Steff

Katie B. and I were interviewed for local news today. The story was about the stigma associated with LC. We can chip away at the stigma a little more each day...

Saw this on the noon local news.  They were a saying also A Breath Of Hope Lung Foundation is having a fund raiser Sunday 11/5 at Orchestra Hall here.
The foundation supports Research of Lung Cancer, a support program for those with Lung Cancer  and an Awareness program.
They said smoking is not always the cause, It is a cruel stigma, and inaccurate.
They said 2500 people die every year here in Minnesota from Lung cancer.  More than all other cancers combined ! 
The Oncologist was super concerned with finding an early detection and cures.
 
http://minnesota.cbslocal.com/video/category/news/3754081-fighting-the-stigma-around-lung-cancer/
 
http://abreathofhope.org/
 
Donna G

Howdy Si,
I too am a caregiver - for my mother who is currently battling NSCLC.  Please feel free to reach out if you have questions, need to vent, or just need some support.  We are here for you.
Take Care,
Steff

Karen, 
Although my mom has a different story to begin with, she is now taking keytruda as your mom has started to. Here is her story...
Since my mom's cancer recurrence is unable to be surgically removed, she is receiving chemo + keytruda. Since your mom has had such a tough time with chemo, that is likely why she isn't receiving the combo right now. The chemo this time is really kicking my mom's butt too - severe fatigue and flu-like symptoms and anemia. She didn't have any trouble last time with chemo.
I wasn't happy to hear about my mom receiving immunotherapy versus the original treatment types at first. But now that I have done more research about immunotherapy / keytruda I am happy that she has this treatment option available to her. In fact if her original diagnosis a few years ago would have been today she would have received keytruda as a first-line treatment because it is doing such wonderful things.
With Keytruda, your mom may have the same benefits of chemotherapy without the harsh side effects, that can result in the mass shrinking so that she can have it radiated. And as long as keytruda is working, she can stay on the drug forever. My aunt has been on keyyruda for 2 years, she receives the drug for advanced stage lymphoma. She is in her mid-sixties and is a full-time third grade teacher. The only side effect that she has is skin pigmentation changes and fatigue. But the fatigue is not enough to keep her from chasing after third-graders all day.
My mom just finished her 5th chemo plus keytruda treatment. The side effects that she has battled so far are fatigue, but that is likely from chemo, and skin pigment changes which have been no big deal. And so far the treatment is working, her tumor has shrunk after four treatment Cycles.
I am happy to hear that your mom has you and your sister relatively close. I live a little over an hour away from my mom and when I am able to visit or take her to treatments it makes all the difference in the world. And although your mom's battle has changed its course in treatment, don't give up. There are so many different treatment options out there now for your mom's type of cancer. I am so very sorry you and your family are having to endure this battle but moms are tough and so are daughters.  
I'm glad you found this site and have posted...this site was extremely helpful to me and the forums are wonderful.
Take care, 
Steff

Karen, 
Although my mom has a different story to begin with, she is now taking keytruda as your mom has started to. Here is her story...
Since my mom's cancer recurrence is unable to be surgically removed, she is receiving chemo + keytruda. Since your mom has had such a tough time with chemo, that is likely why she isn't receiving the combo right now. The chemo this time is really kicking my mom's butt too - severe fatigue and flu-like symptoms and anemia. She didn't have any trouble last time with chemo.
I wasn't happy to hear about my mom receiving immunotherapy versus the original treatment types at first. But now that I have done more research about immunotherapy / keytruda I am happy that she has this treatment option available to her. In fact if her original diagnosis a few years ago would have been today she would have received keytruda as a first-line treatment because it is doing such wonderful things.
With Keytruda, your mom may have the same benefits of chemotherapy without the harsh side effects, that can result in the mass shrinking so that she can have it radiated. And as long as keytruda is working, she can stay on the drug forever. My aunt has been on keyyruda for 2 years, she receives the drug for advanced stage lymphoma. She is in her mid-sixties and is a full-time third grade teacher. The only side effect that she has is skin pigmentation changes and fatigue. But the fatigue is not enough to keep her from chasing after third-graders all day.
My mom just finished her 5th chemo plus keytruda treatment. The side effects that she has battled so far are fatigue, but that is likely from chemo, and skin pigment changes which have been no big deal. And so far the treatment is working, her tumor has shrunk after four treatment Cycles.
I am happy to hear that your mom has you and your sister relatively close. I live a little over an hour away from my mom and when I am able to visit or take her to treatments it makes all the difference in the world. And although your mom's battle has changed its course in treatment, don't give up. There are so many different treatment options out there now for your mom's type of cancer. I am so very sorry you and your family are having to endure this battle but moms are tough and so are daughters.  
I'm glad you found this site and have posted...this site was extremely helpful to me and the forums are wonderful.
Take care, 
Steff

