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Thread: Navigating Day to Day Life w/stage 4

  1. #81
    Experienced User bluedawg's Avatar
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    May 2013
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    So got my scan results on Thursday. The Dr. said it was all good. My cancer is responding well to immunotherapy. When pressed about the 5 year mean survival rate and the outliers and such he said I was already one of the outliers since my cancer was responding so well.

    A separate issue has come up over the past few months where I am REALLY easily out of breath. Like I can't get enough oxygen into my lungs when I just simply go down to get the mail. So with the pet scan results showing "Since January 6, 2017 increasing bilateral patchy densities in the lung, possibly inflammatory or decreased inspiration." But since I'm having the breathing issues which we were able to reproduce at the hospital, he opted to skip treatment and have a CT scan of my chest. I waited all day for the scan results. There was some sort of a mix-up where they couldn't find them and then when it was nearing 7PM I asked if they had forgotten about me and low and behold... out came the Dr. They HAD forgotten about me. He said usually they only send the scan results back if there was a problem so there was no problem and I could go home. He set me up with an appointment in the city to see a pulmonologist on the 20th. But my main thing was I was Sooo happy about the scan results.

    Fast forward to today when the scan results were just posted to my portal where I can see them. Of course I'm no Dr. but I wish I had seen his before I saw him because I would have had a LOT of questions regarding his optimism. Here's what it says in the summary:

    "IMPRESSION:
    1. Since January 6, 2017 increasing bilateral patchy densities in the lung, possibly inflammatory or decreased inspiration.
    2. Small focal activity at the right base without CT correlate. Consider dedicated CT of the chest for better evaluation if clinically indicated
    3. Increasing activity in the left particular and left suprahilar lymph node, possibly malignant
    4. Mild increase of activity in a left para-aortic lymph node, attention on follow-up is recommended."

    So you see, it seams to me there is additional cancer present and all is not just peachy. If the cancer is growing and continuing to spread why tell me it is responding well to immunotherapy? I don't get it. I know I'm not very trusting. But I've caught a lot of mistakes in this process. This just is a total disconnect between what I am reading in the report and what he reported to me in our office visit.

    Am I wrong?
    dx - 5/10/13 - 1: Right lower lobe bronchial biopsy (fs) DIAGNOSIS: Definitive evidence of non-small cell carcinoma.
    Did Chemo no radiation followed by Lobectomy. Surgeon said he “Got it all out Clean”.
    2015 - Cancer back in some limph nodes around the same area treated with Radiation.
    2017 - Jan - Cancer spread to lymph nodes in abdomen. Treated with 15 Radiation.
    Follow up Scan in three months. Fingers & Toes Crossed.
    2017 - May 23 - Follow up scan: "Since February 16, 2017 decrease in gastrohepatic nodes. No developing suspicious findings"
    2017 - Aug 22 - Follow up scan: "Since May 23, 2017, new left para-aortic adenopathy. Other findings unchanged."
    Waiting to find out about clinical trial and immunotherapy Nivolumab
    2018 - Began Nivolumab back in Aug. Have been going every other week since. Have pet scan on Feb 6th to see if there is any detectable disease.

  2. #82
    Experienced User
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    Jun 2017
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    96
    I know that for me when I read and try to interpret (spelling?) test results it always seems worse then it really is so I wait for my doctor's appointment and then look at thé résults after. That being said, No you are not wrong to be mistrustfull because of course you want to know if your cancer has grown/spread. You need to talk to your doctor and hopefully he can set things right.

  3. #83
    Moderator Top User jorola's Avatar
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    May 2014
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    We always recommend speaking to your dr about results. It is easy to misinterpret them. Especially of you do not have prior ones to compare to.
    Wife to husband with squamous lung cancer stage 3 b
    dx - April 20/14
    tx started May 20/14 - radiation and chemo
    June 23 - chemo finished
    June 24 - tumor 1/3 the original size
    July 4 - radiation finished
    July 8 - PET scan shows tumor almost gone, lymph nodes back to normal
    Married July 19/14
    Sept 9/14 - repeat can shows tumor continues to shrink more, no new spots. New coughing and pain due to chest infection or side effect of radiation.
    Sept 19/14 - not infection but pneumonitis, place on dex for 4 weeks
    Oct 22/14 - now off of dex and facing even more symptoms of withdrawal
    Dec 16/14 - pretty much nothing left but a scar
    April 7/15 - ditto scan and screw you stats
    Oct 6/15 - more scarring but still cancer still gone
    Feb 2016 -scan the same
    Aug 2016 - more of the same
    Aug 2017 - and ditto
    Aug 2018 - 4 yrs NED

