Roller Coaster ride with stage IV NSCLC

My Dad was diagnosed in July 2008 with a 6 cm mass in his left lung. Attempted surgical removal became unavailable as an option only after opening him up. Limited Radiation (12 treatments) no chemotherapy, Dad is into quality of life and chose not to do chemo. He is already a 2x cancer survivor of 2 rounds of malignant melanoma (Lung is unrelated) - he was given 6 months to live at age 47 and here he is at age 69 with Lung Cancer.

He has lost 56 pounds in the year since the diagnosis (now 150 at 6 ft tall). He wears 50 mg fentynal patch for pain, but experiences little breakthrough pain other than infrequent stabbing sensation in armpit and back. He is currently only treating additional pain as necessary with morphine IR and Zanax combo.

The confusion for me as his only child and caregiver is that he is so up and down it makes my head spin. One day he seems disoriented and somewhat nonsensical, the next he is reading the newspaper and discussing tax law changes. I know I should be happy for the good days, but it is also so difficult to navigate through daily life with such uncertainty. He has hospice care come in twice a week to check all his vitals, etc. He was a 50 year smoker yet maintains Pulse/Ox levels no lower than 95 on a bad day? How is this even possible while his entire left lung is riddled with disease? Has anyone seen or heard of a case such as his?

Unlike many of the post, he is on no treatment regimen whatsoever.  At this point he is mostly in bed unless he gets up to eat twice a day and possibly a bit longer for some conversation. Since I am trying to balance a job, two young children and his care, I have a very hard time living with so many unknowns. I am prepared to move into his home when the time comes, but when is that time? I have been told that once you move in you can pretty much assume you will not sleep much, but how can I do this if the timing could be many months or even more.

I am simply full of confusion and mixed thoughts.  I do not know if he has any or where the mets would be since we no longer visit the doctor or undergo any scans/tests.

Any Ideas or words of wisdom???

On 8/10/2009 JerzyNola wrote:

My Dad was diagnosed in July 2008 with a 6 cm mass in his left lung. Attempted surgical removal became unavailable as an option only after opening him up. Limited Radiation (12 treatments) no chemotherapy, Dad is into quality of life and chose not to do chemo. He is already a 2x cancer survivor of 2 rounds of malignant melanoma (Lung is unrelated) - he was given 6 months to live at age 47 and here he is at age 69 with Lung Cancer.

He has lost 56 pounds in the year since the diagnosis (now 150 at 6 ft tall). He wears 50 mg fentynal patch for pain, but experiences little breakthrough pain other than infrequent stabbing sensation in armpit and back. He is currently only treating additional pain as necessary with morphine IR and Zanax combo.

The confusion for me as his only child and caregiver is that he is so up and down it makes my head spin. One day he seems disoriented and somewhat nonsensical, the next he is reading the newspaper and discussing tax law changes. I know I should be happy for the good days, but it is also so difficult to navigate through daily life with such uncertainty. He has hospice care come in twice a week to check all his vitals, etc. He was a 50 year smoker yet maintains Pulse/Ox levels no lower than 95 on a bad day? How is this even possible while his entire left lung is riddled with disease? Has anyone seen or heard of a case such as his?

Unlike many of the post, he is on no treatment regimen whatsoever.  At this point he is mostly in bed unless he gets up to eat twice a day and possibly a bit longer for some conversation. Since I am trying to balance a job, two young children and his care, I have a very hard time living with so many unknowns. I am prepared to move into his home when the time comes, but when is that time? I have been told that once you move in you can pretty much assume you will not sleep much, but how can I do this if the timing could be many months or even more.

I am simply full of confusion and mixed thoughts.  I do not know if he has any or where the mets would be since we no longer visit the doctor or undergo any scans/tests.

Any Ideas or words of wisdom???

I would think Hospice could give much counsel.    Glad your dad is getting the quality of life he wants.    You need that counsel from somewhere for your peace of mind.

As a care giver I agree it is a Roller Coaster ride.  My husband is 43 with stage iv lung cancer and it is very frustrating.  Wondering when the other shoe is going to fall. 

I read a book recently called Final Gift it was written by hospice nursers it has helped me to understand things and to be better prepared (if that is possible).  The days you think your father is confused he may not be he may be in his only way trying to communicate death to you.  Final Gift helps you understand so your not so confused, scared or/and frustrated because you don't understand. 

I know it's hard but try not to think about how hard things are going to get.  Try to focus on today and just get through each day at a time. You won't feel so tired.  One thing I believe is very important and has helped me is that you have to make time for yourself.  Whether it's a long bubble bath or going out with friends for a little while.  You have to take time for yourself otherwise you will get burned out quit.

