RosieSD

Hi Tom,
    Thank you so much for sharing your insight about my doctor’s comment at the hospital. I think that he really just meant to share it with the pulmonologist as a medical opinion to a colleague. He probably didn’t think the pulmonologist would tell me.
    I also agree with you about the meaning of “incurable” referring to lung cancer in its later stages. When I was at the hospital, my mind immediately translated the term to “terminal.” At the time I didn’t have anyone explain to me what it really meant in the technical sense. The high probability of recurrence really gives definition to the word. 
 
    It’s my hope to reach NED, like some of you. Right now, I’m living day by day and relishing each moment I have with my loved ones. This month I get to celebrate my birthday on Friday, December 9 and thankful I could reach the age of 48.  I don’t know if I’ll have more years, the thought of turning 50 sounds so amazing, although some people might balk at the very idea that implies aging. 
 
    Thank you for reminding me we can choose how to live by the attitude we pick to approach life and all it’s struggles. Regardless of how long I live, I will choose to see life as a gift and time as something so precious that I shouldn’t waste a minute of it by worrying about what the future holds.
 
     Again, I appreciate your encouragement and support. I hope you enjoy this season and have a blessed Christmas and New Year with  your family and friends. 
 
Rosie

Hi Tom,
    Thank you so much for sharing your insight about my doctor’s comment at the hospital. I think that he really just meant to share it with the pulmonologist as a medical opinion to a colleague. He probably didn’t think the pulmonologist would tell me.
    I also agree with you about the meaning of “incurable” referring to lung cancer in its later stages. When I was at the hospital, my mind immediately translated the term to “terminal.” At the time I didn’t have anyone explain to me what it really meant in the technical sense. The high probability of recurrence really gives definition to the word. 
 
    It’s my hope to reach NED, like some of you. Right now, I’m living day by day and relishing each moment I have with my loved ones. This month I get to celebrate my birthday on Friday, December 9 and thankful I could reach the age of 48.  I don’t know if I’ll have more years, the thought of turning 50 sounds so amazing, although some people might balk at the very idea that implies aging. 
 
    Thank you for reminding me we can choose how to live by the attitude we pick to approach life and all it’s struggles. Regardless of how long I live, I will choose to see life as a gift and time as something so precious that I shouldn’t waste a minute of it by worrying about what the future holds.
 
     Again, I appreciate your encouragement and support. I hope you enjoy this season and have a blessed Christmas and New Year with  your family and friends. 
 
Rosie

Hi Karen, 
   Your comment was so funny, it made my day. Over thanksgiving week I started looking into prospects and requested my primary care physician for referrals. Thank you for reminding me about keeping a positive outlook and sense of humor through all this. This cancer journey can seem like a horror and drama movie in one, that we forget we can add comedy into the mix. And though we can’t control what happens to us, or what other people say, we have total control of how we respond, even if sometimes it means saying “bye Felicia!” to your oncologist😆
Rosie

Hi Lily, 
   Yes, I agree with you 100% about finding another doctor. I already requested my primary care physician for a referral to another oncologist. It would be amazing if I could find a lung cancer specialist. Regarding biomarker testing, I’m not sure if my doctor ordered a full panel. He again, was a bit dismissive, saying I have squamous cell lung cancer which doesn’t have mutations. When I did some research, I found out that although it’s rare, squamous cell lung cancer can mutate. So this is something I will bring up when I meet up with another oncologist. 
 
   We’re on the same boat as well, having a little one. My daughter is only four, and she’s a mama’s girl. She was crying when she saw I was losing my hair. I said to her that mommy will get some new hair. I got a few wigs and we had fun trying them out, even got a purple one just for fun. I’m so there with you about making good memories. Life is like a collection of memories, some of them on the sad side. We both have tears that we shed in secret. Our kids are so young, and cancer is something beyond their ability to comprehend. I’m looking into getting my will prepared soon. I think it’s a good idea to have it as an added security and peace of mind, as well as an advanced directive. I’m also encouraged by what you said, how you “push yourself out of the ditch and revert back to hope,” that’s pretty much what I’ve been doing as well… this disease isn’t just a physical, it’s a mental battle as well.
 