Thanks Steff... I belong to the FB group Lungevity  EGFR. One of the admins from here posted about the lady and her mom, asking if Afatinib users could connect with her here (which i have done). I didn't know this group existed until today. Glad to have found it! ♡♡

Hooray! Things are looking up!  I hope that the two of you can have a restful weekend after receiving good results.
Like you said, reaction to radiation is different for everyone.  My mom was dealing with a very small area that was being radiated and her pain was much less after the first week or so (5-7 sessions).  She was also receiving chemo while receiving radiation.

WOW, I am so happy to hear that there is another treatment possibility for him.  I wish you and your husband the best in this new part of your journey.  Maybe you can get books on tape/cd/etc to make the long trip a bit more bearable?? Take care!

We got good news yesterday no mets to the brain.  Dr. is prescribing another medication for the pain--stronger he said it still might make him sleepy.  I certainly hope the radiation eases the pain he starts this Tuesday--does anyone know how long it usually takes for pain relief I know everyone is different but trying to get a general idea.  He told me yesterday no pain on the left side where he had rib fractures from the fall--that's good too.
Thanks for all the good thoughts

Hi there,
Sorry you are frustrated (rightly so).  Waiting is the worst, especially when our loved one is struggling with medical issues.  I just wanted to chime in on the lung inflation - my mom just had a mostly collapsed lung due to a large plueral effusion (she hardly had any breath sounds in her right lobe, which is missing the upper lobe).  She was in the hospital for 2 weeks until they were able to successfully drain the fluid and get her on her feet again.  Her lung was partially deflated for much longer - we are suspecting at least 3 weeks.  When she had her upper lobe removed a few years back, her right lobe was deflated for a few days and it naturally re-inflated on it's own.  So my overall message is that within a reasonable amount of time, lungs can re-inflate, even on their own.  Perhaps once the stent is placed, the lung could re-inflate on it's own, but it's not a big deal if they have to help it.  
Best wishes for you and your husband...sorry you are playing the waiting game. Please know that we are here any time you need to vent or have questions, no need to bang your head!

Hi Holly,
I may be completely out of line commenting on your post because I am a caregiver, not the warrior.  My mom lost her hair about 2 years ago when going through her first fight of lung cancer.  She's always had short hair and really isn't attached to it, so losing it was not a huge deal for her.  I shaved her head when she couldn't handle the shedding anymore (hair falling into her food was the breaking point for her) and it was the most intimate time.  It was a way to "pamper" her and save her from having to do it herself or go to a salon.  She never lost her eyebrows and her eyelashes fell out after treatment was over and were gone for about a month.  A few things that she really likes now - her hair grew back wavy (which she has always wanted), and her leg hair is still mostly gone (fabulous during swimming season!!).  She got a free wig from an agency that helps with those things, but only wore it once.  The one thing she really used the most was a soft knitted beanie.  Her head got cold easily and she wore it all day at home and especially when she slept.
 

All Over the Place:
Here are the basic definitions of targeted therapy and Immunotherapy - they are different, but both can be equally effective.  I've also included the links to the Lungevity pages that have more information.
Targeted cancer therapies are a type of biological therapy that aims to target cancer cells directly. They target certain parts of cells and the signals that cause cancer cells to grow uncontrollably and thrive. These drugs are often grouped by how they work or what part of the cell they target. https://www.lungevity.org/for-patients-caregivers/lung-cancer-101/treatment-options/targeted-therapy
Immunotherapy is considered a type of biological therapy. It aims to enhance the body’s immune response and stop lung cancers from escaping from the immune system. Immunotherapy is a treatment that strengthens the natural ability of the patient’s immune system to fight cancer. Instead of targeting the person’s cancer cells directly, immunotherapy trains a person’s natural immune system to recognize cancer cells and selectively target and kill them. https://www.lungevity.org/for-patients-caregivers/lung-cancer-101/treatment-options/immunotherapy
I'm not sure that someone would receive both targeted therapy and immunotherapy, but I have heard of people receiving radiation and immunotherapy at the same time.  And Keytruda (which is an immunotherapy for those with the PD-L1 mutation) is now recommended to have chemo combined with it during the first 8 or so treatments.
The doctor may not be considering radiation at this point because they are considering surgery.  For my mom's situation, if they would have been able to remove the final lymph node that was involved, she would have not had any follow up treatments.  But be sure to ask why they are choosing this specific treatment plan. If they do not give you and your mom an answer you understand, continue to ask questions until you do understand. And never be afraid of looking for a second opinion.

