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Steff

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  1. Like
    Steff got a reaction from Samanthagg in Mom newly diagnosed with Stage IV NSCLC   
    Katum31,
    Hi and welcome.  So many of us know all too well the fear, anxiety, anger, and sadness you are feeling about your mom's diagnosis.  I was buried in these emotions when my mom was originally diagnosed and then even more so when she was diagnosed with her recurrence.  Like your mom, my mom is young too (61 years old at diagnosis, almost 65 now).  My mom was also a late-stage diagnosis.  Your question about what to expect is a good one...I wish I could help more, but everyone is so different when it comes to treatment side effects.  Here is what I can tell you about my experiences, maybe it will help a bit.
    Brain radiation - my mom's best friend and my uncle had cyber knife for brain mets from lung cancer - both did well with it.  The major side effect was tiredness.  My cousin's wife just had whole brain radiation and spot radiation for mets from breast cancer.  She's only in her 30's, but all she experienced was some tiredness.
    Radiation on the hip - my cousin's wife is also going through radiation for mets to her hip (breast cancer).  She was in intolerable pain from the bone mets.  After 2 sessions of radiation, her pain began to get much more tolerable. She had no real side effects.  She will have periodic radiation to that met for a long time as she has the most aggressive type of breast cancer - they are just trying to help with quality of life at this point.  Luckily, non small cell lung cancer is not as aggressive.  
    Chemo - my mom has gone through 2 different bouts of chemo.  The first time she did great, the second time, not so great.  One major determinant of chemo effects is the type(s) that your mom will be getting.  Do you know what chemo(s) she will be getting yet?  I also personally feel that the patient's overall health and state of mind can play a crucial part in how bad side effects can be.  With the 2nd bout of chemo, my mom was already having other health issues that got worse once chemo started.  But my mom is a VERY strong person.  She pulls through all of these health issues like a warrior.  I am happy to hear that your mom is a warrior too.  
    The best piece of advice I can give you as a caregiver/care advocate is to arm yourself with knowledge.  It was my mom's job to be the patient and my job to be the knowledgeable one and advocate for the best care she can get.  There's a lot of "crap" out there posing as lung cancer "facts" and it's hard to sift through what is good info and what is crap.  My suggestion is to start with LUNGevity's website..."Lung Cancer 101" is a great first page to check out and go from there.  Also, reach out to us.  There are so many survivors here that can likely answer just about any question you have.  We are here for you. You are not alone.
    And finally, I want to reassure you that there is hope. 5 years ago, a late stage lung cancer diagnosis was a likely death sentence, but NOT TODAY.  Get your mom going through treatment and ride the crazy roller coaster of life with lung cancer, that's all we can do.  Advocate, take good notes, and appreciate all of the time that you have left with your loved ones - something we should be doing no matter what.
    Take care,
    Steff
  2. Like
    Steff got a reaction from Charles in Durvalumab   
    Great news Charles!
  3. Haha
    Steff reacted to Charles in Durvalumab   
    As I sit here in front of my inside portal to the outside world with eyelids swollen, looking like I just went at least three rounds with Apollo Creed two words come to mind: "Adrian!  Adrian!" A little attempted humor there.
  4. Like
    Steff got a reaction from Claudia in Mom newly diagnosed with Stage IV NSCLC   
    Well then, knowing your mom's specific treatment plan helps me to share more of my mom's story with you as it will be relevant...
    Pembrolizumab is another name for Keytruda - an immunotherapy.  Standard care for folks without mutations with NSCLC adenocarcinoma often includes chemo + Keytruda.  My mom did not have any mutations, but her PD-L1 expression is in the high 90%'s, so it made her a good fit for Keytruda.  So her treatment plan included 2 kinds of chemo (Carboplatin + Alimta) and Keytruda.  She did 6 sessions of chemo + Keytruda and then went on to Keytruda alone for about 6 months.  I imagine your mom's different chemo cocktail is due to her EGFR gene mutation and an Exon 20 insertion.  
    My mom's lung cancer responded to the treatment with total obliteration.  She has had no evidence of active disease for quite some time and felt immediate relief from the treatment (her cancer was on the back of her trachea and she had to have a stent to keep her trachea open, the stent was removed within a few months of beginning treatment because the tumor had shrunken so much).  Chemo has it's side effects. As I said before, my mom didn't do that great with her 2nd round of chemo.  It was a tough 6 months, but she made it through.  Keytruda has much less severe side effects for most people.  If you want, you can check out my mom's journey through her 1st year of Keytruda.  I talk about the side effects and troubles she had throughout the treatment.  You can find it    here.   I hope it provides you hope, that's my intention.
