mlepp0416
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Ashley:
My husband Tom had NO symptoms, but because he was on a cholesterol lowering drug, he routinely had his blood work checked every three months. In Jan 2008 his blood work was totally normal. In Mar 2008, his liver function blood tests were 10x elevated. That was the first sign that ‘something’ was wrong. It took another 2 months to pinpoint (via and ERCP) that there was a narrowing of a bile duct in the left lobe of the liver. During the ERCP they did a ‘brushing’ and those cells indicated cancer, cholangiocarcinoma…before that fateful day I’d never even heard of cholangiocarcinoma. Tom never had any symptoms, did not feel ill, was not jaundiced or anything…
Go with God, and KEEP KICKIN’ THAT cancer.
Margaret
Ritchie: Before Tom had his radiation treatment, his radiation doctor did not discuss with us the fact that the radiation ‘might’ destroy the bile duct. And we do not know for certain if radiation did destroy it. At this point all we know is that the new tumor was inoperable. And the only way to kill the tumor was radiation since surgery was not an option. I only wish that they had tried to get a stent into that portion of the bile duct BEFORE they had done chemo. It is unfortunate that they did not think of that before radiation! It is possible also that the tumor had already destroyed the bile duct (we will never know for sure now)…so my suggestion is before undergoing radiation one should request that a stent be placed prior to radiation. That should (?) resolve the problem BUT one should also ask what would effect would radiation have on a stent? Could it fuse the stent to the bile duct? Arghhh, so many questions that I can think of, now, after the fact!!!
But we will never get the chance to do this again, so we live with what we have. One now 64 year old man with Cholangiocarcinoma who underwent a left lobe resection, who re-occurred with an inoperable tumor and who now has an external drain and who has entered the 16th month of life AFTER being told he had 6 months at the most to live. So thank you very much Mr. Oncologist, but my husband has proved you wrong and these extra 12 months that we got to spend together have been a wonderful memory building time for us!
And 2nd, 3rd or more opinoins ARE important. Just think, if we had listened to Mr. Oncologist, Tom would not be here today!!!
Go with God, and KEEP KICKIN’ THAT cancer.
Margaret
Ahna:
My husband Tom had 3/4’s of his liver removed three years ago…If your dad’s tumor is in the ‘common’ bile duct it is true that a new common bile duct can be recreated with the small intestine (as Tom’s surgeon explained to us). Since his original tumor was inside the left lobe of the liver, they did not have to remove the common bile duct, but did cut out most of his liver. He now has a new tumor that is blocking the remaining bile duct and involves the hepatic artery so another surgery is out of the question for him. But the excess bile that cannot get into his intestines is being drained off with an external drain (keeping him from turning into the yellow man)I would certainly encourage your dad to get another opinoin! (or more) And to find a doctor who has more experience with this type cancer.
Go with God.
MargaretRae: So sorry to hear about your Mom’s passing. She is at peace now. Prayers and a great big HUG for you coming your way.
Go with God.
MargaretCathy:
Tell your Dad that the draining of the fluid is a very simple procedure. The paracentesis only takes about 30 minutes, if that. It can be done on an out-patient basis. My husband Tom has had to have it done and his took only about 20 minutes, and they drained 2 full bottles of fluid off his abdomen. He got immediate relief from the discomfort that the fluid was giving him. Luckily he has never had to have it drained again. His abdomen did start swelling with fluid a 2nd time, but there was not enough fluid to drain it safely. You have to have a clear pocket of fluid, else there is a risk that they could ‘nick’ the intestines or the bowel and they won’t do it if there isn’t a clear pocket of fluid they can tap into. The incision they make is so small that they just put a bandaid on it. No stiches or anything.
Tom was one happy man after the fluid was gone. Now he takes a water pill every other day and that seems to be keeping the fluid at bay…
Hugs, and prayers coming your dad’s way from Wisconsin.
Margaret
Lainy wrote:Ladies, our lawyer introduced herself to Susan the Director today via a phone call. She said That I want a meeting with Susan and the Medical Physician over all 22 Hospice facilities. She let her know I had a list of changes I would like to see implemented. Now the inhumane deaths are already up to 6 -8. I will call tomorrow or Monday and set the date. Also Monday I am picking up the medical file from Hospice and IF there is any doctoring of meds not given I will know. Oh get this! I got a statement from medicare that they paid $8,000 for Teddy’s 4 day stay. 8K and they changed his gown once, he didn’t eat, they didn’t change his sheets, and he didn’t get meds. RIP OFF? Heck they hardly even came in his room!Lainy: I work for an insurance company, not Medicare, however, you can contact Medicare and file a complaint with Medicare about the services that Teddy did NOT receive at that Hospice Facility. It’s called a Quality, Care, Attitude complaint.
