I’m glad I found this sight, my doctor suggested joining a support group, and it will be so helpful to communicate with others who are or have gone through the same experiences. 

Thanks again!

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Hi KFrank, I'm sorry to hear about your diagnosis but so glad you found this group.  I just wanted to give you a link to support services offered by LUNGevity:  https://lungevity.org/for-patients-caregivers/support-services  There is a HELPLine to connect with an oncologist social worker, LifeLine which matches you with a peer mentor and much more.

Please post away and we are here to support you!

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Scanxiety is the worst. Like Bridget, I'm pretty positive most of the time. But scan week? I'm a nervous mess! 

As for your treatment, there are so many options available today that weren't available 5 years ago. So if your current treatment creates the same liver issues, there are more options out there. Hang in there and let us know how we can help.

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Hi there & Welcome! 
I was also diagnosed at Stage IV with the ALK driver mutation at the age of 51.  When I started targeted therapy (alectinib), the liver enzymes went bezerk.  I was having weekly labs.  I sought  treatment with an Integrative Oncologist who did acupuncture to my liver & changed my diet to liver friendly foods like organic beet juice.  You’re not alone here, we all understand. 
The scans are the most anxiety provoking experience for me too.  I started to spend time at the spa- myofacial release message, pedicures, hair appointments (never go into a scan with bad hair). Some of this can add up so I negotiated discounts in exchange for advance bookings.  
Give us a shout out & don’t try to do this alone.  It’s a great family to have here because we get it 

Glad you found us!

Michelle

 

 

 

 

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Managing the stress is hard for all so do not feel alone;  all members on this sight DO understand what you are going through and it is tough.  For dealing with my stage 4 NSCLC with brain mets diagnosed April 2019 for which I have been on the every 3-week Keytruda plan and tolerating it well, I go with the old cliche "one day at a time."  I also try hard to focus on chores that I need to accomplish daily, which helps keep my mind off the cancer aspect of my life so it does not consume me.  We are all here for you and you will get through this!  Take care of yourself.  All the best.  Susan Rae

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