   As far as the pain, my sister gave me these thc gummies. One 10 mg gummy bear helps with the pain. I’m not sure how they would be long term, it just works for now. I’ll also explore other options such as palliative care and JudyM’s referrals too. 
 
   Hope your Christmas will be filled with more happy memories with your son.  It’s a season that brings hope, let’s enjoy it with our loved ones.
Rosie

That’s amazing, Judy. It’s good to hear there are medical specialists who are on your side and don’t dismiss you or treat you like just another body. When I heard my doctor's comment, I had to ask him what he meant. I even had to beg him not to give up on me, that I feel like a boxer fighting this disease… if he could be that coach that helps me through it. This last appointment with him I had on Tuesday before my chemo, he was so abrupt, didn’t give me a chance to talk or ask questions. The appointment must’ve lasted 5 minutes, he just wanted me to go to chemo right away. Anyway, I still find it difficult to talk about. I still can’t get over what he said at the hospital. 
 
Thank you so much as well for your referrals. I haven’t checked them out yet, I’m not sure how to access my pm’s. I’ve been taking thc gummies for pain. Just one 10 mg helps. I stopped taking oxy and morphine, since I need to be driving and take/pick up my daughter from school. 
 
Thank you for the encouraging words, that I don’t have to listen to my doctor’s negativity. I’m just glad it’s Christmas I could drown it out with happy Christmas music. I hope you enjoy this season as well.
Rosie

Hi June, 
    Yeah, you’re right about this disease about how unpredictable it is. At least I don’t have to do infusions of Opdivo which was so painful for my muscles. I’m on chemotherapy with Carboplatin and Abraxane. 
 
   I do hope this is my saving grace. My oncologist said radiation is not an option since there’s a large area that need to be covered. My chemo treatments will go through January. I’m on my second cycle, with two more to go. Thank you so much for your prayers, I’m hoping we both can get to NED and remission too. Have a blessed Christmas season with your family!🎄
Rosie

Hi Judy, 
Thank you so much, I’d really appreciate it if you have referrals to new doctors and palliative care.  I apologize for the late reply, cause of thanksgiving and doing chemo this week. The palliative care physician in might be a bit far for me since I live in Lakeside. My oncologist here in La Mesa, Dr. Kai Zu, although he might be a good doctor, but his bedside manner I find is a bit dismissive. He mentioned to a pulmonologist that I was “incurable”, who later relayed the message to me, this was when I was hospitalized in the beginning of November when I found out the cancer spread to my other lung. It’s concerning, given he made this comment before I even started chemotherapy. 
 
Anyway, I just hope to get a second or third opinion from a medical professional who also cares. I’d appreciate your referrals for oncologists, if you have any that are not to far from central San Diego. I hope you had a good Thanksgiving and a joyful Christmas with your family.
Sincerely,
Rosie

That’s amazing, Judy. It’s good to hear there are medical specialists who are on your side and don’t dismiss you or treat you like just another body. When I heard my doctor's comment, I had to ask him what he meant. I even had to beg him not to give up on me, that I feel like a boxer fighting this disease… if he could be that coach that helps me through it. This last appointment with him I had on Tuesday before my chemo, he was so abrupt, didn’t give me a chance to talk or ask questions. The appointment must’ve lasted 5 minutes, he just wanted me to go to chemo right away. Anyway, I still find it difficult to talk about. I still can’t get over what he said at the hospital. 
 
Thank you so much as well for your referrals. I haven’t checked them out yet, I’m not sure how to access my pm’s. I’ve been taking thc gummies for pain. Just one 10 mg helps. I stopped taking oxy and morphine, since I need to be driving and take/pick up my daughter from school. 
 
