Non Small Cell Lung Cancer Average Length of Life Expectancy and Growth Speed

[tompkin44]

My dad was diagnosed with NSCLC stage Iv and died one month later.  What is the average rate for which this cancer grows?  For example, did he probable get it about one month, six months or one year prior?
Thank You

[tompkin44]

OK - the Hospice near me has a few "Hospice Houses" which are very nice, check that out.  Also, importantly, look at your moms insurance, my dads covered up to 6 months of hospice as long as he was labeled "terminal" which sadly enough they are with Stage IV.  Now, if there is not a hospice house, alot of rehab/nursing homes can accept patients through the hospice benefit.  My doctors recommended this route beacuse they will only need more care.  It is better for you to be there refreshed than cranky from being up most of the night.  If that avenue does not work, check you moms insurance for nursing care, my dad's was 90 days which did not seem like alot but was actually much longer than needed.  Is your mom sitting or walking?  I found one really honest oncologist that told me that the more dormant they are the quicker the disease progresses.  My dad had morphine because of pain in his back, his primary care doctor told him he would pass away in his sleep and he did painlessly.  Hope this is helpful.  If you have any more questions I will keep checking the board.  Debbie

[hm05]

Hi Debbie-That is great info.  I met with the Hospice director at the hospital today.  They can only do up to 8 hrs. at the house...per day, and the only way we can get round the clock care is to hire private nurses.  I will tell you she is not the "active" kind, she can barely stand, and actually she tried to get up in the night and fell!!  I was so upset about this, and filed a complaint with the nurse manager at the hosp.  It is bad enough to have your parent dying , but to find out they fell, because they didn't want to bother the nurse, make me angry.  They have spoken about morphine, and she will be getting this once she comes home, for back pain, of which she is getting more and more, in the lung that has new activity.  We do not even know if it has gone elsewhere in her body, but they imagine it has.  I mean to look at her she looks ok, but I know her insides are being ravaged, it is sad, because she is kind of now in a lock down, with an alarm on the bed, that will sound if she tries to struggle to get up.  The demerol was causing hallucinations, and I think she even forgot she had her chest tube in, because when she fell, part of it slipped out, the surgeon had to come in and stitch it up!  I tell you, sometimes I do not know what is worse her dying or her living in hell, with tubes and wires and pain. I think you know what I mean.
They mentioned putting her in a nursing home, but I feel that is cruel, and like throwing someone away.  I don't know, I just know I can not go thru this alone-thanks for your concern and help.

[tompkin44]

OK, listen, there are alot of good nursing homes, there are also "Nursing/rehab facilities".  If you know of a nurse, ask them if have any inside info on the best place for your mom.  

I know it sounds mean sending your mom to a nursing home, but, she will get round the clock care, they will give her all the medicine/pain killers, it SHOULD be covered under her insurance, they will allow hospice, and you will be able to rest at night and will therefore be better equipped to be with your mom during the day. If you take a step back and look at the situation, can you see how this might be better for your mom?  You can get the names of a few recommended and go visit or have a family member do that for you.  I did this and watched for how long it took an attendent to go to a patiesnt's room after their help light went on.

One more think, does Hospice not have a facility which you can put your mom in?  They are usually great facilities.

Do you have family around where you can each go for four hour shifts and cover the day that way?
Again, hope this helps, Debbie

[hm05]

Ok.  Yes, we have gotten things "as best as we can" squared away for my mother's care, when released from the Hospital, she will come home.  We received a bed and oxygen from Hospice, and they will be finding an aid for the daytime, for approx. four hours a day-and if they can not find a 4 hr. aid then we will do 8 hr. Then, at night, we hired a "family care giver" this is for 12 hrs. from 8-8...that way someone should always be around.  I don't know how long she has, but the dr. took her oxygen off yesterday after pulling the tube, because her o2 saturation levels were high.  Which is a good thing, so she won't need the o2 when she gets home, unless she becomes real breathless, etc.
I really hate the idea of NOT KNOWING what is coming down the pike for her, like how it will all go, and how fast.  I just wish someone could tell me, ok-1st, your mom will...
then she will....and finally she will..... I just hate the uncertainty of it all-but cancer is like that, isn't it.  I am  a control freak, and have problems letting others take care of things.  I think that is why I hate this whole thing, because I WANT TO BE THERE, I WANT TO HELP HER, and I WANT TO EASE HER PASSING ANYWAY I CAN.  I am an extention of her, and feel I know what she would best want.
If the family care worker is very expensive, 17.00hr, (who is from a good agency which is insured and bonded, and drives her own car, and has good references ) doesn't work out for some reason, then I really think I will lose it, because then the nursing home will be the only alternative. A private LPN is difficult to find, and is even more costly per hr. I tell you, it is just ridiculous how hard this is and how you really have to look under every rock to get the information. But I will say, thank You for giving me much needed advice and helpful suggestions.

[tompkin44]

I know what you mean about wanting to know how much time your mom has left, that is a very normal thing to want to know.  My dad's one oncologist who I felf was very smart and almost too blunt did give me a time frame when I really pressed him.  He said about 1 - 2 months, my dad passed away 2 weeks after that.  But you can see them weakening, my dad had more headaches and hiccups.  Also, his liver seemed to swell up, you could see his right side of his stomach swelling, 2 days before he died.  Just be with your mom as much as you can and be as patient as you can so you don't feel guilty after.  One thing, we were praying that God would send an angel to comfort my dad, 5 hours before he died he was drifting in and out of sleep and I was sitting beside him.  He wanted me to read him Romans chapter 4 which I was between his little rests.  During one knap he opened his eyes, turned his head to me and asked if I had my hand on his head.  I said no.  He closed his eyes and slowly said, "Someone had their hand on my forehead".  I do believe God had an angel their for my dad.  He passed away in his sleep.  Believe me, my heart goes out to you, it is so hard but keep loving your mom.  Do you have children?

[hm05]

No, no children, yet.  I think maybe I will try soon.  My husband and I have been dealing with so much over the past 5 years.  First, 9-11, we were both there that day, and then my husbands Dad died one month before our wedding, and just one month after we visited him, for the 4th of July.  My husband lost his mom many years before, so now, it is like bang, bang, bang.  HIs father, my father, now my mother. I do feel a heavy weight is around me, and my pain is not lifting. I feel so helpless.  I have a fair amount of guilt already, from when I was her caregiver after her lung surgery.  We all thought she wasn't getting better, or getting out of bed, because she was just in her depression, but now I feel sooooo bad, because obviously, she was sick right along.  I so pushed her, and yelled at her, to get out of bed and enjoy her life, that she is one of the lucky ones whose cancer was caught.  Just get out of bed and do something and live your life.  She probably really wanted to, but just couldn't physically do it. I just spoke to her on the phone, and she just can hardly put a sentence together because she can not get alot of air.  I feel so bad for her, it is just tearing me up inside.  I broke down today, and just balled my eyes out, screaming into my pillow, GOD why ?  But I do realize there is a plan for us, and when it is your time to go you go.  I just hate dealing with the agony and the pain.  It is more than a human can bear.  Do you have kids Debbie?  Did they know their Grandfather?