Any long term survivors of stage IIIb or stage IV NSCLC?

He was diagnosed Apr 20/14 (squamous stage 3b as well) and given less than 8 months to live. Instead 5 months later he was declared NED - no evidence of disease. He remains that way 5 years later and was just discharged from his oncologicist. I know of severeal people now that were stage 4 but thanks to immunotherapy are now NED. One guy I know with stage 4 has been stage 4 for nearly 15 years.

Did you know there is immunotherapy for squamous lung cancer now? If it comes back it does not necessarily mean chemo and radiation again!

The stats you see are based on the old treatments from 10 or even 15 yrs ago so they are useless now - don't even read them.

There is more than just a bit of hope these days. There is lots and it is growing by the day.

jorola said:

My hubby is now 5 yrs NED - had stage 3b

He was diagnosed Apr 20/14 (squamous stage 3b as well) and given less than 8 months to live. Instead 5 months later he was declared NED - no evidence of disease. He remains that way 5 years later and was just discharged from his oncologicist. I know of severeal people now that were stage 4 but thanks to immunotherapy are now NED. One guy I know with stage 4 has been stage 4 for nearly 15 years.

Did you know there is immunotherapy for squamous lung cancer now? If it comes back it does not necessarily mean chemo and radiation again!

The stats you see are based on the old treatments from 10 or even 15 yrs ago so they are useless now - don't even read them.

There is more than just a bit of hope these days. There is lots and it is growing by the day.

Thank you for posting this. I have metastatic small cell lung cancer that I thought meant I had about a year to live. Recently I realized that possibly my cancer might be managed as a chronic disesse. I was put on immunotherapy and was told it is used for all forms of NSCLC and now SCLC. Best of luck.

jorola said:

My hubby is now 5 yrs NED - had stage 3b

He was diagnosed Apr 20/14 (squamous stage 3b as well) and given less than 8 months to live. Instead 5 months later he was declared NED - no evidence of disease. He remains that way 5 years later and was just discharged from his oncologicist. I know of severeal people now that were stage 4 but thanks to immunotherapy are now NED. One guy I know with stage 4 has been stage 4 for nearly 15 years.

Did you know there is immunotherapy for squamous lung cancer now? If it comes back it does not necessarily mean chemo and radiation again!

The stats you see are based on the old treatments from 10 or even 15 yrs ago so they are useless now - don't even read them.

There is more than just a bit of hope these days. There is lots and it is growing by the day.

Hello may I hear more of your story? Google survivor rates are extremley low and I am very scared

sarabb said:

NED/ jorola

Hello may I hear more of your story? Google survivor rates are extremley low and I am very scared

 

 

Hi Sarabb, sorry i was very busy and did not check the form for a while. I am not sure what else to say about my hubby...squamous stage 3b, 36 treatments of radiation and 28 rounds of cisplatin and etoposide. He was 40 yrs old. He does have sever peripheral arterial disease (no femoral artery in his left leg) but otherwise very healthy so they nailed him with the highest chemo and radiation doses as they could dish out. He was diagnosed on April 20/14 and by Christmas that year he was NED. He has remained NED since then. If you have specific questions please let me know.

jodie

jorola said:

My hubby is now 5 yrs NED - had stage 3b

He was diagnosed Apr 20/14 (squamous stage 3b as well) and given less than 8 months to live. Instead 5 months later he was declared NED - no evidence of disease. He remains that way 5 years later and was just discharged from his oncologicist. I know of severeal people now that were stage 4 but thanks to immunotherapy are now NED. One guy I know with stage 4 has been stage 4 for nearly 15 years.

Did you know there is immunotherapy for squamous lung cancer now? If it comes back it does not necessarily mean chemo and radiation again!

The stats you see are based on the old treatments from 10 or even 15 yrs ago so they are useless now - don't even read them.

There is more than just a bit of hope these days. There is lots and it is growing by the day.

Jorola,

Can you please name the Immunotherapy drugs your husband took and whether they were part of clinical trials? My mom is Stage 4 and in rough shape, non of the treatments she undergone have helped her. I'm trying everything I can to take the pain away.

Thank you.

I have had robot surgery and radiation and chemo.  doing ct scans now. when I ask what is next I dont seem to get a straight answer, is that normal

1/2 of my liver removed 2 weeks ago.  Still constipated and in severe pain.  Surgeon thinks pain from stopped up bowel but nothing prescribed has worked.  ?  Still need oxy to manage pain .  Anyone else with same symptoms?

My husband, 47yr old, was diagnosed with Stage 3B Squamous Cell Carcinoma of the lung in November 2020.  He has a tumor in trachea and mass in left lung and in one lymph node.  Right lung clear, no other trace in brain, liver or other organs. He had fully collapsed lung, and now has stint in lower lobe.  18% breathing capacity before treatment.  Upper LL lobe still collapsed.  He was also diagnosed with a rare ZZ Pheno type Antitrypsin deficiency (genetic tracer).  He has completed 6 weeks of chemo and 31 proton radiation treatments.  He was hospitalized for severe burns to the esophogas, at the end of his treatment, and could barely eat or even drink water.  He has lost almost 50lbs since November.  We have experienced extreme pockets of gas that presents alot of stomach, and chest pain and often it is explosive rather than a gentle belch, etc.  Has anyone else experienced this?  Drs treating with Myralax every day, Gas X and Pantoprazole. He also had antinausea meds for chemo. It helps a little, but it's still at times unbareable.  His pain without meds stays at around a 7-8.  We are at a point of rest for 4-6 wks, then next scans.  We've called in home nursing for fluids/labs due to pain and fatigue.  Immunatherapy for next year and antitrysin infusions indefinetely have been discussed.  He's on 5L of continuous O2.  We have been told inoperable, then other drs suggest debulking might be possible to try to open up the upper lobe. Confused with that.  Mainly asking if anyone else experienced this severe gas, or have NSC Stage IV SCCL with ZZ A1 Antitrypsin Deficiency.

@claudiaferr I am sorry but I do not know the name of the immunotherapy drug that other I knew took. Sorry, it was so long ago. I am not sure but the help desk on here used to be really good at helping find info. Maybe try there? FYI, my hubby is still going strong - 9 years cancer free now.

Hello, Hoping this helps you some. My mom and I were both diagnosed with Cancer the same time in Feb 2022. Hers was a returning cancer from previous breast cancer over 20 years ago that had moved to other area in her body. Mine was new to me and labeled stage 111b - diagnosed as non-small cell carcinoma. I was given Premetrix and Cisplatin and immune therapy nivolumab. 3 monthly sessions beginning 3-15-22 and ending 5-2022. Each session lasted approx. 8 hours long. The oncologist stated the above cocktail was just FDA-approved and was more for end-of-life treatment but because they could not determine markers for my cancer it was better to be aggressive. The second Line of Treatment was: the removal of the Left upper lobe, which was completed on 6/2/22. My mom had her tumor removed in June as well. I am now having my 18 month oncology appt this month, I already snuck a peak at the recent ct scan results, and it read nothing new and nothing has grown... so happy.... Of course, I still need to meet with my thoracic surgeon and oncologist (every 6 months) but so far so good. I wished I could say the same for my mother. She passed away in Jan 2023 and was treated with Keytruda after surgery.

There are a lot of new therapies out there, I was a ginny pig for the stage I had verses what the treatment was intended for. It is worth being treated as life is precious. Meanwhile enjoy family, friends and be kind to yourself!