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

Melisande
Melisande Member Posts: 27

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).

Comments

  • Melisande
    Melisande Member Posts: 27
    Thanks jorola — that is

    Thanks jorola — that is inspiring!

  • jorola
    jorola Member Posts: 242 Member
    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.

  • Snowman20
    Snowman20 Member Posts: 1
    Treatments

    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
    starrkat Member Posts: 11
    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

    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.

  • starrkat
    starrkat Member Posts: 11
    Melisande, if it were me, I

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

  • sarabb
    sarabb Member Posts: 3
    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.

    NED/ jorola

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

     

     

  • MaryPD
    MaryPD Member Posts: 1
    edited November 2019 #8
    I am stage IV NSCLC lung

    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

     

  • jorola
    jorola Member Posts: 242 Member
    edited November 2019 #9
    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

    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
    jorola Member Posts: 242 Member
    MaryPD said:

    I am stage IV NSCLC lung

    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

     

    Sounds like you are stage 3b

    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 

  • Fadi
    Fadi Member Posts: 1
    edited January 2020 #11
    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,

    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.

  • jorola
    jorola Member Posts: 242 Member
    Fadi said:

    Jorola,

    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.

    My husband had chemo and radiation not immunotherapy

    This was 5 years ago. He had the chemos cisplatin and etoposide and radiation. See how much has changed in 5 years? Back then immunotherapy was not an option for my husband; now it would be.

  • lauder13
    lauder13 Member Posts: 4
    edited January 2020 #13
    lung cancer stage 1

    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

     

  • jorola
    jorola Member Posts: 242 Member
    i replied on your other post

    Ignore my question - I asked if they were going to do surgery. Drs will not know until they review your scans if you need chemo, radiation or immunotherapy. They need the CT scan to confirm that all active cancer cells are gone. I am sure you will know the plan soon. Hang in there!

  • Mdrnor
    Mdrnor Member Posts: 1
    edited February 2020 #15
    Stage 4 lung cancer with Mets to the liver

    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?

  • jorola
    jorola Member Posts: 242 Member
    edited March 2020 #16
    You should start your own post

    because your topic is different and many will not see it here.    :)

  • admeiring
    admeiring Member Posts: 1
    edited March 2021 #17
    Anyone with NSC Stage IV SCCL with ZZ A1 Antitrypsin Deficiency?

    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.