My dad has been on Hospice at my house for 5 days.They are so wonderful and are even sending him a massage therapist.
The oncologist called me this morn to see how he was doing and to offer Alimta (chemo drug) as paliative treatment to head off forecoming problems such as pain and fuild around the lungs.
Hospice said it wouldnt be covered so they would have to revoke us because we are seeking further treatment.They said they would pick us back up later.
The hospice nurse said it was our decision and that was just medicare rules.He wasn't telling us not seek further treatment.
The doc said the chemo won't prolong my dads life.
The purpose of hospice is comfort-so why should we get the chemo for comfort?
I'm very happy with the care my dad is receiving on hospice.
Any thoughts please????

Hi ....pls read my earlier post. I went through the EXACT same thing last week. Long story short. Dad was just diagnosed w pancreatic cancer that is in his liver and bones too. Onc said he has 2 to 4 months and if he goes through chemo maybe another couple of months. My dad started gemzar chemo last week, he has had two rounds. It will not cure him but will help with pain (hopefully) and he may live another couple months. When the onc found out we were meeting w hospice they said then they would stop chemo because hospice does not consider that their philosophy (even though it would not cure my dad or make him live much longer) At anyrate, we looked into it and the gemzar is considered aggressive chemo per medicare even though gemar is also palliative. SO we are sticking w the chemo and dropped hospice. As of now my dad does not NEED hospice, so we decided to go with the treatment.

Hope this helps some....

Thanks K.I wonder what kind of condition your dad was in.Was he still doing things for himself or did he require assistance?
My dad has become so dependant in such a short amount of time.He sleeps most of the time and eats mostly ice cream, cake, fruit-sweet stuff.He needs assistance using the bathroom, changing etc....
He's in a much weaker conditon than ever-but everyone says he looks good.He's definetly a fighter-that's for sure.
This is such a hard decision.
I want so much for him to be well.Will the chemo make him any stronger?

My girlfriend kept with the chemo up until 5 days before she passed. She knew it was time for hospice and a family member being a nurse knew too. She became unresponsive to conversation, didn't want to eat anymore and slept most of the time. That was when hospice was called. She died two days later.

My girlfriend kept with the chemo up until 5 days before she passed. She knew it was time for hospice and a family member being a nurse knew too. She became unresponsive to conversation, didn't want to eat anymore and slept most of the time. That was when hospice was called. She died two days later.


I'm sorry about your girlfriend Mel.This is such a terrible thing to deal with.Some get cured and some don't-just don't understand it......

My dad was so sick I didn't think he would be coming home from the hospital.The 1 st nite/morning we got there I called my mom & sister at 5 am to come up there because thats how sick he was.I stayed with him every nite (crying & praying) when he was sleeping.

When the palliative care lady came to talk we us on that Wednesday-she explained our options. I had asked well could we stay here-in the hospital.The entire staff on that unit was outstanding and really cared for my dads needs-answering the call bell within seconds. The answer she gave me was that if it was a matter of days then yes-but since we are talking about weeks-then no.She didn't say how many weeks-though the oncologist said 2.I just hope that they are both wrong and that my dad lives for many years to come because I love him so much and can't imagine him going away.Miracles do happen!

I had also been praying for my dad to be able to come home -but really didn't have much faith in it happening-as he was so very sick-and especilly all of a sudden like that.But-my prayer was answered.

Today he had a good day.He didn't require much meds,didn't cough as much and we took him for a walk in his wheelchair,where he ran into an old buddy of his from over 70 years ago.This buddy of his had mentioned how he had just been talking about him a few days ago with a mutual friend.What a coincidence! It was a good day.

Anyway,thanks for listening.I'm so glad for this board and glad to have found it.

Hi Marie, can I ask what kind of cancer he has? My dad was originally told 1 yr, then after the biop results 2 to 4 months w chemo maybe buying a couple more if it works. This has been so devasting for me. I know exactly what you are going through and can hardly hold myself above water.

He had his 2nd chemo yesterday, I do not think it will give him more strength but will help w pain and prolong his life some. Do you know what kind of chemo your dad was offered?

My brother moved from CA and is staying w my dad to see him through. My dad has good days and bad days. The good days entail walking around his apartment complex and being more chatty. The bad days he is in a lot of pain and depressed. There have been more bad then good days. My brother cooks his meals, etc. At this point, my dad does not need help washing, but may soon. When my family met with hospice they recommended a chair for the shower.

Anything could happen in 2 yrs, you never know when that miracle drug will come out. I even try to keep up hope in this even with my dads prognosis.

