Life expectancy of Stage IV NSCLC

andre · New User Joined: 25 Mar 2006 Posts: 3

The situation has been difficult. I am in and out as he is. Dealing with the family is hard, they like to lock me out as a partner, not a member. Today I cleaned, did laundry, put my taxes together, at my own home. Still I feel guilty for not being there.
I hate this.

catherine · New User Joined: 07 Mar 2006 Posts: 9

I also feel that I have to be available at all times and get very little time off, except when he's resting. But then I feel like I shouldn't complain since I'm not the one who is sick and having these dreadful treatments. He's halfway done with radiation and facing chemo. I still am looking for some kind of idea about his prognosis, since it's very hard for us to plan things. I think he could stand to hear the truth but I hate to have to be the one to tell him which questions to ask the doctor. At the same time I think he's fooling himself saying maybe he'll beat this thing (Stage IV metasasized to his brain, multiple lung tumors) and want him to know the reality so he can make plans, say goodbye, figure out what to do with belongings etc. The not knowing is making me crazy and is a weird kind of deception - I feel like I know an important secret about him that he doesn't know. If anyone has ideas or places to look for information I'd love to hear it. Thanks.

katharine · New User Joined: 23 Mar 2006 Posts: 3 Location: oregon

My father-in-law passed away March 30th, a week after I initially posted. On March 27th we had a good visit, talked about family, friends, his desire for death with dignity (he was in the 10 day waiting period). He ate an egg salad sandwich. Hospice had started coming in 2 days prior. The next day he could barely stand being transferred to the bedside commode. He was in a great deal of chest pain so they increased the morphine. It was all downhill from there. The hospice nurse could hardly get an oxygen reading from the fingertip test. His last words, the day before he died, were "Now I'm just a number". I believe that he was diagnosed at such a late stage because he was very fit and physically active, he had endurance and strength, hadn't been sick before, and he viewed his fatigue and shortness of breath as just "aging" rather than symptoms of a disease. For his sake, I'm glad he went quickly instead of suffering, but we are all still in shock because the initial diagnosis was for 3 to 9 months. Thanks for all the replies, I appreciate the support and my prayers will be for all of you who've lost someone as well.

adr22367 · Experienced user Joined: 17 May 2005 Posts: 78

I'm so sorry katharine. My Dad passed March 29th after 20 months having lung cancer. He wasn't even on morphine yet, just percocet, but they couldn't get an oxygen reading from him the week before. We had his oxygen on 5 and he was very uncomfortable the night before, not in great pain though. When he was first diagnosed the doctor said possibly 9 months, but with all the different chemos he was on he lasted 20.

katharine · New User Joined: 23 Mar 2006 Posts: 3 Location: oregon

I too am sorry about your Dad. I talked to my husband a little today about his Dad's last day, and he said that the manner of death was very upsetting to his sister, who was with his Dad almost the whole last day. Apparently there was a lot of gagging, and some vomiting of blood while he was pretty much comatose. It was not just a slow, quiet, slipping away. And now she has nightmares about those hours. My husband said hospice is allowed to just turn off the oxygen when the person is at the end and on heavy morphine, that the administration of the oxygen is considered intervention at that point & if the person requests no intervention it's ok to do it. I wasn't there but I wonder if they could have avoided what happened. At least he was in his own bed, instead of the hospital. My own father died 7 years ago from cancer of the esophagus, he died at home, never did have morphine, also just percocet, but since it wasn't his lungs there wasn't the gasping or more physical reactions as his body shut down. Hope anyone who reads this will ask their doctor about what to expect near the end rather than be so traumatized, like my sister-in-law was.

adr22367 · Experienced user Joined: 17 May 2005 Posts: 78

Hospice is allowed, but my Mom signed a paper stating they couldn't for my Dad. She would never leave them alone with him just in case.

RK in NC · New User Joined: 20 Mar 2006 Posts: 3

I recently wrote that my Father-in-Law was diagnosed with Stage 4 Lung cancer and there was nothing that could be done to the late stage. I had wondered how someone could seem healthy except for severe pain in his hip ( Had been going to the doctor for a fall that he had over a year ago that seemed to bring on the pain) could only have a few months. It has now been one month and I can see the difference. He has went from taking Loratab? to take some medicine with morphine. He cannot sleep through the night due to the pain but during the day he will never complain. We just don't know what to expect. We have been going in every weekend so that my husband can spend quality time with his dad. We are going to put the boat on the lake this weekend so that they could enjoy some fishing before his health deteriotes that he cannot enjoy the lake. I am just not certain how much longer since he has started taking the morphine. He refused to let hospice go ahead and come in to get information and set everything up. Sometimes you wonder if this is because he thinks he can fight it or if it is because he refuses to accept the outcome. He refuses to talk to anyone about it.