Thank you for the encouraging words, that I don’t have to listen to my doctor’s negativity. I’m just glad it’s Christmas I could drown it out with happy Christmas music. I hope you enjoy this season as well.
Rosie

Hi Judy, 
Thank you so much, I’d really appreciate it if you have referrals to new doctors and palliative care.  I apologize for the late reply, cause of thanksgiving and doing chemo this week. The palliative care physician in might be a bit far for me since I live in Lakeside. My oncologist here in La Mesa, Dr. Kai Zu, although he might be a good doctor, but his bedside manner I find is a bit dismissive. He mentioned to a pulmonologist that I was “incurable”, who later relayed the message to me, this was when I was hospitalized in the beginning of November when I found out the cancer spread to my other lung. It’s concerning, given he made this comment before I even started chemotherapy. 
 
Anyway, I just hope to get a second or third opinion from a medical professional who also cares. I’d appreciate your referrals for oncologists, if you have any that are not to far from central San Diego. I hope you had a good Thanksgiving and a joyful Christmas with your family.
Sincerely,
Rosie

Hi Lily, 
   Yes, I agree with you 100% about finding another doctor. I already requested my primary care physician for a referral to another oncologist. It would be amazing if I could find a lung cancer specialist. Regarding biomarker testing, I’m not sure if my doctor ordered a full panel. He again, was a bit dismissive, saying I have squamous cell lung cancer which doesn’t have mutations. When I did some research, I found out that although it’s rare, squamous cell lung cancer can mutate. So this is something I will bring up when I meet up with another oncologist. 
 
   We’re on the same boat as well, having a little one. My daughter is only four, and she’s a mama’s girl. She was crying when she saw I was losing my hair. I said to her that mommy will get some new hair. I got a few wigs and we had fun trying them out, even got a purple one just for fun. I’m so there with you about making good memories. Life is like a collection of memories, some of them on the sad side. We both have tears that we shed in secret. Our kids are so young, and cancer is something beyond their ability to comprehend. I’m looking into getting my will prepared soon. I think it’s a good idea to have it as an added security and peace of mind, as well as an advanced directive. I’m also encouraged by what you said, how you “push yourself out of the ditch and revert back to hope,” that’s pretty much what I’ve been doing as well… this disease isn’t just a physical, it’s a mental battle as well.
 
   As far as the pain, my sister gave me these thc gummies. One 10 mg gummy bear helps with the pain. I’m not sure how they would be long term, it just works for now. I’ll also explore other options such as palliative care and JudyM’s referrals too. 
 
   Hope your Christmas will be filled with more happy memories with your son.  It’s a season that brings hope, let’s enjoy it with our loved ones.
Rosie

Hi Tom,
    Thank you so much for sharing your insight about my doctor’s comment at the hospital. I think that he really just meant to share it with the pulmonologist as a medical opinion to a colleague. He probably didn’t think the pulmonologist would tell me.
    I also agree with you about the meaning of “incurable” referring to lung cancer in its later stages. When I was at the hospital, my mind immediately translated the term to “terminal.” At the time I didn’t have anyone explain to me what it really meant in the technical sense. The high probability of recurrence really gives definition to the word. 
 
    It’s my hope to reach NED, like some of you. Right now, I’m living day by day and relishing each moment I have with my loved ones. This month I get to celebrate my birthday on Friday, December 9 and thankful I could reach the age of 48.  I don’t know if I’ll have more years, the thought of turning 50 sounds so amazing, although some people might balk at the very idea that implies aging. 
 
    Thank you for reminding me we can choose how to live by the attitude we pick to approach life and all it’s struggles. Regardless of how long I live, I will choose to see life as a gift and time as something so precious that I shouldn’t waste a minute of it by worrying about what the future holds.
 
     Again, I appreciate your encouragement and support. I hope you enjoy this season and have a blessed Christmas and New Year with  your family and friends. 
 