    I know that you are probably in a dark place right now, I get it.  When I reached out to these forums, I had never been so lost in my life.  These forums and the information from LUNGevity helped me find my way and helped me to advocate for my mom.  If you were to ask my mom what kind of cancer she has, she would tell you lung cancer.  She doesn't know non-small cell or adenocarcinoma.  When you ask what kind of treatment she has had, she will say a lobectomy, chemo, radiation, and Keytruda.  And that's enough information for her.  I love that your mom's only job is to get better. I have the same philosophy.  I'm an only child and my dad has dementia, so I am it when it comes to the "team" of advocates for my mom.  I hope you have more support as it's an exhausting journey.  Arm yourself with knowledge and know that you are going to second guess yourself a lot.  But that's okay.  There's no clear cut path, your mom is forging her own path as a warrior.  
  5. Like
    Steff got a reaction from Claudia in Mom newly diagnosed with Stage IV NSCLC   
    Katum31,
    Hi and welcome.  So many of us know all too well the fear, anxiety, anger, and sadness you are feeling about your mom's diagnosis.  I was buried in these emotions when my mom was originally diagnosed and then even more so when she was diagnosed with her recurrence.  Like your mom, my mom is young too (61 years old at diagnosis, almost 65 now).  My mom was also a late-stage diagnosis.  Your question about what to expect is a good one...I wish I could help more, but everyone is so different when it comes to treatment side effects.  Here is what I can tell you about my experiences, maybe it will help a bit.
    Brain radiation - my mom's best friend and my uncle had cyber knife for brain mets from lung cancer - both did well with it.  The major side effect was tiredness.  My cousin's wife just had whole brain radiation and spot radiation for mets from breast cancer.  She's only in her 30's, but all she experienced was some tiredness.
    Radiation on the hip - my cousin's wife is also going through radiation for mets to her hip (breast cancer).  She was in intolerable pain from the bone mets.  After 2 sessions of radiation, her pain began to get much more tolerable. She had no real side effects.  She will have periodic radiation to that met for a long time as she has the most aggressive type of breast cancer - they are just trying to help with quality of life at this point.  Luckily, non small cell lung cancer is not as aggressive.  
    Chemo - my mom has gone through 2 different bouts of chemo.  The first time she did great, the second time, not so great.  One major determinant of chemo effects is the type(s) that your mom will be getting.  Do you know what chemo(s) she will be getting yet?  I also personally feel that the patient's overall health and state of mind can play a crucial part in how bad side effects can be.  With the 2nd bout of chemo, my mom was already having other health issues that got worse once chemo started.  But my mom is a VERY strong person.  She pulls through all of these health issues like a warrior.  I am happy to hear that your mom is a warrior too.  
    The best piece of advice I can give you as a caregiver/care advocate is to arm yourself with knowledge.  It was my mom's job to be the patient and my job to be the knowledgeable one and advocate for the best care she can get.  There's a lot of "crap" out there posing as lung cancer "facts" and it's hard to sift through what is good info and what is crap.  My suggestion is to start with LUNGevity's website..."Lung Cancer 101" is a great first page to check out and go from there.  Also, reach out to us.  There are so many survivors here that can likely answer just about any question you have.  We are here for you. You are not alone.
    And finally, I want to reassure you that there is hope. 5 years ago, a late stage lung cancer diagnosis was a likely death sentence, but NOT TODAY.  Get your mom going through treatment and ride the crazy roller coaster of life with lung cancer, that's all we can do.  Advocate, take good notes, and appreciate all of the time that you have left with your loved ones - something we should be doing no matter what.
    Take care,
    Steff
  6. Like
    Steff reacted to Katum31 in Mom newly diagnosed with Stage IV NSCLC   
    @Steff thank you so much for sharing your knowledge, as well as your experiences and your mom’s story. I look forward to reading it, and I appreciate you sharing so much detail to help inform others. Knowing other people’s personal stories/side effects makes understanding a little easier. 
    @LexieCat thank you so much for your response and I promise I don’t take any offense to it! I completely understand what you mean, and I would never want my mom to feel like she can’t make her own decisions. She’s extremely proactive in her diagnoses/treatment plan right now, and I would honestly be worried if she weren’t (I get my need to be in control of things from her lol). She actually might know more about her diagnoses than I do right now, and I actually expect she will eventually stumble upon this community haha. I just never want to her feel overwhelmed or stressed with which options are out there, what to do, etc. Stress won’t help, so whatever I have to do to take any burden off of her, that’s my job, and I will gladly do it. I told her that we’re all on the same team, it’s just she has unfortunately been chosen to be the star player; but, the rest of us will be making a lot of assists along the way. 
