CancerCompass message board discussion started by FamilyFighter on 4/28/2008 http://www.cancercompass.com/message-board/message/all,23524,0.htm Sun, 06 Jul 2008 00:00:00 GMT Sun, 06 Jul 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I am wondering if anyone can give me any information about my dad's latest difficulty with fighting this terrible disease. He is having a very difficult time with a "full" feeling all the time. His stomach is very distended and now he is running a fever of 100.6. My mom took him to the Dr. and they drew blood and did an xray but then just said "we'll call you." "If you don't hear from us, then head home and get this antibiotic filled."  I am so mad right now! I feel like they are just saying stuff to pacify my parents and they are of the generation to just take what the doctor tells them and do nothing else. I am so afraid that they just arent doing enough!  Also, does anyone have any experience with cancer treatment centers of america? I am thinking we are going to have to try somewhere else. Maybe I am in denial but I am only 32 and I am not ready to lose my father! He is not ready to give up either! Please someone help me! My husband is deployed and my father is sick and I am about to lose it!Thank you and God Bless FamilyFighter Mon, 28 Apr 2008 00:00:00 GMT  On 4/28/2008 FamilyFighter wrote:I am wondering if anyone can give me any information about my dad's latest difficulty with fighting this terrible disease. He is having a very difficult time with a "full" feeling all the time. His stomach is very distended and now he is running a fever of 100.6. My mom took him to the Dr. and they drew blood and did an xray but then just said "we'll call you." "If you don't hear from us, then head home and get this antibiotic filled."  I am so mad right now! I feel like they are just saying stuff to pacify my parents and they are of the generation to just take what the doctor tells them and do nothing else. I am so afraid that they just arent doing enough!  Also, does anyone have any experience with cancer treatment centers of america? I am thinking we are going to have to try somewhere else. Maybe I am in denial but I am only 32 and I am not ready to lose my father! He is not ready to give up either! Please someone help me! My husband is deployed and my father is sick and I am about to lose it!Thank you and God BlessGet the car packed and drive TODAY to Johns Hopkins or MD Anderson. Figure out where to stay when you get there. This is where the experts are at. I would lean towards heading to the Sol Goldman Pancreatic Cancer Research Center at Hopkins - they are arguably the best. They have a one day screening of patients every Tuesday perhaps (check, call RIGHT NOW! - look them up online... NOW! See if your dad is a candidate. Don't listen to what your dad says - just do it.If it's too late for that and Gemcitabine and Tarceva Chemotherapy is not an option either, then get him a bottle of protocel. again, do some internet research on protocel.I lost my dad in October to pancreatic cancer (pc). He thought that the pc must have been a metastasis of his prostate cancer...he was wrong. And he wanted to analyze and make complete sense of everything he heard or did. There is no time for that.Best. Andy  Andy_AJP Tue, 29 Apr 2008 00:00:00 GMT I agree - if you are uncertain about your dad's care - get another opinion.  MD Anderson (in Houston) is a great hospital.  But do your research on line first - make some calls.  You aren't the first to "cold call" a hospital, they'll know where to direct you.  All my prayers. Runabout Tue, 29 Apr 2008 00:00:00 GMT Personal experience speaking.Your father appears to have fluid accumulating in his stomach and it needs to drained. Perhaps as much a liter to four liters may be collecting in his stomach. See your doctor and and confirm. However, be sure that this will have to done on a regular basis and may require a valve to be installed on his stomach to relieve the pressure. This usually happens when there little time left 1 to 3 months .The most promising treatments are not offered in the states. Do your research.HIFU Canada, UK, JapanTriology Stereostatic Radiation  Bill High intensity focused ultrasound is not available in the US except for clinical trials. It does sound promising, though. Basically non-invasive, fewer side effects and some good results.    Billt01752 Wed, 30 Apr 2008 00:00:00 GMT How kind of you to be so positive and give my father 1 to 3 months! Listen, I'm sure that you are just trying to help but I don't need comments like that right now! No one here is ready to give up and just say "well, looks like we only have a few months left! All the tests they just ran show no increase in fluid in his belly and the blood cultures have shown nothing. In addition to that, we. Ahave started juicing some of his food and he is doing better. I'm sorry if I sound like a whiney stupid woman in denial but no one is going to tell me that my dad doesn't have much time left! We are not about to quit, that's just not us! FamilyFighter Wed, 30 Apr 2008 00:00:00 GMT My best friend was diagnosed 2 months ago with Stage IV metastic PC (spread to lungs & lymph system).  