How much time?

My father was diagnosed 5/18/07 with PC with mets to liver stage 4.  The oncologist would not give him the Gemzar unless his total billi was done under 5.  So we went and got some external drains and reduced it to the appropriate number.  The chemo nurses gave the drug over and hour.  Some say it needs to be given over half hour to be effective True or not?  So he got one round.  Three treatments one a week for three weeks.  Then they said his billirubin went up and could not treat.  We went in for drain changes and got an infection.  Now they say get hospice.  So we are home with hospice, no care.  Some of you post that you have been doing this for 3 years how come we are going so fast?  Treatment? My father is only 64 and has never been ill a day in his life.  Never Smoked, drank, or was ever over weight. Here it is 8/29/07 and the doctor says there is not a thing we can do but make him comfortable. Ha Ha ha with a belly that is filling and no appetite so weak he can not stand to even talk with us for more than a few minutes.  How is that comfortable?  I suppose the great doctor will say we should load him up on pain meds ,which dad says he is not in pain, just to make him comfortable.  Any help?  

Kinddad1 

I thought I was reading my own families story when I saw yours today.  My mother in law just got officially diagnosed 2 weeks ago but has been in horrible pain since may.  Now we finally know why after of course gallbladder surgery and back stuff.  She has so much fluid in her belly and legs now and is sooooo weak she can't even get out of bed anymore to go to the bathroom.  It is hard for her to roll from side to side.  For some reason she has fallen through the cracks in the hospital system of oncologist and no one really seems to be taking charge of her care.  She is going down hill so fast.  It is so hard on the family especially her husband.  We too want this pain and misery to end.  This disease is just torture to watch and to go through.  She has only had 1 day of chemo last week and we don't know if she will be getting another.  She is now anemic.  Everyday its something new.  I totally understand your pain.  hang in there. 

stanzi

Know the feeling. My husband was diagnosed on 8/3/07,  just today we saw the GI specialist.  Haven't even seen the oncologist yet.  Wondering also how much time we really have.  Pray and know that all is in God's hands.

Aurora

On 8/29/2007 kinddad1 wrote:

My father was diagnosed 5/18/07 with PC with mets to liver stage 4.  The oncologist would not give him the Gemzar unless his total billi was done under 5.  So we went and got some external drains and reduced it to the appropriate number.  The chemo nurses gave the drug over and hour.  Some say it needs to be given over half hour to be effective True or not?  So he got one round.  Three treatments one a week for three weeks.  Then they said his billirubin went up and could not treat.  We went in for drain changes and got an infection.  Now they say get hospice.  So we are home with hospice, no care.  Some of you post that you have been doing this for 3 years how come we are going so fast?  Treatment? My father is only 64 and has never been ill a day in his life.  Never Smoked, drank, or was ever over weight. Here it is 8/29/07 and the doctor says there is not a thing we can do but make him comfortable. Ha Ha ha with a belly that is filling and no appetite so weak he can not stand to even talk with us for more than a few minutes.  How is that comfortable?  I suppose the great doctor will say we should load him up on pain meds ,which dad says he is not in pain, just to make him comfortable.  Any help?  

Kinddad1 

I am in the same position you are.  My mom was diag 3 years and 2 months ago.  We are at the end of the battle.  And I am scared to death because I am the caregiver.  The Dr's that my mom had did not know anything about how long,  I say this because she lived way beyond what they said that she would.  They said she had a 20% chance to make it 2 years and look where we are today, still fighting.  So, don't listen to what the Dr's say- live everyday to the fullest!!

First, you may wish to consider getting your Dad on fish oil with EPA and DHA. One study suggested 2.2 grams of EPA and 1.4 grams of DHA.  According to the lit, It will help stabilize weight, increase lean mass, improve appetite and help him feel stronger.  I've got three or four medical journal articles here all referencing it and it has worked with my Dad.  His weight has increased from time of diagnosis and he feels better.  He also had several liters of fluid in the abdomen, they tapped the fluid using CT to guide the process and he felt sooo much better afterward.  We were told the Gemzar was not working based on CT but I read a study suggesting that CA-19-9 markers tended to be 2-9 months ahead of the scans.  Based on the scan the doc was going to discontinue treatment.  He changed his plan as we questioned the CA-19-9 having gone down and much to our delight his latest scan has caught up and the tumors regressed.  Additionally, I've read many,many studies about the effects of green tea on pancreatic cancer.  I have him drinking 2-3 cups a day.  There's a fair amount of evidence pointing to potential efficacy of green tea- but the biggest thing I think is important here is that even though our medical team dismisses the green tea, they all agree it can't hurt.  

 In short, based on my limited experience here (no medical training) I would suggest,  second opinion, fish oil capsules, protein shakes (high calorie, low sugar), fluid tap, green tea with high levels of EGCG and pay attention to CA-19-9 not just scans to determine efficacy of treatment.  

Never heard about chemo being dependent on billi scores, but again I have very limited knowledge.   

Nearly forgot, my brother is an essential oils believer.  Limonene- citrus oils could also be used.  Fortunately, my Dad loves a big pitcher of iced green tea with oranges (peel and all) lemons too, squeezed into it.  Again, doesn't seem like it could hurt- and since Dad thinks water tastes bitter the tea goes down easy.

J