My dad has stage 4 squamous cell NSCLC w/ metastis to the brain and many other organs.

[Desi]

Isn’t time a crazy concept to think about? 

10 years ago my father was diagnosed with oral squamous cell carcinoma. He fought through it for about 2 years and was cancer free! 

In May 2018 he had a cough and back pain that was diagnosed as pneumonia. After antibiotics he still had no relief. We followed up with his doctor And a ct scan was ordered, after that day it seems our whole worlds have been flipped upside down. Suspicious lesions where found. Next a pet scan. The oncologist says, “ your body is lit up like a Christmas tree” Biopsy done. Heart wrenching. Stage 4 NSCLC w/ metastasis to bones, liver, kidneys and just about everywhere else. Mri done to see if his brain was involved. 7 lesions found all smaller then 2mm. 

We where told that this is terminal and our goal is to buy time. Chemotherapy started in late may. Chemotherapy ended a session early (2 weeks ago) due to him ending up in the hospital with septis believed to have been caused from a bladder spanner he had placed since his biopsy. When they did the biopsy he retained his urine while he was under and ever since he has had a catheter or spanned in. They did  it put a catheter in while doing biopsy and he was under anesthesia longer then expected.

They did a ct scan half way through chemo in July and said with surprise everything looks to have shrunken. Woohooo! What relief. 

last week he has another ct scan and brain mri. The cancer has now metastasized further and brain lesions have multiplied to 17 with sizes of 11 x 22mm. They called and got us in right away saying they would like him to start whole brain radiation right away as well as upping his steroids. He has been fitted and starts next radiation next week.  We also are going to Dana Farber in hopes to be eligible for a clinical trial or maybe a second opinion and more options. 

We are at a loss. Any advise out there? Has anybody beaten this disease? What treatment worked for you? 

 

Symptoms include at this point: 

headaches

imbalance 

tiredness

mucus build up 

cough 

loss of appetite

memory loss

numbness in feet and hands

mustle loss right arm 

 

Thank you an advance!

Desiree

[LexieCat]

Hi, Desiree, and welcome.  I'm so sorry about your dad.  Sounds like you guys have had a lot to deal with.

I don't have any helpful experience to share (I was lucky enough to be early stage), but wanted to welcome you here.  Other members who have experience with radiation and clinical trials will be along shortly.

Hang in there--I know how hard it is to have a parent with cancer.

[Tom Galli]

Desi,

Welcome here.

How old is your dad?

I was diagnosed at 53 and am now nearing my 15 year of surviving late stage diagnosed lung cancer. I had 4 recurrences after “successful” treatments so I’m not sure anyone ever beats lung cancer. We seek no evidence of disease and I hope WBR shrinks his brain mets. 

Stay the course. 

Tom