My Story

[Wyde1340]

I was dx with Stage 4 non-small cell squamous lung cancer in December 2018 (on my birthday) at 47 years old.  My only symptom was a swollen lymph node in my neck that didn't go away after a month. Blood work only showed a slightly elevated calcium level (should be between 8.6 and 10.4mg - I was 10.6)...normally wouldn't raise the alarm. However, I had a history of smoking, so my doc suggested a CT scan. The CT scan was from my neck to top of lungs. It showed a mass in my right lung.  Doc then sent me for a biopsy of the lymph node & it showed NSCLC squamous.  Next up, PET scan...was only in my lung and lymph mode.

Onco put me on Keytruda because my PDL1 was 100%.  Oh, the side effects were terrible.  I lost 30 lbs and believed that I was close to death.  At the end of 3 months, my onco did another PET scan.  Now, my cancer was on my skull, shoulder, lymph nodes, adrenal glands,  ovaries,  hips,  femurs and foot. By this time, he had gotten back my biomarker testing. I had MET amplification with 3 others, but MET amplification was high, so he put me on Crizotinib (Xalkori).  

During this time, I had radiation on my hips, femurs and foot. In the middle of radiation, I broke my femur (left) and foot (right).  I was unable to have my femur repaired for 3 weeks.  There were no painkillers to help this pain.  I didn't take a shower for 3 months, because I couldn't get upstairs. I finally had my femur fixed (had rod installed) and foot was in a boot.  

Crizotinib started working within a week. The lump on my skull went away.  I could breathe better and my lymph node was gone.  I had to cut down from 2 tablets a day to one, as I did have some side effects.

I had SBRT to my lung lesion and had no side effects.  It shrunk my lung lesion.

In 2020, my rod in my femur failed and I had to have a partial hip replacement.   I'm happy to say, I have no pain anymore & wish I would have been given that option in the beginning.  
I also had cryoablation done on my adrenal gland.

As of today, I am 22+ months stable and I'm still on Crizotinib.   I only light up some in my lung and one adrenal gland. They both may still be residual inflammation from the SBRT and cryoablation. 

In between these past 2 years, I had pneumonia once, pain in adrenals and c-diff which required a weeks stay in the hospital.
 
So, hold on to hope!! Get a great onco and team (preferably a bigger university hospital or cancer only center).  Do as much research as you can and advocate for yourself!!

[Tom Galli]

Wyde,

Welcome here. I'm a squamous cell guy also and it is wonderful to hear Xalkori is working for you. Stable is grand and I do hope shortly that your stable soon migrates to no evidence of disease (NED).

Hold on to hope, indeed. Those are wonderful watch words.

Stay the course.

Tom

[TJM]

Man. What a ride you've been on. So happy your stable now.

Hopefully your living life well.

Peace

Tom

[Wyde1340]

Oh, I am... Its amazing to see how far I've come...I really thought April of 2019 was the end of me.  

[LexieCat]

Hokey smokes. Stories like this make me realize how lucky I've been in the treatment department. I've tolerated the (rather tolerable) treatments I've had so far pretty well. We'll see how I make out when they bring out the BIG GUNS in a couple of weeks. For that, fortunately, I'll already be in the hospital--either on the oncology ward or in ICU. But, as I keep reminding myself, I can put up with anything for a couple of weeks.

So glad to hear you're doing so well now, Wyde!