Rosie

Hi Karen, 
   Your comment was so funny, it made my day. Over thanksgiving week I started looking into prospects and requested my primary care physician for referrals. Thank you for reminding me about keeping a positive outlook and sense of humor through all this. This cancer journey can seem like a horror and drama movie in one, that we forget we can add comedy into the mix. And though we can’t control what happens to us, or what other people say, we have total control of how we respond, even if sometimes it means saying “bye Felicia!” to your oncologist😆
Rosie

Hi Lily, 
   Yes, I agree with you 100% about finding another doctor. I already requested my primary care physician for a referral to another oncologist. It would be amazing if I could find a lung cancer specialist. Regarding biomarker testing, I’m not sure if my doctor ordered a full panel. He again, was a bit dismissive, saying I have squamous cell lung cancer which doesn’t have mutations. When I did some research, I found out that although it’s rare, squamous cell lung cancer can mutate. So this is something I will bring up when I meet up with another oncologist. 
 
   We’re on the same boat as well, having a little one. My daughter is only four, and she’s a mama’s girl. She was crying when she saw I was losing my hair. I said to her that mommy will get some new hair. I got a few wigs and we had fun trying them out, even got a purple one just for fun. I’m so there with you about making good memories. Life is like a collection of memories, some of them on the sad side. We both have tears that we shed in secret. Our kids are so young, and cancer is something beyond their ability to comprehend. I’m looking into getting my will prepared soon. I think it’s a good idea to have it as an added security and peace of mind, as well as an advanced directive. I’m also encouraged by what you said, how you “push yourself out of the ditch and revert back to hope,” that’s pretty much what I’ve been doing as well… this disease isn’t just a physical, it’s a mental battle as well.
 
   As far as the pain, my sister gave me these thc gummies. One 10 mg gummy bear helps with the pain. I’m not sure how they would be long term, it just works for now. I’ll also explore other options such as palliative care and JudyM’s referrals too. 
 
   Hope your Christmas will be filled with more happy memories with your son.  It’s a season that brings hope, let’s enjoy it with our loved ones.
Rosie

Hi Karen, 
   Your comment was so funny, it made my day. Over thanksgiving week I started looking into prospects and requested my primary care physician for referrals. Thank you for reminding me about keeping a positive outlook and sense of humor through all this. This cancer journey can seem like a horror and drama movie in one, that we forget we can add comedy into the mix. And though we can’t control what happens to us, or what other people say, we have total control of how we respond, even if sometimes it means saying “bye Felicia!” to your oncologist😆
Rosie

Hi Lily, 
   Yes, I agree with you 100% about finding another doctor. I already requested my primary care physician for a referral to another oncologist. It would be amazing if I could find a lung cancer specialist. Regarding biomarker testing, I’m not sure if my doctor ordered a full panel. He again, was a bit dismissive, saying I have squamous cell lung cancer which doesn’t have mutations. When I did some research, I found out that although it’s rare, squamous cell lung cancer can mutate. So this is something I will bring up when I meet up with another oncologist. 
 
   We’re on the same boat as well, having a little one. My daughter is only four, and she’s a mama’s girl. She was crying when she saw I was losing my hair. I said to her that mommy will get some new hair. I got a few wigs and we had fun trying them out, even got a purple one just for fun. I’m so there with you about making good memories. Life is like a collection of memories, some of them on the sad side. We both have tears that we shed in secret. Our kids are so young, and cancer is something beyond their ability to comprehend. I’m looking into getting my will prepared soon. I think it’s a good idea to have it as an added security and peace of mind, as well as an advanced directive. I’m also encouraged by what you said, how you “push yourself out of the ditch and revert back to hope,” that’s pretty much what I’ve been doing as well… this disease isn’t just a physical, it’s a mental battle as well.
 
   As far as the pain, my sister gave me these thc gummies. One 10 mg gummy bear helps with the pain. I’m not sure how they would be long term, it just works for now. I’ll also explore other options such as palliative care and JudyM’s referrals too. 
 
