Newbie Stage IV metastatic Squamous NSCLC

[Tylalla]

I was first diagnosed with stage IIIA NSCLC Squamous in May of 2014.  I had one tumor in my left lung that was growing in to my main bronchus and was very close to my heart.  That made the tumor inoperable.  I had radiation and chemotherapy at the same time and the tumor was no longer visible by December of 2014.  In March of 2015, a small new tumor was found in my right lung and it was removed by a VATS wedge resection surgery.  I was declared in remission in May of 2015.  In November of that year, a mass was seen at the top of my right kidney during a CT scan of my chest.  Further scans were done and it was determined that I had tumors on my right kidney, the lymph node near the kidney, my right pelvis bone, and my left lung again.  A biopsy of the pelvic bone tumor showed the same type of cancer as my original tumor and I was declared state IV metastatic.  After another go round of chemotherapy treatments and a week of radiation on the pelvic bone (to alleviate pain), the lingering neuropathy from my original go around with chemo was worsened and became grade 3.  I was switched to Opdivo.  After 8 treatments, the cancer still showed progression  so gene testing was done and it was discovered that I had the EGFR+ mutation.  I was switched to Tarceva.  After 5 days of treatment, I developed a very severe rash that covered my scalp, ears, face, neck, shoulders, back, and stomach.  It also started down my arms.  (I had not been out in the sun at all once I started the drug)  I'm currently off of the Tarceva until the rash heals and then I will go back on it at a lower dose.  Hopefully it will work well and I can stop looking for the next treatment.

(This is all in the About Me section of my profile)

[Tom Galli]

Tylalla,

 

Welcome here.

Our survivor story is almost identical except I did have surgery and my right lung was removed.  Then my NSC Squamous Cell LC spread to my remaining lung.  I had back-to-back treatments with Taxol and Carboplatin and 6 months after completing each treatment cycle, the tumor returned.  I finally had a CyberKnife that dealt with the stubborn tumor.

I also had Tarceva, but this was in the early days of administration in 2005 and had a horrible rash, no worse than that, I looked like an outbreak of the worlds worst case of acne.  It was given in conjunction with Taxol and Carboplatin so I had many side effects to deal with.  Instead of putting me on a lower dose, my doc had me take the medication every other day.  That was a good decision because Tarceva was extremely expensive in those days.  

But I'm here after 12 years of surviving lung cancer.  If I can live, so can you.

Let us know how you are progressing and if you have questions, just ask.

Stay the course.

Tom