mlepp0416
Forum Replies Created
-
Posts
-
Two more days and they will try to place the internal stent. Prayers requsted that they are successful. Tom continues to loose weight, down to 122 lbs. I’m not ready to face that he may need hospice within the next few weeks. I’m not ready to let go. I’m just not ready for any of this, but are any of us?
I feel the need to get angry at somebody or something, but feel it will do no good. We all ask “Why” but don’t get any answers. Somehow it all seems so unfair. I realize that we have to all go to a better place sometime, and find myself hoping that he does not suffer too long with this dreadful cancer.
Sorry I feel like I’m being negative, but also trying to be realistic. How much longer can my wonderful loving vibrant fun loving husband continue to fight this battle when it is ravaging his body?
Please send some prayers his way.
Go with God and you guys KEEP KICKIN’ THAT cancer.
Will post more on Friday after his procedure.
Margaret
Kris:
Go with God and KICK THAT cancer!!!
God bless and prayers coming your way from Wisconsin
Margaret
Cvertz;
So sorry that you have had the occasion to find and join this site. But welcome, and you will find that this site will give you lots of information. You can read my husband’s story under my login name mlepp0416 (My husband and Cholangiocarcinoma)
This is not an easy cancer and the journey it takes you on is full of twists and turns and bumps in the road. Just when you think you have if figured out, it throws another curve.
Kelly is very young to have been diagnosed with this cancer, most people are older when they get diagnosed. My husband was 61 – he is now 63 and still fighting after a liver resection in June 2008. He presented with a new bile duct tumor in Nov ’09.
The best advice that I can give is to research all you can, ask all the questions that you can, seek 2nd opinoins and enjoy each day you have with Kelly.
Go with God and KEEP KICKIN’ THAT cancer.
MargaretLisa:
Exactly what I’m thinking. I think the VA needs to pull it’s head out of it’s A** and start realizing the Cholangiocarcinoma takes years to become an issue!!!Margaret
Jeff:
I think that Marc is just feeling normal feelings after being hit with the shocking news about CC. He probably has a right to develop an ‘attitude’ and complaining about ‘silly’ things maybe comes with the territory.
Tom too (in my eyes as his caretaker) complains about silly things but as a caretaker you have to take a step back and realize that we have not been given a diagnosis of CC and we don’t know exactly what that does to the person with the diagnosis. And although we may think the complaints are silly, to the person that has CC they may be very valid complaints. I sometimes find myself wanting to scream and think come on Tom suck it up a little. Then I have to give myself a mental slap up alongside my head!!! So what if he complains that the smell of my cooking food makes him ill (it probably does) and so what if he complains that the blanket isn’t just right on the chair (smooth it out for him). Because in the end does it really matter?
Marc may also be a little frustrated because he’s been thrown off course, this was not something that was planned out in his life so it’s understandable. He will get back on track fairly quickly and if going back to work helps him to get back on track, then it’s probably good for him.
Take it one day at a time my friend! Things will even out and get better.
Go with God and KEEP KICKIN’ THAT cancer!
Margaret
Janet:
Keep the faith, you can do it! Tom also had a PICC line when he returned home from the hospital. He picked up three different kinds of infections so they had to mix a special cocktail of antibotics for him. Home health care only came out to the house 1x to show me how to care for the picc line and to show me how to administer the antibotics. Pretty easy actually. Tom did not have the open wound but he had the external bile drain bag (started with two of them) so it was a lot of changing of bandages.
Now that he’s back to the external drain bag, I’m back to changing bandages. All in a day’s work. I agree though if he had a large open wound, I’d leave that to the professionals.
Soft bland foods might be best for your dad and easier for him to digest. Cottage cheese, applesauce, soups may be something that you want to try. And BOOST may give him the calories that he needs. Tom is currently getting BOOST Plus as he needs to gain weight, and he loves the chocolate flavor. A six pack runs about $9 here in Wisconsin.
As always, prayers coming your dad’s way from Wisconsin.
Please tell him to KEEP KICKIN’ THAT cancer.
Go with God.
MargaretThanks Gavin, Lainy and Kris! I will have to check out the BRATTY thing, sounds like a good plan! He does take lactobacillis which equals about 10 containers of yogurt to keep the good bacteria going in his digestive tract.
I’m excited because he’s gone a whole week and didn’t loose any more weight and he’s eating much better now!
God Bless!
KEEP KICKIN’ THAT cancer.
MargaretGood news today! Tom’s bilirubin level is now down to 5.9, his tumor markers are also coming down. Almost one week into Chemo (Xeloda) and his doc has backed him off a bit on that. Only 5 pills 1x a day today and tomorrow. Nothing for Sat/Sun. Then back to 5 pills 2x a day the next week then he gets one week off. So far the only side effect that we have noticed is that he had some bowel movement problems so that is why the doc is cutting back a bit.
He is still not gaining weight, but he has not lost anymore either. Boost Plus is helping and now since the kidney stone is gone, he is finally eating MUCH BETTER!!!
Next friday they will be trying to place the internal stent. The doc had to flush the external drain last week and he now can see the contrast going past the tumor and into the intestine. He is very positive that he will now be able to place the internal stent (keeping our fingers crossed as Tom hates the external drain!)