  4. #84
    Experienced User bluedawg's Avatar
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    Spoke to my Dr., He felt that the results were exaggerated. He does not feel I have anything to worry about. He is worried about my breathing issues, so I am going to see the Pulmonologist on Tuesday.
    dx - 5/10/13 - 1: Right lower lobe bronchial biopsy (fs) DIAGNOSIS: Definitive evidence of non-small cell carcinoma.
    Did Chemo no radiation followed by Lobectomy. Surgeon said he “Got it all out Clean”.
    2015 - Cancer back in some limph nodes around the same area treated with Radiation.
    2017 - Jan - Cancer spread to lymph nodes in abdomen. Treated with 15 Radiation.
    Follow up Scan in three months. Fingers & Toes Crossed.
    2017 - May 23 - Follow up scan: "Since February 16, 2017 decrease in gastrohepatic nodes. No developing suspicious findings"
    2017 - Aug 22 - Follow up scan: "Since May 23, 2017, new left para-aortic adenopathy. Other findings unchanged."
    Waiting to find out about clinical trial and immunotherapy Nivolumab
    2018 - Began Nivolumab back in Aug. Have been going every other week since. Have pet scan on Feb 6th to see if there is any detectable disease.

  5. #85
    Moderator Top User jorola's Avatar
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    May 2014
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    Good call hun
    Wife to husband with squamous lung cancer stage 3 b
    dx - April 20/14
    tx started May 20/14 - radiation and chemo
    June 23 - chemo finished
    June 24 - tumor 1/3 the original size
    July 4 - radiation finished
    July 8 - PET scan shows tumor almost gone, lymph nodes back to normal
    Married July 19/14
    Sept 9/14 - repeat can shows tumor continues to shrink more, no new spots. New coughing and pain due to chest infection or side effect of radiation.
    Sept 19/14 - not infection but pneumonitis, place on dex for 4 weeks
    Oct 22/14 - now off of dex and facing even more symptoms of withdrawal
    Dec 16/14 - pretty much nothing left but a scar
    April 7/15 - ditto scan and screw you stats
    Oct 6/15 - more scarring but still cancer still gone
    Feb 2016 -scan the same
    Aug 2016 - more of the same
    Aug 2017 - and ditto
    Aug 2018 - 4 yrs NED

  6. #86
    Experienced User bluedawg's Avatar
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    May 2013
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    66
    Saw the Pulmonologist on Tuesday. She was awesome. She sent me home with Prednisone Two 20 mg tabs once a day and Z-PAC of antibiotics to cover either Bacterial Lung infection or Hypersensitivity Pneumonitis (She was leaning more towards it being the latter). Also Cough Medicine with Codeine for the Horrible Cough. I got the scripts filled right away and started everything Tuesday night. By Wednesday morning I could breath normally again. By Thursday morning (yesterday) My cough was cleared up and I have more energy than I have had in years. I feel quite back to my old self. It's unbelievable the change overnight!

    My awesome Dr. even called to follow up with me Wednesday night even though he was on vacation. He says we should take a break from immunotherapy for a month while we get the lung thing straight, then we'll continue immunotherapy and continue a low dose of Prednisone to keep lung inflammation in check. I am happy with the plan. And extremely happy I am not suffering anymore!
    dx - 5/10/13 - 1: Right lower lobe bronchial biopsy (fs) DIAGNOSIS: Definitive evidence of non-small cell carcinoma.
    Did Chemo no radiation followed by Lobectomy. Surgeon said he “Got it all out Clean”.
    2015 - Cancer back in some limph nodes around the same area treated with Radiation.
    2017 - Jan - Cancer spread to lymph nodes in abdomen. Treated with 15 Radiation.
    Follow up Scan in three months. Fingers & Toes Crossed.
    2017 - May 23 - Follow up scan: "Since February 16, 2017 decrease in gastrohepatic nodes. No developing suspicious findings"
    2017 - Aug 22 - Follow up scan: "Since May 23, 2017, new left para-aortic adenopathy. Other findings unchanged."
    Waiting to find out about clinical trial and immunotherapy Nivolumab
    2018 - Began Nivolumab back in Aug. Have been going every other week since. Have pet scan on Feb 6th to see if there is any detectable disease.

