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Thread: Navigating Day to Day Life w/stage 4

  1. #131
    Experienced User bluedawg's Avatar
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    May 2013
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    Lisa, I did tell him and he made no such indication, but I will double check next time I see him.
    Thanks!
    -M
    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. #132
    Experienced User bluedawg's Avatar
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    Has anyone else had a difficult time speaking with friends about this? Some people "get it" and some people, well I just want to slap them. But of course that would be way out of line since they are speaking from a place of love and caring. I have to keep reminding myself of that.

    People say things to me like "you have such a positive attittude and since it's all in the attitude, you're going to live forever". One friend literally just now texted me "Think of it as a recipe, Two parts Diet, One part Holistic or alternative treatments and One part Trust/Attitude/Courage". I believe the "It" they are speaking of is the cure for Cancer. WTF, Really people?

    I'm trying to stay grounded. I made a commitment to the truth a long time ago and all of this well meaning "advice" is really testing my patience. I just don't know what to say to them. Not long ago, my friend, the same one with the recipe advice, sent me a long 5 page article on 5 ways to beat cancer, that she had copied off god knows where and she got angry with me when I said, "Thanks for sending but I prefer to focus on things I can do something about" I was trying to be honest. She said she felt that I do not respect her and that she always has to walk on eggshells around me. I thought that was kind of a crazy response to my simple honest answer. Maybe I should have just said "No thank you"? I don't know.

    One thing that I do know is that I do not want to spend my time chasing after every cure that people send my way. I choose what rings true for me. I have made the changes that matter in my life as per lifestyle and nutrition. Just because my cancer is progressing I get bombarded with a barrage of advice as though there is something that I can do about it that I am not already doing.

    I wish I had a good answer that would help them to understand how their advice makes me feel.
    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. #133
    Hi Mary!
    I made the same experience in my time with cancer. And lost some "friends". Some just can't stand it, some don't know how to approach, but i think that's life. I don't have time for this and so you will soon know which are really friends...
    You will need your strength for yourself. It is hard sometimes, as i lost a friend who was with me for many years, but now i know who i can count on.
    See in my workplace, they did know my diagnosis and that the doc said may a year or so left. They did alot for me, but after nearly two years, i think they did not believe me anymore, because i still wasn't dead! That's true! And while waiting for my brain surgery they did throw me out!!! Very nice, right???
    But for me it was a new start, we moved, bought a house and i am happy!!!
    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
    August 18, all still same, living life every day
    January 2019 < CT said NED!!!!
    Fingers crossed

  4. #134
    Hi Mary!
    I made the same experience in my time with cancer. And lost some "friends". Some just can't stand it, some don't know how to approach, but i think that's life. I don't have time for this and so you will soon know which are really friends...
    You will need your strength for yourself. It is hard sometimes, as i lost a friend who was with me for many years, but now i know who i can count on.
    See in my workplace, they did know my diagnosis and that the doc said may a year or so left. They did alot for me, but after nearly two years, i think they did not believe me anymore, because i still wasn't dead! That's true! And while waiting for my brain surgery they did throw me out!!! Very nice, right???
    But for me it was a new start, we moved, bought a house and i am happy!!!
    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
    August 18, all still same, living life every day
    January 2019 < CT said NED!!!!
    Fingers crossed

  5. #135
    Experienced User bluedawg's Avatar
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    That is awesome Petra, I'm glad you were able to find the good in all of that. It certainly is a crash course in human behavior. Keep on Keepin' on
    -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.

  6. #136
    Senior User
    Join Date
    Dec 2012
    Posts
    313
    Ah Mary,
    You have forgotten the RULES!
    As a charter member here established:
    Rule 1. Don't Panic
    Rule 2. Don't forget Rule

    I detect your nerve ends hanging out, and that isn't good. Doctor shopping usually only finds the guy that hasn't read your file, or is only interested in what YOU can contribute to HIS research, reputation or checking account. I'm all for a second opinion, or even a third, when it is to verify or clarify diagnosis. (We have several members here that were MISS diagnosed to start with, and thankfully they saw another Dr. to set things straight.)

    You know that I'm looking down that narrowing tube without any prospective treatment, so I am a prime candidate for the Magic cure, but I'll die happy, before I let some so-called Dr pump me full of ground up apricot seed or some such. AND I'll save the airfare for my grand daughter's college fund!!

    Please, Dear Mary, CHIN UP, Live today and take good care of those BIRDS!
    You know that we all love you here!
    Warmest Regards... zim

  7. #137
    Experienced User bluedawg's Avatar
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    I am so thankful today that I feel good. That even though it is cold and rainy out I can stand in contentment with Dayo on my hand giving her a better view of the rain out the back door. She loves to look out the back door. She waits up at night for the raccoons to arrive and won’t come to bed until they have all finished eating and playing. There are four young ones who showed up without a mom and I started feeding them. They’ve come every night and when they are done eating they roll about and play like puppies. I slept very late today, perhaps why I feel so good today. During the day She perches on top of the back door and leans down so she can see all the birds at the bird feeders. She has a large aviary that runs the length of the house and always has access to that but she prefers the back door. She only likes the aviary if the squirrels are having breakfast, then she likes to try and grab their feet through the 1/2” wire mesh, which of course she can not do… it’s just a game.

    I have gotten Simba settled in his new Sanctuary home and he has already made a love connection. He and Lucy are inseparable. The sanctuary sent me this picture yesterday. I got him into heir “Lifetime Care” program so he never has to be re-homed and he can spend the rest of his days with Lucy. I prefer “New beginning” rather than “Happy Ending” ❤️

    Attachment 931(Images allowed only in memorial wall and lounge)
    Last edited by po18guy; 10-23-2018 at 07:48 AM. Reason: Add space between txt and photo
    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.

  8. #138
    Experienced User bluedawg's Avatar
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    May 2013
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    Zim,
    I know you mean well, but you should know that I am not panicked. I am one who researches thoroughly all of my options. I do not believe we should just go with the flow and trust all that we hear. We each have a brain and must use it to be our own advocates. I am not about to let, as you so eloquently put it, "some so-called Dr pump me full of ground up apricot seed or some such." nor am I going to give up when there are still possible scientifically proven cures out there. Do your own research and by research, I don't mean ask your Dr. But rather go to https://www.ncbi.nlm.nih.gov/pubmed/ and see what methods have been scientifically tested and what their results are. That's all I have to say about that
    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. #139
    Newbie New User
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    Hi Mary. Just chiming in to say that it seems you're from/in NJ and if you're looking for a doctor with a great bedside manner, try Dr. Sophie Morse. My father had to choose between her and a doctor at Sloan (who was wonderful but missed his elevated PLD1 expression and thus candidacy for immunotherapy). He chose Dr. Morse despite how well-regarded Sloan is in this field and she's been just as, if not more, impressive than the doctors at Sloan. Her kindness (and expertise) may be just what you need at this point.

 

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