    @Susan CornettI’m actually from Louisiana (which is where mom lives), but I’ve lived in downtown Houston for the last few years. I just never thought about lung cancer being found accidentally until all of this started. You always think it starts with a cough/breathing issues. I’m definitely trying to ignore the statistics. None of the MDs have given her a “prognosis” and honestly we aren’t really interested in hearing it. She says she wants to be someone that helps in increasing the current statistics, and I believe she will!
  7. Like
    Steff got a reaction from ColleenRae in Mom newly diagnosed with Stage IV NSCLC   
    Well then, knowing your mom's specific treatment plan helps me to share more of my mom's story with you as it will be relevant...
    Pembrolizumab is another name for Keytruda - an immunotherapy.  Standard care for folks without mutations with NSCLC adenocarcinoma often includes chemo + Keytruda.  My mom did not have any mutations, but her PD-L1 expression is in the high 90%'s, so it made her a good fit for Keytruda.  So her treatment plan included 2 kinds of chemo (Carboplatin + Alimta) and Keytruda.  She did 6 sessions of chemo + Keytruda and then went on to Keytruda alone for about 6 months.  I imagine your mom's different chemo cocktail is due to her EGFR gene mutation and an Exon 20 insertion.  
    My mom's lung cancer responded to the treatment with total obliteration.  She has had no evidence of active disease for quite some time and felt immediate relief from the treatment (her cancer was on the back of her trachea and she had to have a stent to keep her trachea open, the stent was removed within a few months of beginning treatment because the tumor had shrunken so much).  Chemo has it's side effects. As I said before, my mom didn't do that great with her 2nd round of chemo.  It was a tough 6 months, but she made it through.  Keytruda has much less severe side effects for most people.  If you want, you can check out my mom's journey through her 1st year of Keytruda.  I talk about the side effects and troubles she had throughout the treatment.  You can find it    here.   I hope it provides you hope, that's my intention.
    I know that you are probably in a dark place right now, I get it.  When I reached out to these forums, I had never been so lost in my life.  These forums and the information from LUNGevity helped me find my way and helped me to advocate for my mom.  If you were to ask my mom what kind of cancer she has, she would tell you lung cancer.  She doesn't know non-small cell or adenocarcinoma.  When you ask what kind of treatment she has had, she will say a lobectomy, chemo, radiation, and Keytruda.  And that's enough information for her.  I love that your mom's only job is to get better. I have the same philosophy.  I'm an only child and my dad has dementia, so I am it when it comes to the "team" of advocates for my mom.  I hope you have more support as it's an exhausting journey.  Arm yourself with knowledge and know that you are going to second guess yourself a lot.  But that's okay.  There's no clear cut path, your mom is forging her own path as a warrior.  
  8. Like
    Steff reacted to Susan Cornett in Mom newly diagnosed with Stage IV NSCLC   
    Hi Katum and welcome. Not sure what part of H-Town you are in - I'm originally from Friendswood. Your mom's story is so similar to many others. One of my high school classmates called me in January with a similar story. She had hip pain that wouldn't stop; docs finally found a tumor and discovered it was lung cancer. She had radiation for the hip and is on an oral chemo for the primary. 
    Steff nailed it - lung cancer is just not the death sentence it once was. We've seen so many new treatments and it gives me hope. I'd like to see us get to the point of being able to treat this as a chronic disease. I strongly suggest ignoring the statistics - they just don't reflect where we are today. Stay informed and stay positive - that's the best way to move forward. We're all here for you and your mom. 
  9. Like
    Steff got a reaction from ColleenRae in Mom newly diagnosed with Stage IV NSCLC   
    Katum31,
    Hi and welcome.  So many of us know all too well the fear, anxiety, anger, and sadness you are feeling about your mom's diagnosis.  I was buried in these emotions when my mom was originally diagnosed and then even more so when she was diagnosed with her recurrence.  Like your mom, my mom is young too (61 years old at diagnosis, almost 65 now).  My mom was also a late-stage diagnosis.  Your question about what to expect is a good one...I wish I could help more, but everyone is so different when it comes to treatment side effects.  Here is what I can tell you about my experiences, maybe it will help a bit.
    Brain radiation - my mom's best friend and my uncle had cyber knife for brain mets from lung cancer - both did well with it.  The major side effect was tiredness.  My cousin's wife just had whole brain radiation and spot radiation for mets from breast cancer.  She's only in her 30's, but all she experienced was some tiredness.