Hi Diamond,
I am sorry to hear about your father. I too, have a mother battling lung cancer - a recurrence of NSCLC. My mom is quite strong, as many mother are, but there are days that I see she is tired.  She is also a caregiver for my dad who is disabled due to a movement disorder. I feel your pain, fear, and sadness.  I'm not sure if you live in the U.S. but if you do and haven't gotten in contact with a local agency on aging, they can be a big help.  My mom works with our local Aging and adult Care office and they have been really helpful for her - providing various supplies and education on what's available to them.  She still refuses to get a caregiver for my dad as she still wants to do as much as possible, but knows that the option is there.  

All Over the Place:
Here are the basic definitions of targeted therapy and Immunotherapy - they are different, but both can be equally effective.  I've also included the links to the Lungevity pages that have more information.
Targeted cancer therapies are a type of biological therapy that aims to target cancer cells directly. They target certain parts of cells and the signals that cause cancer cells to grow uncontrollably and thrive. These drugs are often grouped by how they work or what part of the cell they target. https://www.lungevity.org/for-patients-caregivers/lung-cancer-101/treatment-options/targeted-therapy
Immunotherapy is considered a type of biological therapy. It aims to enhance the body’s immune response and stop lung cancers from escaping from the immune system. Immunotherapy is a treatment that strengthens the natural ability of the patient’s immune system to fight cancer. Instead of targeting the person’s cancer cells directly, immunotherapy trains a person’s natural immune system to recognize cancer cells and selectively target and kill them. https://www.lungevity.org/for-patients-caregivers/lung-cancer-101/treatment-options/immunotherapy
I'm not sure that someone would receive both targeted therapy and immunotherapy, but I have heard of people receiving radiation and immunotherapy at the same time.  And Keytruda (which is an immunotherapy for those with the PD-L1 mutation) is now recommended to have chemo combined with it during the first 8 or so treatments.
The doctor may not be considering radiation at this point because they are considering surgery.  For my mom's situation, if they would have been able to remove the final lymph node that was involved, she would have not had any follow up treatments.  But be sure to ask why they are choosing this specific treatment plan. If they do not give you and your mom an answer you understand, continue to ask questions until you do understand. And never be afraid of looking for a second opinion.

Hi Diamond,
I am sorry to hear about your father. I too, have a mother battling lung cancer - a recurrence of NSCLC. My mom is quite strong, as many mother are, but there are days that I see she is tired.  She is also a caregiver for my dad who is disabled due to a movement disorder. I feel your pain, fear, and sadness.  I'm not sure if you live in the U.S. but if you do and haven't gotten in contact with a local agency on aging, they can be a big help.  My mom works with our local Aging and adult Care office and they have been really helpful for her - providing various supplies and education on what's available to them.  She still refuses to get a caregiver for my dad as she still wants to do as much as possible, but knows that the option is there.  

Bes-
It's not all that uncommon for lung cancer masses or nodules to be "hidden" on xrays because there are so many different things they can hide behind.  CT's do a much better job at helping docs see them.  My mom is a great example - her "1 year all clear" chest xray looked "normal". After continued shortness of breath, her new pulmonary doc began reviewing scans and xrays. He saw something on her "all clear" chest xray. They decided to take a better look and found cancer behind her trachea that was closing off 70% of her airway.  A CT shows it better, but it is still really hard to see even then.  We were truly angry for a long time and are probably still a bit angry that it had been missed for over a year and 3 follow-up chest xrays.  But all we could do was get over it and move-on so we could deal with her treatment and recovery.  Luckily, her cancer supposedly has not spread, so we are grateful, but not everyone is that lucky.  All that I can say going forward, is to continue to push for answers should a new symptom arise and there has not been an explanation for it - and don't always accept the "It's just chemo/radiation/other treatment side effects" answer because it's not always due to side effects.  My mom recently spent 2 weeks in the hospital because of pneumonia and a pleural effusion in which they drained over 2 liters - this was also missed by a chest xray.  My mom used to be nervous about "crying wolf" but we are to the point that her health is way more important than worrying if we are pestering her docs.  What I've learned from all of this is to always ask questions and should you have other questions after your appointments, contact your docs and ask them.  

