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

Melisande
Posts: 27
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: 242
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.

starrkat
Posts: 11
Joined: Jul 2017

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.

sarabb
Posts: 3
Joined: Oct 2019

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

 

 

jorola's picture
jorola
Posts: 242
Joined: Mar 2016

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

Melisande
Posts: 27
Joined: Aug 2019

Thanks jorola — that is inspiring!

Snowman20
Posts: 1
Joined: Oct 2019

I was diagnosed with Lung Cancer. Not sure of the exact stage but was caught early.  Had a left upper lobectomy path report said all clear.  No lymph nodes involved.  Does not recommend any adjunct treatment.  Is this okay? 

starrkat
Posts: 11
Joined: Jul 2017

Melisande, if it were me, I would do it. A lot of new research can come out of a year.

MaryPD
Posts: 1
Joined: Oct 2019

I am stage IV NSCLC lung cancer with a 7cm tumor  and received the same prognosis as you have received with Keytruda immunology for one year. Unfortunately my lymph nodes are involved and was told maybe 1-2 years of survival. I have received 4 rounds of chemo. When I asked my oncologist why only 4 cycles of chemo, her explanation was that this is based on past research.

This is confusing

 

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jorola
Posts: 242
Joined: Mar 2016

please read my husband's story above. remember many stats are based on information and treatments 10 years ago or more. Treatment has changed so much in that time these stats are no longer applicable 

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