I know that the insurance company that I am employed with takes a complaint like this very seriously and our QCA department follows up and will take action against the provider if the complaint is found to be valid. I’m certain that Medicare would be the same. My employer will even rescind the contract(s) that they have with providers if they are proven to be neglient in the care of our of our insured members.
I’m voting for you to contact Medicare and report the facility to them. They should NOT have gotten $8,000 for 4 days of Hospice care as per what I’m hearing they didn’t even ‘earn’ a small portion of that!
You go girl! Kick some butt!
HUGS,
MargaretKim: Yes that is how it works. When I took out parental loans for my daughter’s college education, I did verify that the loans would be ‘forgiven’ if I passed away. That made my daughter’s day when I signed the loans for her. Since I’m still here, she is still paying on those loans and I’m not going anywhere soon, HA!
But in your case, what a wonderful feeling for you to know that your dad was right and you have what I’m sure was a huge burden lifted off your shoulders! So, even though I’m certain you’d rather still have your Dad with you, this is just one more way that he took care of his little girl(s)!
HUGS,
Margaret
Wow, almost two weeks with no ‘new’ developments! Tom goes in for his scheduled tube exchange tomorrow morning at 7am.
Since the episode with the high blood sugars, I have been on a campaign to get Tom’s diet changed. Only whole wheat bread and pasta now gets through the door! Diabetic candy, sugar free jam and jelly, wheat flour, wheat pancake mix, wheat waffles, diabetic syrup just to name a few! (Boy it IS expensive to eat healthy)
And I also am monitoring his daily blood sugars and managing his insulin. He has been feeling a lot better but will take another week or so to get those numbers back to where they should be. They are slowing upping his morning insulin. He was at 15 units a day and today he started taking 23 units (every three days he goes up 3 units) and I’m thinking that once he gets to 25 units a day we will be where he should be. Then he’ll only have to take his ‘fast acting’ insulin one or two times a week (and probably only when he eats something he shouldn’t be eating, when I’m not watching him!).
At first he was so worried that he would not be able to eat anything! I laughed at him and did a ton of reseach and came up with lots of things that he CAN eat and still keep his blood sugars at a more normal level.
He has taken this all in stride (amazing isn’t it?) and now asks me “Can I have a snack?” – between meals or at night, and depending on those blood sugars, then I give him some options. Apple with peanut butter (he needs the calories), 4 peach slices in light syrup, 2 cups air popped popcorn, just to name a few.
I’m certain that his tube exchange will be nothing but normal. The interventional radiologist has exchanged Tom’s tube at least 15 times so far and I think he has it down pat by now and could do it with his eyes closed!
Hugs to everyone!
Go with God and KEEP KICKIN’ THAT cancer!
Margaret
Loving Sister:
Welcome to the site that no one really wants to join, myself included! Now that you are here, you will find lots of support and will make friends and will soon consider everyone on here as part of your family.
My husband Tom also has CC. He was diagnosed in Mar ’08, ONLY because his liver enzymes were 10x elevated. He had NO symptoms whatsoever. After an ERCP, they found a narrowing in one of the bile ducts in the left part of the liver. They brushed the site, put a stent in and sent the brushings off to pathology. The result, CC. Prior to that, neither one of us had even heard the word, let alone how to spell or say it.
After Tom’s left resection, numerous ERCP’s, CTScans, 21 day stay in the hospital, no Chemo/radiation (Doc’s felt it was not necessary as they had clear margins), he left with 2 external drains. One with a JP drain the other with a bag for a ‘pool’ of bile behind the liver, the JP directly into his liver. He had those for 7 1/2 months until the liver healed.
We had 18 months and were able to do a lot of firsts (things we did after cancer) but in Nov ’09 I noticed that he’d started turning yellow. They discovered a new tumor in the right lobe of his liver. This one was inoperable because it involved the hepatic artery. His ‘then’ onc told him to go home and get his affairs in order. He said chemo/radiation would not help and gave him 6 months.
We did not listen to that! We got 2nd, 3rd and 4th opinoins. Thank heavens we did! He underwent 28 rounds of radiation, then about 5 rounds of oral chemo, Xleoda. Went a radiologist ‘read’ one of his CTscans and ‘saw’ a mass, they installed a port and he underwent about 3 rounds of Gem/Cis via IV. Upon a new scan, the ‘mass’ was gone. (??) No one can explain that one!
SO, here we are just approaching Mar. 1, 2011 we will be starting the 16th month of life. (He has outlived that onc’s dire prediction by 12 months). Just goes to show that NO ONE HAS AN EXPIRATION date stamped on their butt!
