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Thread: Navigating Day to Day Life w/stage 4

  1. #91
    Moderator Top User jorola's Avatar
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    May 2014
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    Awesome news Mary. May things continue like this for you!
    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

  2. #92
    Hi Zim,

    Yes Moluccan's are big. And he is NOISY! He is a big love though and a happy fellow. I have three parrots and I love them more than words can say. I am especially concerned for Simba, the Moluccan, because he will be the hardest to find a good home for because of his noise level. Poor guy has had such a tough life and still chooses to trust and love humans, although you do have to earn his trust and it takes some doing.

    He has come a very long way since I have had him. Took me almost a year of unconditional love and patience and avoiding lunging swooping bite attempts but now he never ever tries such nonsense because he knows he gets nothing but love from me. Simba was torn from his home in the wild over 20 years ago when it was still legal to do so. Then they rendered him flightless by pinioning his wings. Its a particularly cruel process where they damage the follicles so the flight feathers never grow back keeping the bird forever flightless. This is only done today to zoo birds to keep them from flying away... never to parrots.

    A regular wing clipping, which I also do not do to my birds, is much less severe enabling them to glide to the ground safely without being injured by a fall but Simba's wings were really butchered. He has no flight feathers and falls like a rock if he should loose his balance which also makes him very insecure and perhaps louder than he would have otherwise been. It will take a special person to open their life up to him as he will live probably into his 80's. The rewards are great though. Like I said, If you can deal the screaming when you try to talk on the phone or watch a movie or god forbid, have people over. he is a happy fellow and loves to play all day long.



    Quote Originally Posted by icaps3 View Post
    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
    Attachments Pending Approval Attachments Pending Approval
    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.

  3. #93
    Senior User
    Join Date
    Sep 2016
    Posts
    167
    Hi Mary!
    First i'm glad all is good with you!
    And i can read all the love out of your words for the Bird!!!! Yes it was important for me also to get things sorted for my Dog Heidi , just in case.....
    Attachments Pending Approval Attachments Pending Approval
    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

  4. #94
    Senior User
    Join Date
    Sep 2016
    Posts
    167
    Hi Mary!
    How are you doing? How was the pet scan? I hope you just enjoy life?

    Hugs Petra
    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

  5. #95
    Hi Petra,

    Thanks for checking in on me! Everything is status quo. My Dr. has started me back on Nivolumab as of April 5th which I will continue every other Thursday, along with 10mg of Prednisone daily to hopefully keep the lung issue from coming back and an antibiotic every other day to keep the prednisone from causing any major infections.... apparently that's a thing.

    Aside from that, Yes indeedy, I am enjoying every day as much as possible! I have started drinking a huge glass of water every morning along with my supplements and then drinking several, usually 3 glasses of a green juice I make out of Kale, Celery, Cukes, Broccoli, Ginger root, Turmeric root, Thai Hot Pepper, Ceylon Cinnamon, Coconut water, and then, Pear and an orange or two for flavor. Sometimes I'll throw in a handful of unshelled sesame seeds (Stolen from parrot closet) as they have good protein. I use my blender to mash up the initial daily batch and keep a jar of that in the frog. Then throughout the day take a tablespoon or two of that mix, which is too thick to drink, and put it in my Magic Bullet with the coconut water and blend that into a delicious smoothy. IMHO tastes as good as any chocolate bar

    I started feeling MUCH better the day I started doing this, although it was also the day I started the Prednisone so it is hard to tell how much of each is responsible for the increase in energy and mood. I still get extremely fatigued in the afternoon, but it is definitely less so now. and if I manage to take a nap, I feel great the whole rest of the day. I make pottery in my basement which is all I really want to do anymore. I go down to the basement and get lost in pottery work. I take the birds down with me and we tell Alexa to play an audiobook or play WNYC Radio and that's real quality time for me.

    I feel VERY lucky to have found sustainable path that works for me. The local gallery carries my pottery and I have an Etsy shop (which I am trying hard to fill with good stuff but it takes time to get enough stuff made to populate the Gallery and the Etsy shop. Right now the Gallery has the awesome stuff and I am working on a special order and populating the Etsy shop since it is advertised on my tags! Then, when I really get going, I figure once a year me and some potter friends can have a pottery sale out of my garage which is a two car garage right on the street... a perfect location.

    So that's what's new with me. Still doing pretty good and not feeling like there is an expiration date on my forehead.
    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.

  6. #96
    Moderator Top User jorola's Avatar
    Join Date
    May 2014
    Posts
    1,581
    Mary you are amazing! Wow are you ever a going concern LOL. Good for you. I loved reading every part of that ....well except that drink thing.....what the heck kind of concoction is that? WHOA! K you just keep doing your thing and I'll stick with my lemon water....... or a lime and beer (see it has fruity goodness in it).
    Truly good to hear from you.
    Hugs,
    Jodie
    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

  7. #97
    Senior User
    Join Date
    Sep 2016
    Posts
    167
    wow Mary that's great to hear, you awesome girl!!!
    I stick with my Coffee and now and then a glass of vina....
    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. #98
    Quote Originally Posted by Pet1968 View Post
    wow Mary that's great to hear, you awesome girl!!!
    I stick with my Coffee and now and then a glass of vina....
    I forgot to mention 1/2 a lemon gets squeezed in the large glass of water every morning and none of this happens until I've had a couple cups of coffee. Life's just too short not to drink good coffee in the morning!
    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.

  9. #99
    Senior User
    Join Date
    Sep 2016
    Posts
    167
    Good Girl
    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

 

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