mlepp0416
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CindiS: Where can you order Enlive from? I know you said Abbott Labs, but do you have a phone number or address? Can you order it off the Web?
My husband Tom has CC and had a left liver resection, but reoccured with a new inoperable tumor in Nov 2009. After chemo and radiation that tumor is dead, but still blocking the bile duct, so he has an external drain. Just 3 weeks ago they found 5 new tumors in his liver and a met to the pelvic area, so he has started on IV Chemo. Tom has lost an amazing amount of weight throughout all this and lately he has not been able to tolerate Ensure or Boost Plus.
I would like to try this ‘enlive’ so if you could post the information it would be greatly appreciated.
Thanks in advance.
Go with God and you tell Richard to KEEP KICKIN’ THAT cancer.
Margaret
Hi Charley:
My husband Tom just had a bout with Ascites (build up of fluid in the abdomen). They drained it off with a procedure called Parentesis (not sure of the exact spelling). However, they make a very small incision (more like a puncture) in the loser abdomen, then insert a small tube connected to a large bottle that has a slight vacumn, and the fluid drains into the bottle. The entire procedure took less than 15 min. They use ultrasound to determine first off if there is fluid there and if so, they drain it off. Thankfully so far Tom has only had Ascites once in over two years.
I’m not certain if it’s a sign that the cancer is growing, but as my daughter (RN) explained to me, the person with Ascites generally has an inbalance of protein in the body and then the body tries to compensate and allows the arteries and veins to ‘leak’ fluid from the blood vessels. You may need to increase the protein in your diet. Eat cheese, meats, etc. Anything with protein to increase your level of protein. Tom tries to drink Boost Plus or ensure each day to help with his protein levels.
As a side note, Tom has new tumors and a met to the pelvic area which were found after his bout with Ascites. However, no data to suggest a correlation between the new tumors and the Ascites.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Kris: So hopeful for you and that the docs figure it out quickly for your sake! Sending lots of prayers your way from Wisconsin.
KEEP KICKIN’ THAT cancer girl! We still need you here!
Hugs,
Margaret and TomJust yesterday I received a request in the mail to donate to Breast Cancer awareness and the suggested donation was $10.00. My comment was, “Ha, when they ask for a donation to a rare cancer like CC then I will be willing to donate. Why are they still asking for money for Breast Cancer research, why not something that does not get any research” then I tore up the request and threw it away.
How does one get someone to fund research for Cholangiocarcinoma? Do we need to have some famous people come down with this cancer before it gets any recognition?
Just venting,
Margaret
Terry….please take all the time you need to grieve over Wayne. You are correct when you say that ‘people just don’t get it’. If that particular person has never lost a loved one, such as a spouse, they certainly could not know how you feel. Good for you, telling your boss that! Perhaps it’s just want she or he neede to hear. No one can know what YOU are feeling unless they are walking in your shoes.
I’m certainly glad that you are seeing your doctor. Perhaps you could ask for some anti-depressant medication to help you with your grief over Wayne. And you may want to increase your counseling sessions as well, or join a support group for people who have lost a loved one.
Please come back to visit this site often and if you feel the need to rant and rave, then do so, that is why we are here.
I will keep you in my thoughts and prayers Terry.
Go with God,
MargaretHi Kathy: The best thing to remember is that no one has an expiration date stamped on their butt! My husband Tom was given 6 months, just about 12 months ago! The oncologist that he was seeing gave us no hope, and said that radiation and chemo would not help. Thank heavens that we did not listen to him, else I’m certain that Tom would not be here today.
He did receive radiation and chemo and now does have 5 new tumors and a met to the pelvic area, but his new oncologist is very optomistic that she can still help with IV Chemo – he just had his 2nd round on Friday and his bilirubin and Tumor markers are coming down which is awesome.
As he starts his 12th month of life, we too are looking forward to another Thanksgiving and Christmas together. Never take ‘no’ for an answer, instead ask “What else can we try?”
I learned this early on in Tom’s journey with CC. It is a roller coaster ride for certain, don’t let anyone fool you on that! However, with that being said, enjoy each day to it’s fullest. Make those memories for your family and loved one. Take those ‘good’ days and do something special, and on the ‘bad’ days, sleep, read, watch TV or just lay on the couch with a snuggly blanket and enjoy being pampered, if possible.
I will add you to my prayer list.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Nick: Welcome to the site that no one really wants to join, myself included. Having said that, the only advice that I can give is to hang in there. My husband has CC and we have been fighting this battle for almost 3 years. When his doctors say “We can’t” I find myself asking “Why Not” or “What else can we do”?
Second and even third opinoins are sometimes necessary. Have you considers the Cancer Centers of America? I know they have a center somewhere near Chicago….or Mayo Clinic in Rochester? Being that your father seems to be in a somewhat critical situation, this may not be possible.
CC is a very evil cancer, and there are not a lot of doctors who have encountered a case of CC during their career. A ‘for instance’ is my husband Tom, he is the first known case of CC that his doctor’s in the Green Bay Wisconsin area have ever encountered. Before we started doctoring with them, his Veterans Administrations Oncologist gave him 6 months to live. We are almost in the 12th month of life. If we had listened to that Oncologist, surely Tom would be gone by now. But we didn’t listen and sought other opinoins and therefore we have had the past 11 months to build those memories. My husband was diagnosed at age 61.
