Stage IV Lung Cancer for Over Four Years

I come to these message boards once in a while just to look up something in particular.  Tonight I started reading a series of postings related to the frustration that can be felt by family members when their loved ones are in denial.  It is true that cancer is a terminal disease and when my husband was diagnosed with Stage IV NSLC I immediately started to plan for his impending death.  I told myself that I needed to focus on him for now and that since he didn't have long to live I could make up time in my life later.  That was over four years ago.  I think my husband was lucky.  They did not discover the lymph node involvement until after they had removed one of his lungs.  They found cancer in the lymph nodes under his lung, not the ones they tested prior to taking out the lung.  I am a firm believer that removing the primary tumor has extended my husbands life.  However, he did get brain mets soon after he was diagnosed.  They gave him whole brain radiation and stereotactic radiation about three years ago.  At the time, I was expecting terrible side effects within a year.  They never really happened.  He isn't quite as sharp as he was before, but he is still able to function normally, drive, take care of his personal business, etc.  He has been through several rounds of chemo for various metastis around his body.  They shrink up for a while and then eventually come back.  He then gets switched to another medication.  This has been going on for over four years. 

The point I am trying to make is that treatment for lung cancer has gotten better in the last few years.  You cannot expect your loved one to die within a short period of time.  You may need to plan on them living with it for years.  That can be hard also.  As much as I love my husband, I feel like my life has been on hold for years now.  In retrospect, I should have continued focusing more on my career and other aspects of my life a little more than I did.  My husband always encouraged me to do so.  He has never been pessimistic at all.  He thanks God when he is well for making him well and he thanks God when things are bad for giving him the opportunity to earn more blessings in this life for his preparation for the next life. 

There is no way to tell.  I wish the best for you all.

 

Hi... My name is Donna, I am 26 years old. I am going to spill my life story to you because you are currently going through the same things that I am in a way. My father was told in July 2008 he had stage 3B Non-small cell lung cancer..  He went through  6 weeks of radiation (5 days a week) and once a week Chemo to help the radiation along. At the early part of August 2009, he was told that the cancer was still there and the dr gave him 6-12 months.. He opted to do the chemo that would give him the better quality of life, 3 days later he ended up in the hospital for a week. His blood pressure dropped to 70/40..My older sister and I were trying to get him to her car to take him to the hospital, and he collapsed in the driveway.. Completly non responsive.. The chemo gave him a heart attack. Now he is just starting the at home pill form of the chemo. My father served in the navy for 8 years and he is being taken care of at McGuire VA hospital. There are no support groups for the family there.. that actually care.. My dad has always been a strong man, always able to do everything himself. Now it's as if he depends on me every step of the way now.. I absolutley do NOT mind being here for him after all he is my father he gave me life, now I am trying to make the rest of his the best possible. Everyone says to cherrish the time I have with him, the time I am spending with him. And I do.. I love every second of it... But the sad reality is, my dad is 72 years old and he is slowly giving up.. I have 2 older sistes and an older brother, and I get no help from them at all.. I can not cry in front of my sis, she laughs at me... my brother is too worried about his gf, and my other sister just seems to not care at all... I have no one to talk to about this,.. It is getting harder and harder every day, cause every day I know that maybe his tomorrow might not come.. I do everything for him every day that I can. I make the best day for him that I can.. I look to your story because Your husband has been living with it for 4 years now and thats amazing and I wish him all the best in the world... thank you for reading, and thank you for posting your story.. I hope all goes well.... keep me informed.. (if you have yahoo, or aol my screen name is SimplyCrazy4ya on both accounts..) 

 

 

On 9/15/2009 Florida Wife wrote:

I come to these message boards once in a while just to look up something in particular.  Tonight I started reading a series of postings related to the frustration that can be felt by family members when their loved ones are in denial.  It is true that cancer is a terminal disease and when my husband was diagnosed with Stage IV NSLC I immediately started to plan for his impending death.  I told myself that I needed to focus on him for now and that since he didn't have long to live I could make up time in my life later.  That was over four years ago.  I think my husband was lucky.  They did not discover the lymph node involvement until after they had removed one of his lungs.  They found cancer in the lymph nodes under his lung, not the ones they tested prior to taking out the lung.  I am a firm believer that removing the primary tumor has extended my husbands life.  However, he did get brain mets soon after he was diagnosed.  They gave him whole brain radiation and stereotactic radiation about three years ago.  At the time, I was expecting terrible side effects within a year.  They never really happened.  He isn't quite as sharp as he was before, but he is still able to function normally, drive, take care of his personal business, etc.  He has been through several rounds of chemo for various metastis around his body.  They shrink up for a while and then eventually come back.  He then gets switched to another medication.  This has been going on for over four years. 