    Radiation on the hip - my cousin's wife is also going through radiation for mets to her hip (breast cancer).  She was in intolerable pain from the bone mets.  After 2 sessions of radiation, her pain began to get much more tolerable. She had no real side effects.  She will have periodic radiation to that met for a long time as she has the most aggressive type of breast cancer - they are just trying to help with quality of life at this point.  Luckily, non small cell lung cancer is not as aggressive.  
    Chemo - my mom has gone through 2 different bouts of chemo.  The first time she did great, the second time, not so great.  One major determinant of chemo effects is the type(s) that your mom will be getting.  Do you know what chemo(s) she will be getting yet?  I also personally feel that the patient's overall health and state of mind can play a crucial part in how bad side effects can be.  With the 2nd bout of chemo, my mom was already having other health issues that got worse once chemo started.  But my mom is a VERY strong person.  She pulls through all of these health issues like a warrior.  I am happy to hear that your mom is a warrior too.  
    The best piece of advice I can give you as a caregiver/care advocate is to arm yourself with knowledge.  It was my mom's job to be the patient and my job to be the knowledgeable one and advocate for the best care she can get.  There's a lot of "crap" out there posing as lung cancer "facts" and it's hard to sift through what is good info and what is crap.  My suggestion is to start with LUNGevity's website..."Lung Cancer 101" is a great first page to check out and go from there.  Also, reach out to us.  There are so many survivors here that can likely answer just about any question you have.  We are here for you. You are not alone.
    And finally, I want to reassure you that there is hope. 5 years ago, a late stage lung cancer diagnosis was a likely death sentence, but NOT TODAY.  Get your mom going through treatment and ride the crazy roller coaster of life with lung cancer, that's all we can do.  Advocate, take good notes, and appreciate all of the time that you have left with your loved ones - something we should be doing no matter what.
    Take care,
    Steff
  10. Like
    Steff got a reaction from Katum31 in Mom newly diagnosed with Stage IV NSCLC   
    Well then, knowing your mom's specific treatment plan helps me to share more of my mom's story with you as it will be relevant...
    Pembrolizumab is another name for Keytruda - an immunotherapy.  Standard care for folks without mutations with NSCLC adenocarcinoma often includes chemo + Keytruda.  My mom did not have any mutations, but her PD-L1 expression is in the high 90%'s, so it made her a good fit for Keytruda.  So her treatment plan included 2 kinds of chemo (Carboplatin + Alimta) and Keytruda.  She did 6 sessions of chemo + Keytruda and then went on to Keytruda alone for about 6 months.  I imagine your mom's different chemo cocktail is due to her EGFR gene mutation and an Exon 20 insertion.  
    My mom's lung cancer responded to the treatment with total obliteration.  She has had no evidence of active disease for quite some time and felt immediate relief from the treatment (her cancer was on the back of her trachea and she had to have a stent to keep her trachea open, the stent was removed within a few months of beginning treatment because the tumor had shrunken so much).  Chemo has it's side effects. As I said before, my mom didn't do that great with her 2nd round of chemo.  It was a tough 6 months, but she made it through.  Keytruda has much less severe side effects for most people.  If you want, you can check out my mom's journey through her 1st year of Keytruda.  I talk about the side effects and troubles she had throughout the treatment.  You can find it    here.   I hope it provides you hope, that's my intention.
    I know that you are probably in a dark place right now, I get it.  When I reached out to these forums, I had never been so lost in my life.  These forums and the information from LUNGevity helped me find my way and helped me to advocate for my mom.  If you were to ask my mom what kind of cancer she has, she would tell you lung cancer.  She doesn't know non-small cell or adenocarcinoma.  When you ask what kind of treatment she has had, she will say a lobectomy, chemo, radiation, and Keytruda.  And that's enough information for her.  I love that your mom's only job is to get better. I have the same philosophy.  I'm an only child and my dad has dementia, so I am it when it comes to the "team" of advocates for my mom.  I hope you have more support as it's an exhausting journey.  Arm yourself with knowledge and know that you are going to second guess yourself a lot.  But that's okay.  There's no clear cut path, your mom is forging her own path as a warrior.  
  11. Like
    Steff got a reaction from Susan Cornett in Mom newly diagnosed with Stage IV NSCLC   
    Katum31,
    Hi and welcome.  So many of us know all too well the fear, anxiety, anger, and sadness you are feeling about your mom's diagnosis.  I was buried in these emotions when my mom was originally diagnosed and then even more so when she was diagnosed with her recurrence.  Like your mom, my mom is young too (61 years old at diagnosis, almost 65 now).  My mom was also a late-stage diagnosis.  Your question about what to expect is a good one...I wish I could help more, but everyone is so different when it comes to treatment side effects.  Here is what I can tell you about my experiences, maybe it will help a bit.