   Hope your Christmas will be filled with more happy memories with your son.  It’s a season that brings hope, let’s enjoy it with our loved ones.
Rosie

That’s amazing, Judy. It’s good to hear there are medical specialists who are on your side and don’t dismiss you or treat you like just another body. When I heard my doctor's comment, I had to ask him what he meant. I even had to beg him not to give up on me, that I feel like a boxer fighting this disease… if he could be that coach that helps me through it. This last appointment with him I had on Tuesday before my chemo, he was so abrupt, didn’t give me a chance to talk or ask questions. The appointment must’ve lasted 5 minutes, he just wanted me to go to chemo right away. Anyway, I still find it difficult to talk about. I still can’t get over what he said at the hospital. 
 
Thank you so much as well for your referrals. I haven’t checked them out yet, I’m not sure how to access my pm’s. I’ve been taking thc gummies for pain. Just one 10 mg helps. I stopped taking oxy and morphine, since I need to be driving and take/pick up my daughter from school. 
 
Thank you for the encouraging words, that I don’t have to listen to my doctor’s negativity. I’m just glad it’s Christmas I could drown it out with happy Christmas music. I hope you enjoy this season as well.
Rosie

Hi June, 
    Yeah, you’re right about this disease about how unpredictable it is. At least I don’t have to do infusions of Opdivo which was so painful for my muscles. I’m on chemotherapy with Carboplatin and Abraxane. 
 
   I do hope this is my saving grace. My oncologist said radiation is not an option since there’s a large area that need to be covered. My chemo treatments will go through January. I’m on my second cycle, with two more to go. Thank you so much for your prayers, I’m hoping we both can get to NED and remission too. Have a blessed Christmas season with your family!🎄
Rosie

Hi Judy, 
Thank you so much, I’d really appreciate it if you have referrals to new doctors and palliative care.  I apologize for the late reply, cause of thanksgiving and doing chemo this week. The palliative care physician in might be a bit far for me since I live in Lakeside. My oncologist here in La Mesa, Dr. Kai Zu, although he might be a good doctor, but his bedside manner I find is a bit dismissive. He mentioned to a pulmonologist that I was “incurable”, who later relayed the message to me, this was when I was hospitalized in the beginning of November when I found out the cancer spread to my other lung. It’s concerning, given he made this comment before I even started chemotherapy. 
 
Anyway, I just hope to get a second or third opinion from a medical professional who also cares. I’d appreciate your referrals for oncologists, if you have any that are not to far from central San Diego. I hope you had a good Thanksgiving and a joyful Christmas with your family.
Sincerely,
Rosie

Rosie,
I've been following your dialogue with other members. All have given superb suggestions about treatment and side effects. Like Lily, I also used Tramadol when I had adverse reactions with other narcotic pain meds with good results.
You mentioned your doctors pronounced your cancer incurable. And in a technical sense, they are right. Lung cancer is rarely cured; it is controlled. Mine has been "controlled" for so long now I have enjoyed more than 18 years of no evidence of disease. My medical oncologist pronounced me "cured" about 2 years ago, but I think he did so because he was retiring from practice and wanted to go our with a win. Here is some insight into what treatment outcomes mean in our disease. This information was provided by my medical oncologist, and I've found it helpful to explain what all these outcome characterizing words mean.
Advanced stage lung cancer is indeed difficult to eradicate because it has a nasty tendency to recur after successful treatment. That was my problem suffering 5 recurrences after treatment. The outcome term most of us pray for is no evidence of disease or NED. It means a radiologist can see nothing of interest on a scan, no tumors or nodules. It also indicates the course of treatment that produced NED was (is) successful. It does not, unfortunately, mean the disease won't return.
There are two ways to consider NED: a repeating hell or an opportunity to enjoy life. I spent my early NED years in contemplative misery worrying about recurrence and death and wasted a lot of time fretting about something I had no control over. I'd forgotten that none of us know when life will end and worrying about it is a grand waste of time.
You have the world to live for and living in a NED world can be grand indeed. Your attitude is something you can control, and you can choose to enjoy the life you have and live it in high style with your family soaking up love and joy. I wish you peace and joy and the happiest of Thanksgiving and Christmas surrounded by the love of your family.
Stay the course.
Tom

Here in San Diego we have world-class lung cancer care. I've sent Rosie some contacts by private message.
I agree with Karen about use of the word "terminal". I'm fact, when I was diagnosed, my primary doctor said that lung cancer isn't a death sentence anymore. And my oncologist is such a great cheerleader that I've never felt like he'd just give up on me. 