The point I am trying to make is that treatment for lung cancer has gotten better in the last few years.  You cannot expect your loved one to die within a short period of time.  You may need to plan on them living with it for years.  That can be hard also.  As much as I love my husband, I feel like my life has been on hold for years now.  In retrospect, I should have continued focusing more on my career and other aspects of my life a little more than I did.  My husband always encouraged me to do so.  He has never been pessimistic at all.  He thanks God when he is well for making him well and he thanks God when things are bad for giving him the opportunity to earn more blessings in this life for his preparation for the next life. 

There is no way to tell.  I wish the best for you all.

 

Hello Caregiver,

I am new to this site, found it by accident, although after reading your post I no longer think it was an accident. Today my mother was diagnosed with NSLC. I'm still learning the details. We have a PET sch.. for next week and will find out how far it has spread. They think it stared in the lung and has now spread to the lymph nodes around her trac., possibly stage 111.  Your post gives me hope. Although, she does have a few things against her, mainly her age 72, and has 3 stints due to a heart attack 2 years ago, she is more or less in pretty good health. My main concern now is her treatment. We live in NW Ark. and have access to the Cancer Treatment Center in Tulsa. She has Medicare and a secondary ins. We have already contacted them but, the ins. will not cover everything. Therefore we will prob. be stuck with the treatment here in Ark. If you or anyone else has any words of wisdom to share I would be most grateful. I have no problem with taking care of her as long as it takes. She is all I have left. My younger brother is deceased and there are no other siblings. I do have a father, they have been divorced for over 40 years. He live in Fla. I do have half brothers, not from Mom. It's just me. I guess I'm not ready to let go. Anyway, thanks for letting me sound off. And thanks for the encourging news. I pray that you enjoy the remainder of time you have left with your husband. I know that I have learned that every day I have Mom with me is another day that God has blessed me.

God bless you and yours

Sherrie  

My husband is stage 4 colon cancer, spread to liver, but for colon cancer too there are many treatments these days and death will not be immediate. There are many things that can be done. It is not an immediate death sentence.

It is stressful as I am a kidney cancer patient in remission myself but I agree that each must have the best life they can and do all they can to have the best life and enjoy it. I think my husband will go before me but I have joined things and made as many friends as I so that I will always have that. I no longer work as I am 60 now. I help with the little grandchildren who live nearby as well so that is an important occupation for me.

It can all be managed quite well.

This a reply to the original message.

Helena.

 

 

 

On 9/15/2009 Florida Wife wrote:

I come to these message boards once in a while just to look up something in particular.  Tonight I started reading a series of postings related to the frustration that can be felt by family members when their loved ones are in denial.  It is true that cancer is a terminal disease and when my husband was diagnosed with Stage IV NSLC I immediately started to plan for his impending death.  I told myself that I needed to focus on him for now and that since he didn't have long to live I could make up time in my life later.  That was over four years ago.  I think my husband was lucky.  They did not discover the lymph node involvement until after they had removed one of his lungs.  They found cancer in the lymph nodes under his lung, not the ones they tested prior to taking out the lung.  I am a firm believer that removing the primary tumor has extended my husbands life.  However, he did get brain mets soon after he was diagnosed.  They gave him whole brain radiation and stereotactic radiation about three years ago.  At the time, I was expecting terrible side effects within a year.  They never really happened.  He isn't quite as sharp as he was before, but he is still able to function normally, drive, take care of his personal business, etc.  He has been through several rounds of chemo for various metastis around his body.  They shrink up for a while and then eventually come back.  He then gets switched to another medication.  This has been going on for over four years. 

The point I am trying to make is that treatment for lung cancer has gotten better in the last few years.  You cannot expect your loved one to die within a short period of time.  You may need to plan on them living with it for years.  That can be hard also.  As much as I love my husband, I feel like my life has been on hold for years now.  In retrospect, I should have continued focusing more on my career and other aspects of my life a little more than I did.  My husband always encouraged me to do so.  He has never been pessimistic at all.  He thanks God when he is well for making him well and he thanks God when things are bad for giving him the opportunity to earn more blessings in this life for his preparation for the next life. 

There is no way to tell.  I wish the best for you all.

 

 

Thank you for writing this message.   My husband has pancreatic cancer, stage four.  Although we thought that we had it beat (first diagnosis 2006) his cancer metastisized to his lungs in December of 2008.  Cancer is a long battle...if you read any obituary and if you have seen your loved one go through this then you can understand. There are many things that occur to the body during this process and everyones mental health is so incredibly important.  It seems as if life does get placed on hold and while there are many endearing moments this disease tend to tire out the caregiver and the patient.  And, as touched on before, planning for the death of a loved one is a necessary evil however, I do not know if there can be an emotional preperation.