    Brain radiation - my mom's best friend and my uncle had cyber knife for brain mets from lung cancer - both did well with it.  The major side effect was tiredness.  My cousin's wife just had whole brain radiation and spot radiation for mets from breast cancer.  She's only in her 30's, but all she experienced was some tiredness.
    Radiation on the hip - my cousin's wife is also going through radiation for mets to her hip (breast cancer).  She was in intolerable pain from the bone mets.  After 2 sessions of radiation, her pain began to get much more tolerable. She had no real side effects.  She will have periodic radiation to that met for a long time as she has the most aggressive type of breast cancer - they are just trying to help with quality of life at this point.  Luckily, non small cell lung cancer is not as aggressive.  
    Chemo - my mom has gone through 2 different bouts of chemo.  The first time she did great, the second time, not so great.  One major determinant of chemo effects is the type(s) that your mom will be getting.  Do you know what chemo(s) she will be getting yet?  I also personally feel that the patient's overall health and state of mind can play a crucial part in how bad side effects can be.  With the 2nd bout of chemo, my mom was already having other health issues that got worse once chemo started.  But my mom is a VERY strong person.  She pulls through all of these health issues like a warrior.  I am happy to hear that your mom is a warrior too.  
    The best piece of advice I can give you as a caregiver/care advocate is to arm yourself with knowledge.  It was my mom's job to be the patient and my job to be the knowledgeable one and advocate for the best care she can get.  There's a lot of "crap" out there posing as lung cancer "facts" and it's hard to sift through what is good info and what is crap.  My suggestion is to start with LUNGevity's website..."Lung Cancer 101" is a great first page to check out and go from there.  Also, reach out to us.  There are so many survivors here that can likely answer just about any question you have.  We are here for you. You are not alone.
    And finally, I want to reassure you that there is hope. 5 years ago, a late stage lung cancer diagnosis was a likely death sentence, but NOT TODAY.  Get your mom going through treatment and ride the crazy roller coaster of life with lung cancer, that's all we can do.  Advocate, take good notes, and appreciate all of the time that you have left with your loved ones - something we should be doing no matter what.
    Take care,
    Steff
  12. Like
    Steff reacted to Katum31 in Mom newly diagnosed with Stage IV NSCLC   
    @Steff thank you so much for your reply and for sharing your experiences with the different treatments. I really appreciate it so very much! 
    Your mom definitely sounds like a warrior! I’m glad that she was able to push through, and I hope that she is doing well now! 
    The chemo regimen that they plan to put my mom on is carboplatin/pemetrexed/pembrolizumab. I was under the impression that we weren’t going to do immunotherapy, as the oncologist we got the second opinion from say it may interfere with clinical trials in the future... but it’s my understanding the the pembrolizumab is a type of immunotherapy treatment.  This really is all so confusing and conflicting information definitely doesn’t help. 
    Since this started I told my mom her only job through all of this was to get better and to leave everything else up to us. I’m making it my goal to learn every single thing I can about this, so I know that we are doing everything possible to get her better.
  13. Like
    Steff got a reaction from Tom Galli in Mom newly diagnosed with Stage IV NSCLC   
    Katum31,
    Hi and welcome.  So many of us know all too well the fear, anxiety, anger, and sadness you are feeling about your mom's diagnosis.  I was buried in these emotions when my mom was originally diagnosed and then even more so when she was diagnosed with her recurrence.  Like your mom, my mom is young too (61 years old at diagnosis, almost 65 now).  My mom was also a late-stage diagnosis.  Your question about what to expect is a good one...I wish I could help more, but everyone is so different when it comes to treatment side effects.  Here is what I can tell you about my experiences, maybe it will help a bit.
    Brain radiation - my mom's best friend and my uncle had cyber knife for brain mets from lung cancer - both did well with it.  The major side effect was tiredness.  My cousin's wife just had whole brain radiation and spot radiation for mets from breast cancer.  She's only in her 30's, but all she experienced was some tiredness.
    Radiation on the hip - my cousin's wife is also going through radiation for mets to her hip (breast cancer).  She was in intolerable pain from the bone mets.  After 2 sessions of radiation, her pain began to get much more tolerable. She had no real side effects.  She will have periodic radiation to that met for a long time as she has the most aggressive type of breast cancer - they are just trying to help with quality of life at this point.  Luckily, non small cell lung cancer is not as aggressive.  
