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

[tesiepearl]

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

 

[LexieCat]

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.

[Rower Michelle]

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

[Judy M2]

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. 

[Lenny Blue]

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.

 

[Harold M]

Hi Everyone, Harold here. 77 yr old Caucasian UK male in great shape save for accidentally discovering (Xmas 2020) an EFGR lung tumour following a routine CT scan. I started treatment with Tagrisso 80mg in March 2021 and saw serious shrinkage of the main lesion by some 40% within 4 months.That was great but the side effects then started to kick in. Main problem was a serious platelet drop down from my normal 150 level to as low as 66 at one point. This worried my doctors even though I felt ok save for rashes on my legs and torso and particularly the groin area. We tried stopping dosage for up to 2 weeks, alternative days of 8o mg and various combinations to get the platelet level up to 80+.

In Aug 2021 , after a PET/CT scan showing further shrinkage of the single main tumour,we decided to use the 40mg tablet daily instead of the 80mg  I have now completed 130 continuous days of 40mg and the platelets are up to 101 and all the other side effects seem to have disappeared. 

The only question is whether 40mg is a large enough dose to effect shrinkage but so far after another recent scan it seems to be working fine.

So my theory is we all have differing tolerance levels to everything including medicine and this is one of these cases. My body could not cope with 80mg but the 40mg I do not even  notice any day. It is as if I am taking a baby aspirin ! Completely symptomless.

 

So those of you struggling with the recommended 80mg dose, perhaps ask your oncologist to consider the above case history and try 40mg..    Sane drug, same price per tablet, same easy swallow......maybe better quality of life.