Thanks for listening. I am trying to be prepared in order to be there for my husband. This seems like a nightmare that I can't wake up from.

Kim

andre · New User Joined: 25 Mar 2006 Posts: 3

My partner of nine years, Neal, passed away on April 10 from stage IV NSCLC that had spread like wildfire. He was admitted into hospital after a sudden seizure on February 4 and it all happened so fast I am still in shock. He was in hospice at his family home when he went. I arrived about 20 minutes too late, he was gone. This has become even more of a nightmare as his family had started to turn against me once I had arranged for his hospice care. The service and funeral (Holy Thursday and Good Friday) were simple and lovely but difficult with tempers erupting at various times. Neal had wanted me to have some of his belongings (just clothes that would not fit anyone else and were of sentimental value). When I took some of them with me back to my own home I was accused of stealing. As Neal did not leave a will or any specific instructions and we are not legal domestic partners I have little if any rights in the situation. He had several lesions on his brain and was not very lucid most of the time. To add further distress I found obvious evidence in his apartment (which was part of the family home) that he had been cheating on me with a multitude of people. I have been through a gamut of emotions during this process and at times feel on the verge of a complete breakdown. I still love him and miss him so much yet my anger at the betrayal (and the family drama) and my inabilty to discuss it with him have left little closure. Also, no one knows for sure if he was aware he had terminal cancer and never told anyone. I am still haunted by various images of his pain and suffering as he declined as if they are burned in my brain. Oh well, at least we got to see Paris (his lifelong dream) in October of last year, when he was still well enough to enjoy it.

nomorepain

[quote="rsv"]My mother-in-law was diagnosed on August 15, 2005 with stage 3B or stage 4 NSCLC (never really got a clear answer from the doctor). She died October 27, 2005. From time of diagnosis to death only 9 weeks and 3 days.
It was much more aggressive than they led us to believe.[/quote]

Wow, that timeline is almost spot-on with my father. He was diagnosed August 19, 2005. He was given 3-6 months w/o treatment, maybe 1-2 more months w/treatment. He passed away on Oct.18, 2005, not quite 2 months later.

nomorepain

[quote="katharine"]I too am sorry about your Dad. I talked to my husband a little today about his Dad's last day, and he said that the manner of death was very upsetting to his sister, who was with his Dad almost the whole last day. Apparently there was a lot of gagging, and some vomiting of blood while he was pretty much comatose. It was not just a slow, quiet, slipping away. And now she has nightmares about those hours. My husband said hospice is allowed to just turn off the oxygen when the person is at the end and on heavy morphine, that the administration of the oxygen is considered intervention at that point & if the person requests no intervention it's ok to do it. I wasn't there but I wonder if they could have avoided what happened. At least he was in his own bed, instead of the hospital. My own father died 7 years ago from cancer of the esophagus, he died at home, never did have morphine, also just percocet, but since it wasn't his lungs there wasn't the gasping or more physical reactions as his body shut down. Hope anyone who reads this will ask their doctor about what to expect near the end rather than be so traumatized, like my sister-in-law was.[/quote]

KAtherine, I feel for you and your family. I was there when my Dad went, and I still have mixed feelings. At least in his case, there was no dignity in death. He went from awake & alert to comatose so quickly. I'm just glad his pain is gone. I hope your sister-in-law is doing better.

Crystal1111 · Regular Joined: 18 Jul 2005 Posts: 27 Location: Florida

My mother was diagnosed March 24, 2006 and had a metastatic brain tumor removed. The primary NSCLC tumor is quite small. She is going to start chemotherapy in a couple of weeks. The doctor was reluctant to call it stage 4 because the primary tumor is so small, but I guess he had to because it had spread to the brain and possibly the liver. It's so strange because my mother couldn't look healthier. She had absolutely no symptoms until the headaches came 2 months ago. The only symptoms she has had are from the brain metastasis, not the lung tumor. I'm just a mixture of emotions right now as you all know. This forum is so helpful.

Crystal
Daughter of Sue, age 50
diagnosed with Stage IV NSCLC
Starts chemo in 2 weeks.