If someone were to say I was terminal, I would feel like I’d been written off. I would also secretly toy with the idea of finding a hitman, but would settle for being angry. How dare that doctor sound so dismissive! Perhaps you’d consider finding an oncologist who would take a slightly different tack? The pulmonologist might be able to recommend someone, or perhaps you’re near a larger cancer center? You deserve better than to beg your own doctor to believe in your prospects. Please keep us posted. 

I am really sorry immuno made things worse for you Rosie. Did they do biomarker testing to check for actionable mutations? Are you being seen by a lung cancer specialist or a general oncologist? It makes my blood boil when heartless doctors tell their patients they are incurable or terminal from the get go. Can you get a second opinion? You should not be begging your doctors to care about you, they sound terrible at being human beings...
I am still so raw when it comes to my diagnosis and the fact that my boy is decades away from being a grown up man. One of the things I did that was helpful to me may surprise you: My husband and I made our wills, including guardians etc. Though many find this morbid, it gave me some control since most other things I had not much control over. After that was done, I started training myself to think of the now and here. I often fail, and occasionally break down sobbing, but I somehow always rebound. Every night when I tuck my kid in bed, I feel such sadness and worry for the future but push myself immediately to make loving memories. We tickle, hug, sing, tell stories and talk about our day. I often cry after he sleeps but then push myself out of the ditch and revert to hope. It is so tough, I know, but despair is not a good state to be in alone, let alone with a kid at home.
My doctors prescribed me Tramadol for pain. It was quite helpful. I did not drive during that period though so that may be an issue if you have to drive. Are you able to organize help your can receive from others to reduce your need to drive if that is at all possible so you can have pain meds that help you live more enjoyable life?
Please stay strong and positive but seek better care if you do not like your doctors or you feel they are shortchanging you! Life is precious especially with a child still needing their mommy so keep up the fight. Keep us posted, I hope things stabilize soon.

Rosie, there are other pain meds besides oxy and morphine. I can't tolerate either of them, so my palliative care doctor prescribed methadone first, and she switched me to a Fentanyl patch when I went on Tagrisso. I'm happy to give you my palliative care doctor's contact info, I will send it in a private message. She has privileges at the big Palomar Hospital in Escondido. 
My husband is finding that CBD oil helps with his painful hip that needs replacement. I'll get the specifics to you also. 
I'm not sure what oncologist you go to, but if you ever want to make a switch or need a second opinion, there are a couple of names I could give you. 

Happy thanksgiving week, hope you all get to enjoy precious time with your families. I’d like to share about changes in my treatment. I went through immunotherapy ( Opdivo and yervoy) from July until October this year and I was hospitalized the first week of this month. The immunotherapy caused my cancer to progress and spread to my left lung. It also affected my blood levels and left me severely anemic and dehydrated. 
 
My oncologist decided I needed to switch to chemotherapy ( Carboplatin and paclitaxel). I’ve received my second infusion this week and it’s been rough with the side effects. Most days I’m dealing with fatigue, headache, abdominal, chest and lower back pain. I’m prescribed heavy duty pain meds which I only use sparingly.
 
Through all of this, I’ also have a 4 year old girl I’m doing my best to take care of. I’m hopeful this new treatment works in spite of all the side effects. It’s easy to slip into depression when things get rough. I’m just thankful for this support community, it really helps to meet current patients and survivors who understand what you’re going through and encourage you on your journey. 
 
all the best, 
Rosie