Marie, I am glad your dad got to come home. Isn't it amazing how they fight? I didn't think my friend would come home after being in the hospital for 3 weeks. She had 4 drains put in but the reason she was taken to the hospital was she lost all her muscle enzymes and couldn't even move her legs. She turned into a case study as this had not been seen before. By God, she went home.
What I found amazing is the last night I received a call about midnight that her time was close. I said I would jump in the car and be on my way. I had to throw on some clothes, grab a cup of coffee to wake me up and drive to her house an hour away. I even got on the wrong freeway and had to backtrack. I got there and her husband told her I was there. He had told her I was on my way. She died within 10 minutes of me getting there. I had enough time to tell her what a great friend she has been all my life, and to enjoy riding her horses through the meadows. I truly believe she waited for me.
I am so sorry both of you are going through this with your dads. They are lucky to have devoted daughters. Who knows? There are people who have been around alot longer than the doctors have said

Thank you for your story Mel.That is so beautiful how your friend waited for you....
K,we are goingthrough the same thing....
My dad has lung cancer.We never did a biopsy so the doc is calling it stage 3 b and believes its a NSC adienocarcioma.(I know I spelled that wrong)
The x ray revealed a baseball size mass on his left lung.
The hospice doc just left.She asked my dad what he wanted to do & he said get rid of it.
She explained we cant remove it.Then told him if he were to opt for chemo they can put him on homecare (but remove the hospice.)
She told him to think about it.
She said option 1-get chemo,possible live longer,but feel sicker
or 2-stay on hospice,be comfortable and live for a shorter period.
Ive taken a medical leave from work to care for my dad.Im glad I was able to.He needs help around the clock.Using the bathroom,changing,turning in bed-although he walks from the living room to the bathroom or kitchen (with assistance.)
Yesterday he hardly needed any meds and appears to be doing better.
Weve been lucky that he doesnt have any pain.The morphine (a small 5 mg dose every 8 hours as needed) is mostly for his breathing.)
He had a little pain in his chest @ the hospital but hasnt since he's come home.We didnt need the morphine last nite so I think he's doing better.
K,how did your dad do on the chemo?
They want my dad to have Alimpta.(which can cause trouble breathing & chest pain-the same thing we are trying to avoid or make better.)
My mom is on navelbine which has really helped her.She has stage 4 breast cancer w/ mets to bone & liver.
Now she just has a tiny spot on the liver.
What kind of chemo is your dad on K?

OMy you are dealing with both parents having cancer? Geez. I am glad to hear your dad is pretty comfortable.I can only assume if I were in the same shoes, I would just want to be pain free and if that meant a shorter time here so be it, but then again, I can only speculate. Who's knows what I would really do? How nice you can take off work.
K how did the stent thing go?

Bad day....

My dad was supposed to have his stent put in a 11 today. My sister gave him water this am as he was thirsty, told the dr and then the dr said he had to then delay the procedure by 2 hrs! So finallly when the time came, they said they could not do it as when they went in they could not get around the mass, and it was too big. They said they could do something by going through the liver, but my dad did not want it. Also he has tumors on his liver so it could be risky. So my poor dad had to go through all of this for nothing. NOW WHAT? What happens since he could not get the stent in?

Apparently my dad is getting very forgetful now....he could not remember how to set his alarm last night and keeps asking the same questions.

Cant wait to see him next week.

Sorry to hear that. What about drains instead of a stent? My friend couldn't have a stent (I don't remember if I knew why) they put drains right into the liver. She had cancer is several areas of the liver. They had to do something. She was dark brown from the bile build-up and she had personality changes too.
Her procedure was cancelled several times too. They got backlogged so it was put off until the next day. Poor thing didn't get any food or water until the late afternoon and then it was cancelled. The first drain didn't do anything so it had to be done again. She ended up having several drains but it sure did help.

I just reread your post. It sounds like what they want to do is the drain. The stent is put down the throat and my friend couldn't have that either. When they say it is too risky, what are they referring to? She had a twilight sleep, was in about an hour and awake and eating very quickly.

They must be referring to the drain...but my dad doesnt want to do it. Perhaps he was just tired and needs to understand why he needs it. So your friend was in a twilight sleep for the procedure? I wonder what happens if my dad chooses not to do this. I feel so bad for my poor dad. This is so hard.

can you do a little research on the effects of bile build-up? As the toxins build, it can affect his thinking, cause itching, ascites and his skin will turn very dark.
It had to be very frustrating for your dad.