So we have again experienced a lot of ‘new’ firsts (after being given 6 months). We have had a lot of ups and downs, twists and turns in the journey. He still has an external drain tube as they were unable to get an external stent into the liver. They feel that the tumor and radiation destroyed that section of the bile duct. We even went to Mayo Clinic in the hopes that they would be able to get a stent in but even they were unsuccessful. But at least we tried! Tom will have that external drain for the rest of his life, and you would be amazed at how well you come to accept something like that. It keeps his bilirubin level low so that he does not look like a yellow man. He was very lucky that even when his bilirubin level was 24,900 he did not experience any itching or brain confusion.
He has been hospitalized about three times with infections in his liver, and they have always been able to get it under control. At times it requires IV antibotics for a few days, then oral antibotics. The last one required three weeks of IV antibotics. These infections are a ‘way of life’ for anyone with an external drain tube. We now have Tom on a four week ‘Tube Exchange’ in the hopes that will curtail an infection from starting with the tube. So far it has been successful.
Tom just turned 64. Your brother has his age on his side. Tell him to stay positive (attitude is key), ask questions, do research on this cancer. If he is told ‘no’, he should ask what else they can try. He wants to be certain that his doc’s have knowledge of CC or a physician base that they can tap into. Tom’s doc’s here in Green Bay, Wisconsin also work hand in hand with doc’s from Aurora St. Luke’s in Milwaukee, Wisconsin. Seek 2nd (or more) opinoins if necessary. He needs an advocate to be with him for all doc visits. Someone to take notes, better yet take a digitial tape recorder and listen to it after he gets back home. That recorder is invaluable because as you ‘re-listen’ to it, you WILL come up with other questions. Write down your questions and present your list of questions to the doc and any doc worth their fees should be able to give you answers, and if they don’t know, ask them to research it and get back to you.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Mother25,
My thoughts and prayers are with your dad and your family. Your mom did the right thing by calling the rescue squad, as his condition was a life or death situation.
I think your children will understand why you are not there for their birthdays. Sometimes you have to ‘do what you have to do’ and I’m certain that your father will appreciate you being there with him.
I know it’s hard being far away from him during his illness, but try to keep in touch via phone, or the internet as much as possible. My husband also has CC and I just got him a laptop so he can keep in touch with the outside world even when he can’t personally get to where he wants to be. It is amazing how much he cruises around!
I’ve added your dad to my prayer list.
Go with God and KEEP KICKIN’ THAT cancer.
Hugs,
MargaretWelcome Mother25! To the site that no one really wants to join, myself included! But you will find many friends here that are more than willing to listen to you rant and rave when you feel the need. They will pick you up when you are down. Once joining this site you will soon realize that you are not alone!
How is your dad doing? What stage is he at? Has he had surgery?
I will be sending prayers your dad’s way!
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Julieanne:
So sorry to hear about your husband. And welcome to this site that no one really wants to join. My husband Tom was diagnosed in March 2008. He was able to have a resection where they removed 3/4’s of his liver. He did not have chemo after the resection. In Nov. ’09 he started turning jaundiced. He now has an inoperable tumor in the remaining right side of his liver. It too involves the arteries. He also underwent the xleoda chemo after 28 rounds of radiation to kill the tumor. His doc’s are unable to get an internal stent into the liver, so he has an external drain with a bag to collect the bile.
We also went to Mayo clinic in rochester. They were unable to help him. In Dec. 09, his then oncologist told him to go home and get his affairs in order, that chemo/radiation would not help him and he had 6 months at the most.
So here we are 15 months later (remember that no one has an expiration date stamped on their butt!) and he is still here with me. He went though the radiation, then the oral chemo…after a ctscan, the radiologist ‘thought’ he saw a mass in the pelvic region, so they installed a port and he underwent about 5 rounds of iv chemo, Gem/Cis and within 4 weeks the ‘mass’ was gone. We no longer think it was a mass or even cancer. He has not had chemo in over 2 months and to date all of his numbers look pretty good.
You can read more about my husbands journey under my long in name, MLEPP0614 “My husband and Cholangiocarcinoma” and “My husband and Cholangiocarcinoma – Part 2”
Never accept no for an answer, ask what else can be done instead. Seek 2nd, 3rd and 4th opinoins if necessary. Make sure that your hubby’s doc is knowledgable about CC or has resources that he/she can tap into.
If we had listened to my husband’s first onc that told him to go home and die, I know for certain that he would no longer be here. Instead we sought out other medical opinoins. And the fact that he has outlived that 6 months shows what prayers, attitude and good medical care can do!
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
