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New to this site- specific questions about Tagrisso and Fatigue and Skin issues


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HI Everyone,

My name is Deirdre. I was diagnosed with Non Small Cell, Stage 4, EGFR in May of 2019. I am doing well on Tagrisso. I have mets to the spine and breast. I am "you". I am 50 and was diagnosed when I was 49. I have a 10 and 12 year old, boy and girl respectively.

I feel incredibly lucky to work at Johns Hopkins and be from Boston. I have great care. I had a biomarker test right away and was put on Tagrisso immediately. It is working for me. I do have a question about tagrisso side effects. Lately I am experiencing some real fatigue--having a hard time getting up in the morning, sometimes taking naps during the work day, etc. I  am also experiencing incredibly itchy skin.

 

Deirdre

 

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Hi, Deirdre, and welcome.

I'm not familiar with Tagrisso, myself (no mutations), but we do have several members on that treatment. You can find most of the relevant posts, most likely, in this forum: https://forums.lungevity.org/forum/15-nsclc-group/. In addition to the main forum on NSCLC, there are subforums for the various mutations and associated therapies.

I know side effects can change over time. I also deal with fatigue (and brain fog) from my chemo/immunotherapy. It isn't constant, but enough so I'm out on disability from my legal job with a nonprofit--just too hard to focus on a sustained basis.

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Hi Deirdre, 

Hello from me too, I was 51 at the time of my ALK diagnosis so I understand the cumulative impact of being on long term targeted therapy.  After 27 months, I have more fatigue now than I did when I started treatment.   I take a nap every day like clockwork at 2pm, anywhere from 20-60 minutes.  Getting out of bed even after a good nights sleep is always a big hump to overcome, but I have to take my meds twice a day 12 hours apart, that’s enough incentive for me to get moving. 
 

The itchy skin is definitely Tagrisso, it’s hard to find a dermatologist who understands how to manage the side effects but they are out there, just persevere.  I found a dermatologist outside of my cancer center who really had a handle on Tagrisso.  Now all the patients in my support group see her.  
 

We have Friday night Zoom meet ups where there are a couple of John’s Hopkins patients.  You might want to check it out on the Lungevity website.   
 

We’re with you all the way here.  Just let us know how we can help. 
 

Michelle

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There is a closed Facebook group Tagrisso (osimertinib) Patients and Caregivers Group where people are discussing similar Tag side effects. Some folks take Tag at night to avoid the fatigue/tiredness. Itchy skin is not uncommon either. It's easy to join if you use FB. I don't have any of those side effects on Tag. Hope you get relief soon. 

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  • 3 weeks later...

Hi D,

    I was diagnosed in Nov 2019 stage IV non small cell lung cancer. I’m on Immuno = Keytruda  and Chemo = Alimta

    All the cancer fighting drugs we take have side effects. If someone tells me them don’t have any I’m always shocked and happy for them. 
    To date her are my side effects:

    Fatigue; usually accumulative and lasts 4-5 days after infusions. What I do: sleep and rest. Can’t fight it.

     Skin rash, itchy, red, angry eczema. What I do: scratch, scratch scratch. Dermatologist said take 40 mg OTC Antihistamine. 
     OTC creams, ice to numb it, menthol gels. 
 

   Hypothyroidism: Can’t metabolize food correctly. Weight gain 25 lbs, ugh. What I do: Take levothyroxine to control.

  Muscle joint aches: What I do; Use personal TENS device

 Always look at the BIG picture. The drugs are prolonging our lives. If sleepy & itching are part of it, I deal with it best I can.

You will too my fellow warrior.

 

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