I'm here, letting you know that I can relate...feeling alone, can't sleep, feeling the desperate need to learn everything about lung cancer as quickly as possible, and scared to death of the unknown. My mother has adenocarcinoma as well. She was originally diagnosed in 2014. She is now battling a recurrence of lung cancer. Please believe me when I say that it WILL get better. The initial waiting and initial diagnosis seems almost worse than the treatments themselves. Now that you have found us, you are not alone. Everyone who has ever responded to my posts on these forums have helped me feel better with words of encouragement and sharing their personal experience and knowledge. Please reach out to us, we are here for you. I am sorry you and your family are having to deal with all of this. Sending hugs your way.

Hi there,
Sorry you are frustrated (rightly so).  Waiting is the worst, especially when our loved one is struggling with medical issues.  I just wanted to chime in on the lung inflation - my mom just had a mostly collapsed lung due to a large plueral effusion (she hardly had any breath sounds in her right lobe, which is missing the upper lobe).  She was in the hospital for 2 weeks until they were able to successfully drain the fluid and get her on her feet again.  Her lung was partially deflated for much longer - we are suspecting at least 3 weeks.  When she had her upper lobe removed a few years back, her right lobe was deflated for a few days and it naturally re-inflated on it's own.  So my overall message is that within a reasonable amount of time, lungs can re-inflate, even on their own.  Perhaps once the stent is placed, the lung could re-inflate on it's own, but it's not a big deal if they have to help it.  
Best wishes for you and your husband...sorry you are playing the waiting game. Please know that we are here any time you need to vent or have questions, no need to bang your head!

Hi there,
Sorry you are frustrated (rightly so).  Waiting is the worst, especially when our loved one is struggling with medical issues.  I just wanted to chime in on the lung inflation - my mom just had a mostly collapsed lung due to a large plueral effusion (she hardly had any breath sounds in her right lobe, which is missing the upper lobe).  She was in the hospital for 2 weeks until they were able to successfully drain the fluid and get her on her feet again.  Her lung was partially deflated for much longer - we are suspecting at least 3 weeks.  When she had her upper lobe removed a few years back, her right lobe was deflated for a few days and it naturally re-inflated on it's own.  So my overall message is that within a reasonable amount of time, lungs can re-inflate, even on their own.  Perhaps once the stent is placed, the lung could re-inflate on it's own, but it's not a big deal if they have to help it.  
Best wishes for you and your husband...sorry you are playing the waiting game. Please know that we are here any time you need to vent or have questions, no need to bang your head!

Bes-
It's not all that uncommon for lung cancer masses or nodules to be "hidden" on xrays because there are so many different things they can hide behind.  CT's do a much better job at helping docs see them.  My mom is a great example - her "1 year all clear" chest xray looked "normal". After continued shortness of breath, her new pulmonary doc began reviewing scans and xrays. He saw something on her "all clear" chest xray. They decided to take a better look and found cancer behind her trachea that was closing off 70% of her airway.  A CT shows it better, but it is still really hard to see even then.  We were truly angry for a long time and are probably still a bit angry that it had been missed for over a year and 3 follow-up chest xrays.  But all we could do was get over it and move-on so we could deal with her treatment and recovery.  Luckily, her cancer supposedly has not spread, so we are grateful, but not everyone is that lucky.  All that I can say going forward, is to continue to push for answers should a new symptom arise and there has not been an explanation for it - and don't always accept the "It's just chemo/radiation/other treatment side effects" answer because it's not always due to side effects.  My mom recently spent 2 weeks in the hospital because of pneumonia and a pleural effusion in which they drained over 2 liters - this was also missed by a chest xray.  My mom used to be nervous about "crying wolf" but we are to the point that her health is way more important than worrying if we are pestering her docs.  What I've learned from all of this is to always ask questions and should you have other questions after your appointments, contact your docs and ask them.  