    Chemo - my mom has gone through 2 different bouts of chemo.  The first time she did great, the second time, not so great.  One major determinant of chemo effects is the type(s) that your mom will be getting.  Do you know what chemo(s) she will be getting yet?  I also personally feel that the patient's overall health and state of mind can play a crucial part in how bad side effects can be.  With the 2nd bout of chemo, my mom was already having other health issues that got worse once chemo started.  But my mom is a VERY strong person.  She pulls through all of these health issues like a warrior.  I am happy to hear that your mom is a warrior too.  
    The best piece of advice I can give you as a caregiver/care advocate is to arm yourself with knowledge.  It was my mom's job to be the patient and my job to be the knowledgeable one and advocate for the best care she can get.  There's a lot of "crap" out there posing as lung cancer "facts" and it's hard to sift through what is good info and what is crap.  My suggestion is to start with LUNGevity's website..."Lung Cancer 101" is a great first page to check out and go from there.  Also, reach out to us.  There are so many survivors here that can likely answer just about any question you have.  We are here for you. You are not alone.
    And finally, I want to reassure you that there is hope. 5 years ago, a late stage lung cancer diagnosis was a likely death sentence, but NOT TODAY.  Get your mom going through treatment and ride the crazy roller coaster of life with lung cancer, that's all we can do.  Advocate, take good notes, and appreciate all of the time that you have left with your loved ones - something we should be doing no matter what.
    Take care,
    Steff
  14. Like
    Steff got a reaction from LexieCat in Mom newly diagnosed with Stage IV NSCLC   
    Katum31,
    Hi and welcome.  So many of us know all too well the fear, anxiety, anger, and sadness you are feeling about your mom's diagnosis.  I was buried in these emotions when my mom was originally diagnosed and then even more so when she was diagnosed with her recurrence.  Like your mom, my mom is young too (61 years old at diagnosis, almost 65 now).  My mom was also a late-stage diagnosis.  Your question about what to expect is a good one...I wish I could help more, but everyone is so different when it comes to treatment side effects.  Here is what I can tell you about my experiences, maybe it will help a bit.
    Brain radiation - my mom's best friend and my uncle had cyber knife for brain mets from lung cancer - both did well with it.  The major side effect was tiredness.  My cousin's wife just had whole brain radiation and spot radiation for mets from breast cancer.  She's only in her 30's, but all she experienced was some tiredness.
    Radiation on the hip - my cousin's wife is also going through radiation for mets to her hip (breast cancer).  She was in intolerable pain from the bone mets.  After 2 sessions of radiation, her pain began to get much more tolerable. She had no real side effects.  She will have periodic radiation to that met for a long time as she has the most aggressive type of breast cancer - they are just trying to help with quality of life at this point.  Luckily, non small cell lung cancer is not as aggressive.  
    Chemo - my mom has gone through 2 different bouts of chemo.  The first time she did great, the second time, not so great.  One major determinant of chemo effects is the type(s) that your mom will be getting.  Do you know what chemo(s) she will be getting yet?  I also personally feel that the patient's overall health and state of mind can play a crucial part in how bad side effects can be.  With the 2nd bout of chemo, my mom was already having other health issues that got worse once chemo started.  But my mom is a VERY strong person.  She pulls through all of these health issues like a warrior.  I am happy to hear that your mom is a warrior too.  
    The best piece of advice I can give you as a caregiver/care advocate is to arm yourself with knowledge.  It was my mom's job to be the patient and my job to be the knowledgeable one and advocate for the best care she can get.  There's a lot of "crap" out there posing as lung cancer "facts" and it's hard to sift through what is good info and what is crap.  My suggestion is to start with LUNGevity's website..."Lung Cancer 101" is a great first page to check out and go from there.  Also, reach out to us.  There are so many survivors here that can likely answer just about any question you have.  We are here for you. You are not alone.
    And finally, I want to reassure you that there is hope. 5 years ago, a late stage lung cancer diagnosis was a likely death sentence, but NOT TODAY.  Get your mom going through treatment and ride the crazy roller coaster of life with lung cancer, that's all we can do.  Advocate, take good notes, and appreciate all of the time that you have left with your loved ones - something we should be doing no matter what.
    Take care,
    Steff
  15. Like
    Steff got a reaction from Katum31 in Mom newly diagnosed with Stage IV NSCLC   
    Katum31,
    Hi and welcome.  So many of us know all too well the fear, anxiety, anger, and sadness you are feeling about your mom's diagnosis.  I was buried in these emotions when my mom was originally diagnosed and then even more so when she was diagnosed with her recurrence.  Like your mom, my mom is young too (61 years old at diagnosis, almost 65 now).  My mom was also a late-stage diagnosis.  Your question about what to expect is a good one...I wish I could help more, but everyone is so different when it comes to treatment side effects.  Here is what I can tell you about my experiences, maybe it will help a bit.