I pray that God gives you and your father the strength to get through this difficult time.

kzfamily 

I am a cancer patient at stage 4 and wanted to share I am so sorry what you are going through!! But also wanted to say thank you for posting this as I have the same problem with good and bad days and thought I was going crazy and it torments me at what I am putting those around me through!!. I am 47 a single dad of 4, my 2 youngest 11 and 10yo are special needs.. It breaks my heart to have always been 'the rock' and reduced to this!!..... If anyone out there has any insight ao can help in this area, please help the original poster of this topic and also I would like to know what I can do to be in a better place for my kids!! Blessings, Brian

Me too,  stage IV NSCLC and it is going to be now one year two month and I am 45 .

Thks God for his mercy and healing . And grateful to hv wisdom from him to guide me how to go thro' life living with lung cancer.

I wish my experience will be helpful for all of you .

1) As cancer patient, sometime , we need to have quite time . So, I hv an understanding with my wife that if there's a day or moment when i suddenly be very quite and want to be alone or quite time. Pls do not be worry or feel the I am angry ; depress or you did something wrong.

I feel that this is a very important point for both patient and care taker  to know.

Reason that we need quite time .

- When out of sudden, we feel some kind of pain or uneasy , but, we are not sure is it the cause of cancer grow or it is just because we are too sensitive to our body changes. ( many time, it is because of we are too sensitive of our body changes ) . This is the time we need quite time to get ourself calm down and not to think too much or worry , but, try to relax and monitor the situation with observation.

- When we out of sudden feel kind of missing the normal life that we are living ; think of leaving the family ; friends . We may need some quite time to get ourself to rebuild our spirit and think some good happy moment that we have in the past ; or to start thinking of how fortunate are we in comparing with many many more people .

And many more reason ....

2) As cancer patient, we need to understand that we need to give the similar support to our care taker, especially our wife and children .

Sometime, the care taker can have more depression than the cancer patient. So, we need also to plan for proper time to discuss chat with them and let them know how we feel ; how much we love them and how to live happily together during our treatment and walk joyfully to the end of our day .

For my children, we have explain to her my condition ( she is 8 ) and we also hv highlight to her teacher, so that , in case she is not receive well with my condition, teacher will inform us .  Praise The Lord for his grace, she is doing well .

3) As care taker, I feel that we shud understand how the patient feel and shud not too insist the patient to accept your opinion . As , during the treatment , the patient know better than anyone else about the side effect or the body condition. So, be a good listener and give suggestion or idea to the patient , instead of telling the patient what to do .

4) As care taker , we shud be strong and not to panic with sudden changes of patient condition. Therefore, care taker shud know the side effect of all type of drugs that the patient taking , this will be a good help to monitor the condition of the patient and not fall into panic situation.

Hv faith in God , seek his wisdom , seek his healing and keep ourself happy for each day we live .

I hv went thro' 6 cycles of chemo last year ( carboplatin + Taxol ) , follow by Tarceva for 2 1/2 months , then, I rest for 1 1/2 months without treatment ( so that I can have holiday with my family ) < note : before doing so, I chk my lung fuction ; my heart function and discuss with my oncologist and the chest specialist ) , 1st April, I start chemo treatment again with cisplatin + alimta , suppose to be 6 cycles. I stop it after 3 cycles, as the side effect is strong and no quality of life . Meantime, CT scan shown there is not much of effect of the drug to my condition.

Since last year chemo treatment until my last chemo in mid May '09, there is no major changes to the size of tumor and my condition . Hv visited more that 10 oncologist to get opinion, the conclusion is that I shud be having the so call stable condition . But, no one can tell me why the first chemo ; second chemo and tarceva have no effect to reduce the tumor . But, thks God's grace , the tumor is not giving me much problem.

I am now taking some supplement and vege/fruit juice every day + brisk walking one hour in the morning and one hour in the evening + be positive and enjoy my day with my family . Basically, I want to ensure my immune system and body system be re-builded , so that I am ready for any further chemo treatment, if needed . ( Note : cancer patient need to be strong and fit to go thro' chemo treatment.  )

I plan to take my blood test and CT scan by end of this month to check my condition and decide the next treatment .

Thks and sincerely wish my sharing will assist you .

SK

On 8/10/2009 JerzyNola wrote:

My Dad was diagnosed in July 2008 with a 6 cm mass in his left lung. Attempted surgical removal became unavailable as an option only after opening him up. Limited Radiation (12 treatments) no chemotherapy, Dad is into quality of life and chose not to do chemo. He is already a 2x cancer survivor of 2 rounds of malignant melanoma (Lung is unrelated) - he was given 6 months to live at age 47 and here he is at age 69 with Lung Cancer.

He has lost 56 pounds in the year since the diagnosis (now 150 at 6 ft tall). He wears 50 mg fentynal patch for pain, but experiences little breakthrough pain other than infrequent stabbing sensation in armpit and back. He is currently only treating additional pain as necessary with morphine IR and Zanax combo.