In January we were told that it was overly optomistic that he would make it to June and we are still here together in September.  We do cherish the small moments, we do try to stay positive, we laugh, we cry, we modify our schedules or activities dependant on  his strength.  Life is a process just like cancer is...and to all of you out there I wish you only the best and that you will cherish every moment.  It is hard to focus on yourself, your career, your health as you do not know what is going to occur tomorrow. 

Today we are back in the hospital and I do not know if my husband will come home.  Even though my life has been on hold, I would not change anything.  Cancer has been my worst enemy and  has given me the greatest reward... a heightened sense of love, compassion and awareness.

 

 

 

On 9/15/2009 Florida Wife wrote:

I come to these message boards once in a while just to look up something in particular.  Tonight I started reading a series of postings related to the frustration that can be felt by family members when their loved ones are in denial.  It is true that cancer is a terminal disease and when my husband was diagnosed with Stage IV NSLC I immediately started to plan for his impending death.  I told myself that I needed to focus on him for now and that since he didn't have long to live I could make up time in my life later.  That was over four years ago.  I think my husband was lucky.  They did not discover the lymph node involvement until after they had removed one of his lungs.  They found cancer in the lymph nodes under his lung, not the ones they tested prior to taking out the lung.  I am a firm believer that removing the primary tumor has extended my husbands life.  However, he did get brain mets soon after he was diagnosed.  They gave him whole brain radiation and stereotactic radiation about three years ago.  At the time, I was expecting terrible side effects within a year.  They never really happened.  He isn't quite as sharp as he was before, but he is still able to function normally, drive, take care of his personal business, etc.  He has been through several rounds of chemo for various metastis around his body.  They shrink up for a while and then eventually come back.  He then gets switched to another medication.  This has been going on for over four years. 

The point I am trying to make is that treatment for lung cancer has gotten better in the last few years.  You cannot expect your loved one to die within a short period of time.  You may need to plan on them living with it for years.  That can be hard also.  As much as I love my husband, I feel like my life has been on hold for years now.  In retrospect, I should have continued focusing more on my career and other aspects of my life a little more than I did.  My husband always encouraged me to do so.  He has never been pessimistic at all.  He thanks God when he is well for making him well and he thanks God when things are bad for giving him the opportunity to earn more blessings in this life for his preparation for the next life. 

There is no way to tell.  I wish the best for you all.

 

 

I'm very happy to hear of the outcome to date for your husband and that you are realizing you need to continue to take care of yourself as well.  Lung cancer that is operable and then further treated is the best possible outlook.  Lung cancer statistics online are very scary and as you are experiencing, misleading.  You can never give up hope (and some days it feels like that is all there is).  I do hope that you have the support of family and friends near by you.  You need the emotional support as much as your spouse needs the physical help. 

I was dx with NSCLC Stage IV a year ago, but it is not operable as it is scattered in small pockets throughout both lungs.  While devastating as the news was, I can't believe how great the past year has been.  I am very fortunate to be on the drug Tarceva (oral chemo) and the side effects have been manageable.  My spouse is supportive, but I want him to continue to live his life in the same manner we have prior to the dx.  I am only 45 and together we have a young daughter, age 11.  If I ever need motivation to stay healthy and remain positive, it is my inspiration to think of her. 

I refused to let the dr give me a time stamp on my life.  In a way, it is very freeing to have a cancer dx as you then put some perspective on things - that the little things don't have the same weight and worry they did before.  How exhausting it is to worry over practically nothing, when there are much bigger issues going on.

Wishing your spouse the very best in the coming years and for you as well.  Stay well.

Ann

 

On 9/15/2009 Florida Wife wrote:

I come to these message boards once in a while just to look up something in particular.  Tonight I started reading a series of postings related to the frustration that can be felt by family members when their loved ones are in denial.  It is true that cancer is a terminal disease and when my husband was diagnosed with Stage IV NSLC I immediately started to plan for his impending death.  I told myself that I needed to focus on him for now and that since he didn't have long to live I could make up time in my life later.  That was over four years ago.  I think my husband was lucky.  They did not discover the lymph node involvement until after they had removed one of his lungs.  They found cancer in the lymph nodes under his lung, not the ones they tested prior to taking out the lung.  I am a firm believer that removing the primary tumor has extended my husbands life.  However, he did get brain mets soon after he was diagnosed.  They gave him whole brain radiation and stereotactic radiation about three years ago.  At the time, I was expecting terrible side effects within a year.  They never really happened.  He isn't quite as sharp as he was before, but he is still able to function normally, drive, take care of his personal business, etc.  He has been through several rounds of chemo for various metastis around his body.  They shrink up for a while and then eventually come back.  He then gets switched to another medication.  This has been going on for over four years. 