  7. #87
    Senior User
    Join Date
    Sep 2016
    Posts
    210
    I'm happy for you hun, sounds good to me. Must be a good feeling to get back to normal breathing and no cough.
    Oct 15 diagnosed NSCLC stage IV , Mets in lymph nodes,
    Chemo 6 months, Tumour didn't grow but lymph nodes
    New Chemo 4 months, not working, new spot 4mm in Liver
    Aug 16, start Opdivo ,immune therapy
    CT Nov 16 , Tumor shrank, Lymph nodes shrank
    CT Jan 17, Tumor all the same, Lymph nodes on Neck and under arm back to normal, in Lung and Chest a bit smaller
    July 17, 2x3 cm Brain Tumor found, removed in Surgery, now radiation on spot,still on Nivu
    Fingers crossed

  8. #88
    Moderator Top User jorola's Avatar
    Join Date
    May 2014
    Posts
    1,635
    This is wonderful! I was wondering about pneumonitis. My hubby had a bout of that too after treatment.
    Wife to husband with squamous lung cancer stage 3 b
    dx - April 20/14
    tx started May 20/14 - radiation and chemo
    June 23 - chemo finished
    June 24 - tumor 1/3 the original size
    July 4 - radiation finished
    July 8 - PET scan shows tumor almost gone, lymph nodes back to normal
    Married July 19/14
    Sept 9/14 - repeat can shows tumor continues to shrink more, no new spots. New coughing and pain due to chest infection or side effect of radiation.
    Sept 19/14 - not infection but pneumonitis, place on dex for 4 weeks
    Oct 22/14 - now off of dex and facing even more symptoms of withdrawal
    Dec 16/14 - pretty much nothing left but a scar
    April 7/15 - ditto scan and screw you stats
    Oct 6/15 - more scarring but still cancer still gone
    Feb 2016 -scan the same
    Aug 2016 - more of the same
    Aug 2017 - and ditto
    Aug 2018 - 4 yrs NED

  9. #89
    Experienced User bluedawg's Avatar
    Join Date
    May 2013
    Posts
    66
    Hi everyone! All is still good. Breathing is still normal. YAY!!! Energy is starting to wain again in the afternoon, but still feeling mostly, really good. I thought I'd share a little resource gem I found. You see I had this parrot guy come over for a consult and I figured he would be a good resource to find good homes if I should need to down the road for my Moluccan Cockatoo. So I shared with him my situation and he is a staunch vegan and advocate. he recommended I read Kris Carr, "Crazy Sexy Cancer" and mentioned she had also written some great vegan recipe books and such. I was highly skeptical (who me?) LOL. But I got the book and I LOVE it. She is so funny and her writing style is so personable and she also has stage 4 cancer, albeit some rare form that she now lives with as it appears her tumors are not growing. She says a lot of the stuff I had been thinking and beating myself up for. turns out it's normal to think this way... who knew?? Anyhow just thought I'd share in case anyone else wanted a good relevant read of the topic.

    best to all,
    -Mary
    dx - 5/10/13 - 1: Right lower lobe bronchial biopsy (fs) DIAGNOSIS: Definitive evidence of non-small cell carcinoma.
    Did Chemo no radiation followed by Lobectomy. Surgeon said he “Got it all out Clean”.
    2015 - Cancer back in some limph nodes around the same area treated with Radiation.
    2017 - Jan - Cancer spread to lymph nodes in abdomen. Treated with 15 Radiation.
    Follow up Scan in three months. Fingers & Toes Crossed.
    2017 - May 23 - Follow up scan: "Since February 16, 2017 decrease in gastrohepatic nodes. No developing suspicious findings"
    2017 - Aug 22 - Follow up scan: "Since May 23, 2017, new left para-aortic adenopathy. Other findings unchanged."
    Waiting to find out about clinical trial and immunotherapy Nivolumab
    2018 - Began Nivolumab back in Aug. Have been going every other week since. Have pet scan on Feb 6th to see if there is any detectable disease.

  10. #90
    Senior User
    Join Date
    Dec 2012
    Posts
    244
    HI Mary,

    I am really glad that things are 'stable' and you can breath. I have a crazy cough that I can't shake, so I'm just living with it.

    Aren't Moluccan Cockatoos BIG? Finding a home for a big bird is often difficult because it takes an especially kind heart to care for them.
    I know.... I kept a really big Blue & Gold for my ex-wife on winter, and he put a major strain on my sanity. 2AM he would wake the neighborhood with a blood curling scream. Bungees are so much easier!!!

    It is great to hear you being upbeat! Keep it up!

    regards, zim

 

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