Her stomach is very DISTENDED (looks like she's 9 months pregnant with twins) & SWOLLEN, (medical term:  Ascites)  hard to breath (pressure on lungs), plus her legs are HUGE, swollen & have cracked, have blisters on them.  She did have a home health nurse wrap them, but didn't like it, so we keep them elevated as much as possible and use Lubiderm lotion on her daily to keep them from drying out.  Last week, she had an Outpatient procedure (periosantisis sp?)  where they drained 6 large bottles of fluid from her stomach & it wasn't that hard on her--the most pain (sting) was when they had to "deaden" the area 1st, but IT REALLY HELPED HER.  There was an immediate "feeling better" response from her.  Driving home from the hospital, she could breath better and could get around much better walking, etc.  Her stomach leaked for 4 days after the procedure, but has finally stopped.  She was VERY sick & uncomfortable b/4 this procedure.  Her stomach is still very large, but nothing compared to what it was before.   Talk to your Dr. to see if this will help your Dad.   John Hopkins has a great research website.  Although everything we read is negative about this horrible disease, I believe in the power of positive thinking....  you've always got to have a "plan" to keep patients motivated & to not give up.  Love, prayers, positive thoughts & support go a long way.  Warmest wishes to you & your Dad. LesPaulyGirl Thu, 01 May 2008 00:00:00 GMT Did your father have a whipple?  I'm asking because I found myself in a similar situation as you.  My father had a whipple and now his stomach looks as though he's 9 months pregnant, even though the rest of him is very thin.  I was convinced at first that he had fluid in his abdomen (acites) and questioned Dad's doctor when he told us there was no fluid.  As it turned out, my father developed the largest hernia along his surgical incision that any of his physicans had ever seen.  Given my Dad's medical history, it was decided that the risk of surgically correcting it was too great, so nothing is being done.So it is possible that a distended stomach can be cuased by something other than fluid. in Search of Answers Fri, 02 May 2008 00:00:00 GMT  On 4/30/2008 FamilyFighter wrote:How kind of you to be so positive and give my father 1 to 3 months! Listen, I'm sure that you are just trying to help but I don't need comments like that right now! No one here is ready to give up and just say "well, looks like we only have a few months left! All the tests they just ran show no increase in fluid in his belly and the blood cultures have shown nothing. In addition to that, we. Ahave started juicing some of his food and he is doing better. I'm sorry if I sound like a whiney stupid woman in denial but no one is going to tell me that my dad doesn't have much time left! We are not about to quit, that's just not us!  mimi3 Sun, 04 May 2008 00:00:00 GMT  On 5/4/2008 mimi3 wrote: On 4/30/2008 FamilyFighter wrote:How kind of you to be so positive and give my father 1 to 3 months! Listen, I'm sure that you are just trying to help but I don't need comments like that right now! No one here is ready to give up and just say "well, looks like we only have a few months left! All the tests they just ran show no increase in fluid in his belly and the blood cultures have shown nothing. In addition to that, we. Ahave started juicing some of his food and he is doing better. I'm sorry if I sound like a whiney stupid woman in denial but no one is going to tell me that my dad doesn't have much time left! We are not about to quit, that's just not us!I am so glad you responded in this way!  No one has the right to give anyone a time limit. Not even doctors. My Dad also has pc. It has metastasized to his liver. He was diagnosed in Sep.2005 also had Whipple. Dec. 2005 we took him to MD Anderson in Houston. He was in a clinical trial with heavy duty treatment. After, followed up with 6 mos. chemo. Was cancer free until Jan.2008. He took gemzar and tarceva for 3 mos. Scan last week said the tumor has increased in size. Now we will try Xeloda. Also we are talking to University of Pittsburgh for second opinion. We know our fathers better than anyone. Keep up the good fight! I will pray for you, your father and your family. Keep me posted.  Kim    mimi3 Sun, 04 May 2008 00:00:00 GMT  On 4/30/2008 FamilyFighter wrote:How kind of you to be so positive and give my father 1 to 3 months! Listen, I'm sure that you are just trying to help but I don't need comments like that right now! No one here is ready to give up and just say "well, looks like we only have a few months left! All the tests they just ran show no increase in fluid in his belly and the blood cultures have shown nothing. In addition to that, we. Ahave started juicing some of his food and he is doing better. I'm sorry if I sound like a whiney stupid woman in denial but no one is going to tell me that my dad doesn't have much time left! We are not about to quit, that's just not us!  mimi3 Sun, 04 May 2008 00:00:00 GMT