58yo 2 months into diagnosis of stage 4 NSCLC

[Sabin]

1. Any insights into how to control thoughts of 'Is this my last...Mother's Day, birthday, etc...
2. Any advice on dietary changes to help with GI side effects of Tagrisso

[Tom Galli]

Sabin,

Do I have insight about controlling one's thoughts about life duration? I went down that path during treatment and it caused a deep depression. So I compounded my problem set. Now I just focus on living in the day. I neither morn the past nor worry about the future. I have some control about actions and activity each day and that is the extent of my focus. But, I didn't magically develop this narrow focus. I had therapeutic help. One of the benefits of this site is to learn from other's experience. My experience suggests you've got enough to worry about with treatment and side effects. Adding an uncertain and unknowable future to that load was too much for me.

What are your GI side effects? I had a similar medication called Tarceva during my 4th line therapy. My side effects were a horrible case of face, head and neck acne and diarrhea. There was nothing I could do about the former, but I reduced the GI distress by starting my day with a bowl of plain steamed rice. I also used medication but medication alone didn't help. The rice worked but ensure it is not the "converted" type and for me, it had to be the first thing I ate.  

Stay the course.

Tom

[LouT]

Sabin,

When I was first diagnosed with Lung Cancer (Feb 2019), I believed the end had come.  In my family, almost everybody on my mother's side (including my mother and father) died of cancer and for a few specifically LC.  When diagnosed I was living with my wife who had advanced dementia and I was a 24/7 caregiver.  Two of my three kids lived in other states and I determined that I didn't have much longer to live so I needed to plan for "the end".  I still had two months of tests before my diagnostic process would be completed, but for me I couldn't see anything but death.  

Then I came across this site and I was embraced beyond what I expected.  Others shared their stories of diagnosis, treatment and survival.  Some for months, others for years , and even others for more than a decade since diagnosis.  They answered my questions, encouraged me, and had me so prepared for my surgery and follow up treatment that I felt more ready than any other time in my life.  

My focus changed, rather than centering my thoughts about dying I began thinking about living.  Prior to my surgery, (in May 2019), I increased my workouts to better prepare my body to heal and I started thinking about what to do with my future rather than seeing nothing but an oncoming disaster.  It dawned on my that to waste the life I wanted to continue so much on worry and things outside my control would never let me enjoy whatever life I had left.  

I can tell you that even today I'm aware that this is a disease of high recurrence and "Dr Google" survival stats are terrible (also inaccurate for more reasons than I will go into here), but my choice was to live every day until I can't do it anymore.  I support a number of varied groups and contribute to the forums here on Lungevity.  I cherish my friends and family more, write music, read books, and allow life to unfold day by day.  

I can only say that with the help of folks here, support of my medical team, and a change of mindset; my life became a wonderful gift that I will enjoy each and every day.  I certainly understand your feelings and won't ever diminish them, but I am here to say that there is "life after cancer" and I hope you are able to live it fully and with joy.

Lou 

[Judy M2]

First, I recommend joining the Tagrisso (osimertinib) Patients & Caregivers Group on Facebook:

https://www.facebook.com/groups/2098822473719352/?ref=share

The members have discussed all of the Tagrisso side effects, including GI. Some people find that dairy gives them problems. I have Tagrisso side effects other than GI: splitting nails, nasal allergies and itchy rash that comes and goes. All are manageable. 

You'll also find lots of folks who are Stage IV and living life. I'm Stage IIIB, diagnosed in October 2019. Had chemo and radiation first before starting Tag in March 2020. I've had No Evidence of Disease since April 2021. 

I had those dire thoughts when I was first diagnosed too. I've learned to live one day at a time, especially since no one can ever know how long their life will be. I'm grateful for every day. 

[Mamma Om]

Hi Sabin, I welcome you to our club, the one no one wants to be in. But here you will find stories of hope & healing. My LC journey began as my 4th cancer diagnosis over 18 years. There was so much cancer on both sides of my family that my 1st diagnosis of breast cancer didn't even surprise me. I had surgery, chemo & radiation. I found the love & caring of friends, family, neighbors, nurses & Doctors to be astonishing. Twelve years later, I was also not so surprised to learn I had breast cancer in the other breast. That one only required 2 surgeries. The 3rd time it did surprise me. I had never heard of thyroid cancer & by now I was feeling like, "Go pick on somebody else.". I had surgery to remove the thyroid &  radioiodine therapy and began daily thyroid pills. Three years later I was diagnosed with lung cancer, had a CT guided biopsy, PET scan,and more.  When the right lower lobe was removed and sent to pathology, a 2nd tumor was found and diagnosed as small cell. Now I was told I would need rigorous chemo & radiation.  On the very day I was to start treatment my Oncologist told me she was doubtful of my diagnosis & took my case to the weekly tumor board at the Cancer Center. That bunch of educated, dedicated, caring Doctors determined the 2nd tumor was not SCLC but a rare neuroendocrine carcinoid. All the treatment I would need is the surgery I already had. Healed from surgery quickly, and 3 years later no evidence of disease. Hang in there. LC is not a death sentence.

[WalkingHorse]

17 hours ago, Mamma Om said:

On the very day I was to start treatment my Oncologist told me she was doubtful of my diagnosis & took my case to the weekly tumor board at the Cancer Center. That bunch of educated, dedicated, caring Doctors determined the 2nd tumor was not SCLC but a rare neuroendocrine carcinoid.

Sorry to intrude on this thread but WoW. That just goes to show that what a difference a good doc (diagnostician) makes.  Your doc has good instincts. Same for the tumor board.