    Brain radiation - my mom's best friend and my uncle had cyber knife for brain mets from lung cancer - both did well with it.  The major side effect was tiredness.  My cousin's wife just had whole brain radiation and spot radiation for mets from breast cancer.  She's only in her 30's, but all she experienced was some tiredness.
    Radiation on the hip - my cousin's wife is also going through radiation for mets to her hip (breast cancer).  She was in intolerable pain from the bone mets.  After 2 sessions of radiation, her pain began to get much more tolerable. She had no real side effects.  She will have periodic radiation to that met for a long time as she has the most aggressive type of breast cancer - they are just trying to help with quality of life at this point.  Luckily, non small cell lung cancer is not as aggressive.  
    Chemo - my mom has gone through 2 different bouts of chemo.  The first time she did great, the second time, not so great.  One major determinant of chemo effects is the type(s) that your mom will be getting.  Do you know what chemo(s) she will be getting yet?  I also personally feel that the patient's overall health and state of mind can play a crucial part in how bad side effects can be.  With the 2nd bout of chemo, my mom was already having other health issues that got worse once chemo started.  But my mom is a VERY strong person.  She pulls through all of these health issues like a warrior.  I am happy to hear that your mom is a warrior too.  
    The best piece of advice I can give you as a caregiver/care advocate is to arm yourself with knowledge.  It was my mom's job to be the patient and my job to be the knowledgeable one and advocate for the best care she can get.  There's a lot of "crap" out there posing as lung cancer "facts" and it's hard to sift through what is good info and what is crap.  My suggestion is to start with LUNGevity's website..."Lung Cancer 101" is a great first page to check out and go from there.  Also, reach out to us.  There are so many survivors here that can likely answer just about any question you have.  We are here for you. You are not alone.
    And finally, I want to reassure you that there is hope. 5 years ago, a late stage lung cancer diagnosis was a likely death sentence, but NOT TODAY.  Get your mom going through treatment and ride the crazy roller coaster of life with lung cancer, that's all we can do.  Advocate, take good notes, and appreciate all of the time that you have left with your loved ones - something we should be doing no matter what.
    Take care,
    Steff
  16. Like
    Steff reacted to Robert Macaulay in Durvalumab   
    Hi All
    Just got back from Victoria and my temperature light came on one hour into the drive lucky there was gas station nearby as the temp gauge stayed steady topped the bottle up and hoped for the best and that solved the problem the rest of the way down and all the way home.
    Seen the Doc and her resident assistant and the were very pleased with the Ct scan as it showed no progression and the tumour shows slight decrease since the last scan in July, She also said my lung were still bit inflamed but that is from the radiation and is normal. Both were very pleased with my condition and blood work i only now see the doctor once month during infusions instead of bi-weekly. She has scheduled another Ct scan in three months time and told me not to bother coming down to the clinic as she will call me at home with the results.
    One thing the resident doctor mentioned i thought was intresting this drug works for a very long time after your finished the treatment.On infusion number six this week and no side effects at all but he said the can come at any time so onward to the six month mark which is piece cake compared to a full dose of chemo. lol
    Bob
  17. Like
    Steff reacted to Susan N. in Newly joined.   
    Hi Cannedy,
    Thanks for asking. I am feeling a lot better than a few weeks ago, no more fever and cough.
    I am taking Tagrisso. After 45 days of taking it, my tumor went down from 2.5cm to 1.5 cm.
    Susan.
  18. Like
    Steff reacted to Robert Macaulay in Durvalumab   
    Hi Kleo
    I Do not worry about wonders I will be very happy to complete the full year of treatment as planned. Right now CT scan  in November and meet the doctor so go from there, They were happy with my previous treatment so I see no reason this will be any different but each individual can be very different in this game of medicine. I am very fortunate as all the treatment cost are covered at no charge to me and that is very substantial over the course of this type of treatment. The doctor did go over the side effects and seem no different from the previous chemo so the way I look at it  Que sera sera    lol
    Bob    
  19. Like
    Steff got a reaction from LaurenH in Newly joined.   
    Hi Susan
    I'm very sorry to hear about your diagnosis. A cancer diagnosis is a punch in the gut for everyone involved. So many unanswered questions and so many unknowns.  You are in good company here.  There are many late stage lung cancer survivors who will be introducing themselves soon.  The diagnosis, staging, and other various testing always seem to take forever. That was the worst part in dealing with my mom's diagnosis - the waiting.  I am glad you found this site. The Lungevity site has a lot of helpful, easy-to-read info that most of us here have benefited from.  We are here to help you navigate through this challenging time in your life.  
