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

Melisande
Posts: 17
Joined: Aug 2019

I would be interested in hearing from long-term survivors of stage IIIb and stage IV NSCLC.

i have been diagnosed with stage IIIb squamous cell lung cancer with occult primary (the cancer in only in my thoracic lymph nodes; the primary tumor is either too small to be detected or regressed or nonexistent.) I have just been pitched a treatment plan that consists of 6 weeks of chemoradiation followed by 1 year of immunotherapy (my tumors are highly expressive of PD-L1). This treatment plan was presented with the enthusiasm usually reserved for luxury cruises and spa vacations (you will be a great candidat! 90% of patients taking immunotherapy have no side effects at all! You will be able to go about your daily life! If your autoimmune disease comes out of remmission, we can give you steroids! No problem!Only 10% of patients on Taxol suffer from peripheral neuropathy! (Rah!) Your hair WILL grow back after Carboplatin! (Rah!), etc.

i was all jazzed up after hearing the great news. But then, I did a little digging — some good ol’ research speciifically about the amazing clinical trial my oncologist was telling me about (Pacific Trial w/Imfinzi). Well, imagine my disappointment when I read that this immunotherapy was not a life saver after all. It merely helped patients live an extra year (and of course the treatment itself lasts a year).

I don’t know. One of the endpoints of this study was progression-free disease. But I personally already have that. I have no symptoms and have had no progression for at least two months (when we started paying attention). 

I would go through with the plan — the chemoradiation and the immunotherapy I’d i knew that was a fairly good chance of living 5 to 10 years at least. I am just not sure I care about 1 year. 

So, if you are a long term survivor of stage Iiib or stage IV lung cancer, I’d like to hear your experienc. (Meanwhile I will also be searching through this forum).

jorola's picture
jorola
Posts: 237
Joined: Mar 2016

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.

Melisande
Posts: 17
Joined: Aug 2019

Thanks jorola — that is inspiring!

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