The confusion for me as his only child and caregiver is that he is so up and down it makes my head spin. One day he seems disoriented and somewhat nonsensical, the next he is reading the newspaper and discussing tax law changes. I know I should be happy for the good days, but it is also so difficult to navigate through daily life with such uncertainty. He has hospice care come in twice a week to check all his vitals, etc. He was a 50 year smoker yet maintains Pulse/Ox levels no lower than 95 on a bad day? How is this even possible while his entire left lung is riddled with disease? Has anyone seen or heard of a case such as his?

Unlike many of the post, he is on no treatment regimen whatsoever.  At this point he is mostly in bed unless he gets up to eat twice a day and possibly a bit longer for some conversation. Since I am trying to balance a job, two young children and his care, I have a very hard time living with so many unknowns. I am prepared to move into his home when the time comes, but when is that time? I have been told that once you move in you can pretty much assume you will not sleep much, but how can I do this if the timing could be many months or even more.

I am simply full of confusion and mixed thoughts.  I do not know if he has any or where the mets would be since we no longer visit the doctor or undergo any scans/tests.

Any Ideas or words of wisdom???

First of all let me just say you are a stronge woman to have to take on all this and raise a family and keep a job all by yourself. Second I would like to say how wonderful it is your dad has surpassed the one yr milestone. You said he is stage IV... my mom, who just turned 50 six mnths ago has stage IV with metastasis to femer,pelvis,adrenal gland,and brain symptoms started in Nov 08. She was Dx in May. It is an up and down roller coaster for sure. And I can imagine you are pretty burnt out at the end of the day. You will have peace in knowing that you really where there for your dad and did everything you could when that day comes. My mom has a 7cm mass in upper right lobe, yet oxygen has been at 97% so far. I am with you in the struggle of not knowing what comes next and when. You say your dad has hospice a couple times a week? I wonder if they are aware of his mood/mental flucuations? I only ask because when my mom started acting a bit unusuall in July off and on, talking in semi-concosnous state, twitching ect, Her doc't put her on Decadron, which helped immediatly, because the strange behavior was caused by brain mets. She had radiation, however she has never had chemo.She has palliative care coming a few times a mnth, but still goes for scans and deals with the Doc's and Onoc. No one knows when or what the journey might bring but you keep doing your best and your dad knows you are there for him too. I have taken compassionate care leave from work, which has helped. It sounds like your dad is a fighter! I will keep him in my thoughts and prayers.

Wow - I was so pleased at everyone's input.  I thought that no one had responded to my post because my e-mail never alerted me.

Thanks for all the differing perspectives. I continue to be baffled by the progress of this strange experience. Last week I was almost ready to move my children in with me at Dad's, this week he is talking about being around through Christmas.

What I need to convey to Dad is that I cannot keep up the current pace that I am setting for a long-term on my own. I need some help. I don't want to hurt his feelings, but I have alot to do and can't keep juggling this way.

From the patients perspective, I'd love some insight...

Here's how the days have gone lately:

Dad mostly sleeps or doses on and off until about 10:30 a.m. I try to get there around that time and make him tea and perhaps a muffin. Most days he will come out of bed to the living room to eat and chat a bit, sometimes glance at the newspaper. Then he has to lay down again due to general discomfort, not really pain. He will watch TV and dose on and off most of the day. I may work there and come talk to him on and off until about 3:00 p.m. when I dismiss myself to run to get my kids from school. Then I am back again at some point to make him some dinner and chat some more until he gets comfortable in bed again. When he seems to have settled in I go home  and then back again the next mid morning after carpool line and a few hours at the office.

it's more the emotional up and down that gets to me than the actual spending time there. I want to let my Dad know that this is taking a tol on me too, but without hurting his feelings....

Hi JrzyNola,

My brother-in-law was just diagnosed last week with stage 4 lung cancer. He is 40 years old, and they have just found it in his liver as well, so I came to this site for some hope. I wanted to tell you that some of your dad's changes in behavior may be due to his pain/anti-depressant medication. My husband was on heavy pain meds after a back surgery and he was all over the place like that mentally/emotionally/physically. I felt like I was living with a stranger. Obviously, it may not be that, and it may be cancer related, but I just wanted to give you that insight. Take care! I'll be praying for you!

Thank you so much for posting this. It really helps! I am a caregiver to my mother who is 51 with Stage 3b NSCLC and she goes through this. There are days when she does get sad and I worry and never know what to do because then I get depressed seeing her like this. So this really helps to know what she night be going through and to know just to let her be for a bit so that she can gather her thoughts.God Bless each and everyone of you reading this.

Thanks again,

Missy