    Take Care,
    Steff
  20. Like
    Steff got a reaction from LexieCat in Newly joined.   
    Hi Susan
    I'm very sorry to hear about your diagnosis. A cancer diagnosis is a punch in the gut for everyone involved. So many unanswered questions and so many unknowns.  You are in good company here.  There are many late stage lung cancer survivors who will be introducing themselves soon.  The diagnosis, staging, and other various testing always seem to take forever. That was the worst part in dealing with my mom's diagnosis - the waiting.  I am glad you found this site. The Lungevity site has a lot of helpful, easy-to-read info that most of us here have benefited from.  We are here to help you navigate through this challenging time in your life.  
    Take Care,
    Steff
  21. Like
    Steff got a reaction from BridgetO in Newly joined.   
    Hi Susan
    I'm very sorry to hear about your diagnosis. A cancer diagnosis is a punch in the gut for everyone involved. So many unanswered questions and so many unknowns.  You are in good company here.  There are many late stage lung cancer survivors who will be introducing themselves soon.  The diagnosis, staging, and other various testing always seem to take forever. That was the worst part in dealing with my mom's diagnosis - the waiting.  I am glad you found this site. The Lungevity site has a lot of helpful, easy-to-read info that most of us here have benefited from.  We are here to help you navigate through this challenging time in your life.  
    Take Care,
    Steff
  22. Like
    Steff reacted to augie57201 in CALLING ALL LC SURVIVORS!!!   
    I was diagnosed October 2016 stage four lung cancer. Praise the Lord. My last scan showed no sign of cancer 
  23. Like
    Steff got a reaction from LaurenH in new to this   
    Simeon,
    Lobectomies are a common treatment for cancer, the fact that the lymph nodes were clear of cancer is really good news!!  My mom had a right, upper lobectomy as well, she was 61 years old at the time and has multiple other health issues.  Her recovery from the surgery was a long road, but she recovered fully and had been breathing better than she had in a long time because most of the COPD that she had was in the lobe they removed.  As far as being active to help recovery, "active" will probably look very different for her for awhile.  Her body needs to adjust to not only having a portion of a major organ removed, but also will learn how to deal with having less lung capacity - for many people, they do just fine with a lobe or entire side of a lung removed.  She just needs to get used to it.  She also just went through major surgery, so there will be pain and loss of energy just from the surgery.  She also may be affected by the infection, so be patient with her.  Be sure that if she isn't up and moving much that she is doing any breathing "exercises" that her doc suggested or that were being done while in the hospital - this will help from getting pneumonia.  If she get's a tiny bit better every day, that's moving in a positive direction...it's just a long process.
    Helpless is a feeling we all feel whether we are the patient or the caregiver.  Every. Single. Thing. is taken out of our control when we are dealing with cancer, we've all felt as you do and many of us still feel completely helpless.  Will your girlfriend be receiving any type of treatment for the cancer in her breast?
  24. Like
    Steff got a reaction from LaurenH in new to this   
    Don't worry Simeon, we will get any message that you post on these forums. Many of us use the "Unread Content" button on the forum's main page. So no matter what topic you post in, we will see your message. We are in all different time zones throughout the world, so there may be a short delay in someone responding to you, but we will respond. Hope all is okay.
  25. Like
    Steff got a reaction from Tom Galli in new to this   
    Simeon,
    Lobectomies are a common treatment for cancer, the fact that the lymph nodes were clear of cancer is really good news!!  My mom had a right, upper lobectomy as well, she was 61 years old at the time and has multiple other health issues.  Her recovery from the surgery was a long road, but she recovered fully and had been breathing better than she had in a long time because most of the COPD that she had was in the lobe they removed.  As far as being active to help recovery, "active" will probably look very different for her for awhile.  Her body needs to adjust to not only having a portion of a major organ removed, but also will learn how to deal with having less lung capacity - for many people, they do just fine with a lobe or entire side of a lung removed.  She just needs to get used to it.  She also just went through major surgery, so there will be pain and loss of energy just from the surgery.  She also may be affected by the infection, so be patient with her.  Be sure that if she isn't up and moving much that she is doing any breathing "exercises" that her doc suggested or that were being done while in the hospital - this will help from getting pneumonia.  If she get's a tiny bit better every day, that's moving in a positive direction...it's just a long process.
    Helpless is a feeling we all feel whether we are the patient or the caregiver.  Every. Single. Thing. is taken out of our control when we are dealing with cancer, we've all felt as you do and many of us still feel completely helpless.  Will your girlfriend be receiving any type of treatment for the cancer in her breast?
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