Faith Teresa · New User Joined: 21 Apr 2006 Posts: 1

I just found this site. I wish I had it a month ago. My Dad was diagnosed on March 8 this year with Stage 4 Lung Cancer. He was told he would receive chemo. First he had his left lung drained from fluid. Then he started having bowel obstructions. The Drs thought it was the cancer. My Dad insisted on surgery. It was appendicitis!!! They removed the rupture and cleaned him up. In the meantime his lung refilled with fluid. He never received any chemo or medication to treat the cancer as he was too weak. He was in ICU recovering from the appendectomy when he died. He died on the 25th, about 2.5 weeks after his diagnosis. He was in the hospital for 18 days. The day before he died he was up, awake in bed talking to us at 9:45pm. The next morning we came in and he was unable to breathe so they had to intubate him. We were with him for 5 hours and were able to sit, hold his hand and talk to him while he died. It was a very beautiful death. He began the Lord's prayer and we all said it with him. At one point he told us all to be quiet! He was listening intently to someone that no one else could hear! He started moving his mouth without saying anything like he was praying. Afterwards he came back to, and we stayed with him 4 more hours before he died. We believe Christ came to get him. I help his hand until he took his last breath. It was not horrible. He only quickly started to slow in his breathing until he took no more breaths. My Dad waited until the last to go to the doctor with his cancer. At first I was angry, but I believe it was the best way for him to go. He never suffered from chemo or pain from the cancer. We had 2.5 weeks with him in the hospital to talk and settle things. I could not have wished for a better way to watch something so painful happen.

Rmhorne2 · Posted: Sat Apr 22, 2006 7:44 am Post subject: 6 weeks from dx to death

My mom died yesterday (4-21-06) six weeks to the day after being dx with stage iv nsclc with mets to the brain, spine, and ribs. She received two weeks of whole brain radiation but no chemo. Her death was quite and she did not have to suffer long. The speed of her decline was almost unbeleivable to me.

Rmhorne2 Crying or Very sad

SAMBRIONY · New User Joined: 22 Apr 2006 Posts: 3

My dad was diagnosed with nsclc on the 23rd of Dec last year.A devastating blow for our family.When you hear the word lung cancer you always assume the worst.To complicate things he had two heart attacks in the following two weeks which of course impacted on the care and treatment he was able to receive.Yesterday eight weeks after receiving three stents in his right heart artery,he had had a lobectomny of the two lobes in the right lung.The risks were siginificant and there was no guarantees he would get through it.Today he is sitting up and whilst I know we have a long journey ahead of us he is alive.The world of medicine and the skills of out doctors and nurse are developing every day so please stay postive...attitude,no matter what the progonosis plays a huge part in the patients well being.Now instead of being 67 and thinking he was not going to see 68 my dad is more positive about life.
I know we are one of the luckier families around but some day i am sure they will find a cure for this dreadful disease.
My mother in law was less lucky four years ago with bowel cancer which was diagnosed at stage 4 with secondary metasis lin the liver and lungs.please take advantage of the support that is available.The Macmillian nurses are fantastic and not only there for the patients but the families as well.My mother in law had a very difficult death.Remember as the family you know what is best.Whilst it is sometimes hard to let go..the decision must be best for the patient.She decided to take treatment which prolonged her life for around a year.On reflection we are not sure it was right for her...for us yes.
I will be thinking about the many of you who are suffreing like us.It is beyond describing what we all go through but there is a strength comes from somehwere.
Good luck to all and your families.

RK in NC · New User Joined: 20 Mar 2006 Posts: 3

Things are about the same as they were in April when I last posted. My father-in-law seems weak but is still able to get around fairly well with a walker. He was using a cane. The noticable difference is he sleeps more and he is vomiting about everyday. I believe this if from the medicine he takes for the pain. It started around the time he started taking the oxicoton?. Does this medicine usually make you sick or is the cancer making him sick? He takes medicine for the vomitting but it doesn't seem to help.

No one seems to really know how he is feeling because he will not complain even about the pain. He keeps a heating pad on his leg and is constantly rubbing his leg. Sometimes he will states it hurts. When I asked today how he feels, he states that his leg was the only thing bothering him and he may stop taking the meds because they make him sick. He still has alot of fight left.

The lung mass was 9cm x 4 cm. Since they did not do a biopsy what are the chances that they could be wrong about the cancer? His medical info just say that it is consistant with lung cancer.

Any information would be great. He refused a second opinion. He also will only let hospice come in one day a week and then tells them he is fine and has no pain.

Thanks for the info.

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