It is very important that your father has someone in his corner to be an advocate for him. You (or someone) needs to be doing the research and asking the questions. Please do not accept evasive answers from his doctors, they need to share with his family exactly where he stands and why.
The worst part of this cancer is that it can hit a seemingly healthy person very quickly because it is a very hard cancer to detect and many times it is not diagnosed until it is too late. My husband was fortunate in that he was on a cholesteral lowering drugs and had blood work done every three months. In Jan 2008 his blood work was fine, and in March 2008, his liver enzymes were 10 times elevated. That was the first clue that something was wrong. In June 2008 he underwent a left resection – where they removed 3/4’s of his liver…and in Nov 2009 he presented with jaundice. New unresectable tumor in the remaining right biliary tree. Radiation and chemo zapped that one, however, now he has 5 new tumors and a mass in the pelvic area. More chemo now but he has had an external drain tube for the past 11 months, therefore keeping his color more normal.
As Lainy says, it may be time to call in Hospice if your father’s condition is as dire as it sounds. They will ensure that he does not suffer. My husband and I have discussed Hospice and we will rely on them when he gets to that point. I certainly do not want him to suffer. Sometimes there is just simply not anything left for the doctors to do. My husband’s son always says “Well they have to be able to do something” but he does not stop to realize that there are times when simply put, nothing more can be done.
Please accept my prayers for your father and for your family. My heart goes out to you. Spend as much time as possible with your dad, let him know that you love him, he needs to know that!
Go with God, my thoughts and prayers are with you.
Margaret
All:
Good news again today! Tom’s bili level is going down. It was 22 last week and today it’s at 17! Yipee Skippy! I know with the new drain tube with more holes in it that was inserted yesterday may be the reason for the bili level going lower so thank heavens for that!
He was able to get his second round of IV chemo in today, so the plan is that he will also get another chemo treatment next friday. We are keeping our fingers crossed on that!
I know that in a few days, fatigue will be setting in for Tom, I only hope it’s not as bad as the last time. Boy if kickin’ would really work, I’d be kickin’ that cancer right out of him! His doc said his tumor markers were also coming down, at last blood tests they were up to 194. So that is even better news!
Go with God and KEEP KICKIN’ THAT cancer.
Hugs,
MargaretSaskia: So sorry to hear about your father. This is a very evil cancer – I know this first hand as do many others on this site. I have watched my husband go downhill over the past almost three years since his diagnosis.
My thoughts and prayers are with you and your family. As Lainy says build some lasting memories with your father. Let him know that you love him.
Go with God.
MargaretThanks Marion and Lainy! The doc injected a contrast and can see no new blockages in the bile ducts…so that is good. He again modified the drain tube with extra holes so he’s hoping that will be successful in bringing down that bili level.
It’s a good thing that we have Dr. Dempsey in our corner. He is such a trooper and makes sure that Tom gets awesome care during these tube exchanges. He’s the only one that is ‘allowed’ to change Tom’s tube. I think that in the past year he’s done at least 8 or 9 of these tube exchanges. We have been averaging an exchange about every 4 to 5 weeks…
We are STILL KICKIN’ THAT cancer. And tomorrow Tom goes in for Chemo so here’s to hoping that his blood work comes back good so he can receive the chemo….(Gawd, here I am hoping that they are successful with filling my hubby with posion chemicals)
Hugs,
Margaret and TomTom goes in for ‘another’ tube exchange today. Bile has been leaking from the ‘hole’ in his side therefore soaking the bandage, so we suspect that it’s getting clogged. This could account for his higher bili level as well. At last blood work it was up to 22…
Hopefully a new tube will resolve that somewhat…wishing for the best but planning for the worse. Since he has 5 new tumors in the liver, and since this is bile duct cancer, I suspect that one of the new tumors is the cause for the elevation of his bili level…(new tumor blocking a bile duct that was previously working) DRAT! Have I told you lately that I HATE THIS cancer???
One day at a time…I keep telling myself. Well, gotta go and get him to the hospital now.
Go with GOD and you guys just KEEP KICKIN’ THAT cancer!!
Margaret
Jim: welcome to the site that no one really wants to join. My husband was diagnosed with CC in March 2008, had 3/4’s of his liver removed. His liver did regenerate, but about 18 months later presented with Jaundice. New tumor, inoperable. Treated with radiation and chemo. External Drain tube/bag put in to lower bili level. Now has 5 new tumors and a mass in the pelvic area. Bili currently climbing, up to 22 at last blood work. Started IV chemo and now on hold because of low blood counts. What a roller coaster ride we have been on the past almost 3 years.
Tom had been on cholesterol lowering drugs prior to CC….
Don’t know for certain what we will be hit with next, but planning for the worst, expecting the best.
Here’s to hoping you have clean scans for a long time to come!
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Lainy: I’m sure that Teddy enjoyed getting a shower by that darling young girl!!
Tom’s ex father in law had Alzheimer’s and when home health care came in to do his daily care’s (including a shower) he reported to Tom “Guess what, I had a cute little gal come today and she helped me shower, and you know what? They wash EVERYTHING, it was great!”
You tell Teddy that I’m praying to St. Anthony for him, cause I want St. Anthony to protect him too!
Go with God Teddy!
Hugs,
MargaretKris: Positive thoughts and prayers coming your way! Keep that fighting spirit up and at ’em!
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