Hi Jane,
I am sorry to hear that you and your husband are having to travel along the scary journey called lung cancer.  I too, am a caregiver - for my mother with a recurrence of lung cancer.  She is currently on chemo and Keytruda.  I know how you are feeling and many others on these forums do as well.  I reached out to this group a few months ago and they have been a great help, both for increased knowledge and hope.  There are many survivors on here as well.
Please know that you and your husband are not alone in this - we are here for you.  This site is not only helpful with all the discussion forums, there is also a great amount of information about the different kinds of lung cancers and treatments that are easy to read and understand.  Is there any specific help/support you are looking for?
Thinking of you,
Steff

Anna,
If you and your husband are wanting to pursue the surgery option, I suggest a second opinion. My mom has similar health issues and her surgeon did not even blink at the idea of a lobectomy. And she did fine with the surgery.
In most cases, you can start the 1st recommended treatment while you await a second opinion,  but you will want to double check with the docs.
I  assume your husband had a biopsy??? If so, was his cancer tested for any mutations or other biomarkers? Some immunotherapies are now considered to be first line treatment for those who meet the criteria.

Deanna,
I am so very sorry that you and your family are having to deal with this dreaded journey.  Hopefully docs are able to come up with an effective treatment plan that makes all parties satisfied.  There are many treatment options besides surgery and chemo/radiation.  In fact, there are now immunotherapies that are being used for first line treatment and are more effective than chemo.  To find out all of the options available to your dad, make sure they do a bio-marker/gene mutation test on his biopsy.  That will tell you what, if any, other types of treatment is possible.  make sure you are also finding out what type of lung cancer he has (small cell, non-small cell, etc).  This way you can begin to do your own research, if you like.
When my mom was first diagnosed with her recurrence of non-small cell lung cancer, I used some of the questionnaires on the Lungevity website to help guide me in my query with the docs.  There is a lot of great information on the Lungevity website, along with these wonderful forums.  As far as where you should post, feel free to post where ever.  I see that the Introduce yourself forum gets the most action.  Some people just continue their posts on the thread of their original post, others post in specific forums.  No matter where you post, we will find you (I don't mean that to sound scary!!). There is a button to push to see Unread Content.  Many of us use that to find new postings.
Please reach out when you have questions or need to vent...this is a great place to do both.  Also, don't be afraid to look around...many people's stories have been very helpful for me when looking for information on my mom.
Take care, best wishes for you and your family. 

Deanna,
I am so very sorry that you and your family are having to deal with this dreaded journey.  Hopefully docs are able to come up with an effective treatment plan that makes all parties satisfied.  There are many treatment options besides surgery and chemo/radiation.  In fact, there are now immunotherapies that are being used for first line treatment and are more effective than chemo.  To find out all of the options available to your dad, make sure they do a bio-marker/gene mutation test on his biopsy.  That will tell you what, if any, other types of treatment is possible.  make sure you are also finding out what type of lung cancer he has (small cell, non-small cell, etc).  This way you can begin to do your own research, if you like.
When my mom was first diagnosed with her recurrence of non-small cell lung cancer, I used some of the questionnaires on the Lungevity website to help guide me in my query with the docs.  There is a lot of great information on the Lungevity website, along with these wonderful forums.  As far as where you should post, feel free to post where ever.  I see that the Introduce yourself forum gets the most action.  Some people just continue their posts on the thread of their original post, others post in specific forums.  No matter where you post, we will find you (I don't mean that to sound scary!!). There is a button to push to see Unread Content.  Many of us use that to find new postings.
Please reach out when you have questions or need to vent...this is a great place to do both.  Also, don't be afraid to look around...many people's stories have been very helpful for me when looking for information on my mom.
Take care, best wishes for you and your family. 

Deanna,
I am so very sorry that you and your family are having to deal with this dreaded journey.  Hopefully docs are able to come up with an effective treatment plan that makes all parties satisfied.  There are many treatment options besides surgery and chemo/radiation.  In fact, there are now immunotherapies that are being used for first line treatment and are more effective than chemo.  To find out all of the options available to your dad, make sure they do a bio-marker/gene mutation test on his biopsy.  That will tell you what, if any, other types of treatment is possible.  make sure you are also finding out what type of lung cancer he has (small cell, non-small cell, etc).  This way you can begin to do your own research, if you like.
When my mom was first diagnosed with her recurrence of non-small cell lung cancer, I used some of the questionnaires on the Lungevity website to help guide me in my query with the docs.  There is a lot of great information on the Lungevity website, along with these wonderful forums.  As far as where you should post, feel free to post where ever.  I see that the Introduce yourself forum gets the most action.  Some people just continue their posts on the thread of their original post, others post in specific forums.  No matter where you post, we will find you (I don't mean that to sound scary!!). There is a button to push to see Unread Content.  Many of us use that to find new postings.
Please reach out when you have questions or need to vent...this is a great place to do both.  Also, don't be afraid to look around...many people's stories have been very helpful for me when looking for information on my mom.
Take care, best wishes for you and your family.