The point I am trying to make is that treatment for lung cancer has gotten better in the last few years.  You cannot expect your loved one to die within a short period of time.  You may need to plan on them living with it for years.  That can be hard also.  As much as I love my husband, I feel like my life has been on hold for years now.  In retrospect, I should have continued focusing more on my career and other aspects of my life a little more than I did.  My husband always encouraged me to do so.  He has never been pessimistic at all.  He thanks God when he is well for making him well and he thanks God when things are bad for giving him the opportunity to earn more blessings in this life for his preparation for the next life. 

There is no way to tell.  I wish the best for you all.

 

Thanks for posting the story about your husband, i hope he continues to do well and he sounds like a very wonderful man and seems to be thankful for everything . My mother had cancer when I was 14 yrs old and my father HAD to continue working or we would have all gone down the drain. They would not let him take a leave, this was back in 1977. Although 8 hrs a day he spent working but everyminute of the rest of the day he spent caring for her, crying alot and constantly worried about her, we all pitched in with no regrets, this was my mother and my dads wife. Nobody thought twice about anything else.  I guess as I was reading your post, you mentioned that in retrospect, in the last 4 years you feel somewhat regretful that you did not focus more on your career and your life has been on hold, although you do love your husband.  That stuck me very hard and I was very very sad to read that. There is absolutely NOTHING more important during these times of a loved one struck with cancer.  How is someone focusing on their career compare to living with cancer for the one who has it and all the sad emotions he has anyway that people have to alter thier lives for him and all the guilt that goes along with that (your husband).  You did the right thing by dropping everything to take care of him and everything he needs, but to feel regretful for not focusing on your own life and your career makes me feel so sad to have read that.  That makes me wonder if you feel resentful for doing what you did.  All you have to think is if you were the one living with the cancer and your husband was caring for you, how would you feel while he was caring for you, in the back of his mind he is thinking about not being focused on his career and everything that HE is loosing and what HE is missing as HIS life is just going by and he becomes regretful about himself and his life........Would you feel hurt by that ?  When people do things for one another it should not be out of duty, but because they have the deep understanding that their loved one WILL NEVER suffer alone. It is a completly SELFLESS time in a persons life..

My husband was diagnosed with nsclc in June of 05.  He was sick for nearly a year and a half before the diagnosis and lived 9 months after.  I quit my job and spent every waking moment with him.  I knew he needed me and I wanted to be with him.  I do remember one occasion where his friend came and stayed with him and I went out to lunch with a few close friends.  I was afraid to go and leave him alone but I had a lovely afternoon and was refreshed when I got home.  I am so happy I quit my job and spent that time with him.  We were able to talk and cry and sometimes llaugh.  I miss him terribly but I'll never have to feel any guilt.  I know I did everything humanly possible for him.  You will fee the same way too when and if he does pass away.  God bless you.

Thank you for sharing this encouraging story.   For those of us who have been diagnosed with cancer, this is what we need to hear.   I was diagnosed with lung cancer in Jan. '09.   I am on Tarceva and despite some of the side effects, things are going well.   I feel better than I did a year ago.  Praise God!  I completely believe in a positive attitude, an attitude of hope, and a belief in God has been vital to me continuing my life with the blessing of feeling good despite cancer.  I do the same things every day I used to do.   There is always hope in Jesus!  I don't know how people get through something like this without Him.  Folks, we just can't give up the fight!  Keep your chin up, keep (or get) a positive attitude and walk by faith, trusting in Him.   Treasure every single day.   If you wake up and you still have breath in your body, HE is not finished with you!  That's my motto!  I've got to press on for myself and for my family.      I have 3 children, ages 19, 15, and 12 and a husband of almost 24 years.   They NEED me!   Fight the sad feelings, treasure today as it is a gift, and love on your family!

 Blessings,

 Molly

Your sister actually laughs at you when you get upset? How insensitive! Yikes, I feel for you. Though it's hard, you won't regret being there for your dad. My dad was diagnosed with Stage IV NSLC last June. We don't live in the same state and when I got back home after the first visit, I sort of became paralyzed with fear of the situation. I didn't call him as much as I should have because I thought I had time. I had planned to visit him and bring my son the end of last September. I never got that opportunity because he passed away August 29th. It's been a year and I still have regrets for not being there more for him. I was scared and it was easier to procrastinate that phone call. I wonder if that's what your siblings are doing.