He will also be having his pet scan next week and we’re hoping for something positive!
We are KICKIN’ this cancer in the behind!!!
Go with God and KEEP KICKIN’ THAT cancer
Margaret
Myra:
Welcome to the site, you will find lots of advice on this site. So sorry to hear about your husband. My husband Tom also has CC and went through a liver resection in June ’08. He presented with another tumor, 2.5cm, inoperable in Nov ’09. His original oncologist gave him no hope, told him to go home and die and that chemo and radiation would not help.
We ran to get 2nd and 3rd opinoins. End result he had 28 rounds of radiation and the tumor is shrinking. He started chemo a week ago and next week they will try to place an external stent. He’s had an external bile drain for the past 2 months cause the tumor was completely blocking the bile duct and they could not get through. Now there is bile going through the duct so the doc is pretty positive that they can get the internal stent in.Never give up the fight against CC. Always seek other opinoins, Discuss radiation for your husband. It did help my husband Tom (My husband and Cholangiocarcinoma is his story under my login name mlepp0416)
My husband is 63 years young and prior to his diagnosis he had no symptoms. We don’t have any young children anymore, but we do have lots of grandchildren, the youngest is only 8 months old and is named after his Papa Tom.
Prayers are coming your husband’s way from Wisconsin.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Noll:
Welcome to the best CC site on the internet, and so sorry to hear about your Mom. Although no one wishes to join this site, it has given many people good information and is a comfort to those of us who are caretakers for our loved ones fighting CC.
My husband Tom had his gallbladder removed with his resection and I had my gallbladder removed about 5 years ago. Neither of us ever had to take bile salts. The bile that your liver produces contains a lot of salt and the bile still goes into the intestines even if the gallbladder is removed. It’s one of the body organs that we can live without. The liver will produce bile when you smell food and when you begin to eat. So as long as the bile is getting into the intestines there should not be any need to take any bile salts.
But this would be a question to ask your mom’s doctors. After Tom’s liver resection he developed a bile leak and had a bile drain tube for 7 1/2 months. After his reoccurance of a new tumor (inoperable) his bilirubin level rose to dangerous levels and he now has another external drain tube to drain the excess bile off his system. Even with all that, none of his doctors ever suggested bile salts. He does take Lactobacillus to help with his digestion as that keeps the good bacteria going in his intestional tract. He also drinks a lot of gatoraid which helps with low sodium in the system.
Tom also experiences a lot of Acid Reflux or heartburn and taking smaller meals and eating more often seems to help with that.
Write down all your questions and ask your mom’s doctors about them. Experience shows that if you don’t write them down, you will forget to ask them!
Prayers are coming your mom’s way from Wisconsin.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Jeff:
I can echo what Lainy said. Low sodium levels are something that my husband has experience ever since he started his journey with CC. Pedialyte (UCK don’t know how kids can drink it) or Gatoraid may help with that. Tom drinks tons of Gatoraid and it helped him with his low sodium. His VA doctors recommended it to help with the low sodium levels. He also salts his food to help as well.
Tom also experience the feet and leg swelling while he was inpatient (after his resection surgery) Elevating the feet as much as possible and foot massages help with the pain that the swelling can cause. I’m sure Jeff would love to have you massage his feet! I’ve had to do that many many times for Tom just so he could get some relief. And putting compression stocking on BEFORE Marc gets out of bed also helps! He should be wearing them as much as possible during the day. (We also found out that in Tom’s case vicodin was causing some of the swelling) So if Jeff is using vicodin you may want to ask about getting another form of pain killer and see if the swelling goes down.
As a caregiver myself I can relate to it being hard to focus. You have to worry about Marc, about making sure that things are falling into place with the VA benefits, his medical care, work and on and on.
Somedays it’s just a struggle to remain focused. Let me tell you that there are days when I just want to scream and run away – or just go get a bottle and drink myself silly.
However, take a deep breath, let it out slowly and then begin by starting a list of things that need to be done.
Focus on the most important thing on that list and once that is done grab another and focus on getting that one done and on and on.
Never forget that you as a caregiver also need time for yourself. Even if it’s just walking away for a moment – going outside for a breath of air or to clear your head. Take a bubble bath with a glass of wine, listen to some soft music or go do something silly. You have to remain strong for Jeff. I know it can be hard, I have been doing this for 23 months now and it is do-able!!!
Prayers are still coming Marc’s way.
Go with God and KEEP KICKIN’ THAT cancer
Margaret
Suzanne:
No one can really answer your question, as there is no answer. Your dad will live on in your heart and your wonderful memories that you have. Hold those near and dear to you.
So sorry for your loss. The problem with CC is that so many people are not diagnosed until it is too late. Not a lot of doctors are familiar with CC and there are many doctors who have never had a patient with CC, so when they encounter one, many don’t know how to deal with it.
My husband was one of the lucky ones who was diagnosed fairly early, was able to have a liver resection, but had a reoccurance of a non operable tumor. He is now fighting his battle all over again. No matter how much time our loved ones have, all we can do is to be there for them.
The loss of a parent is very hard, I know as I lost my dad from pancreatic cancer many years ago and lost my mother due to a massive stroke. No matter how a parent dies, it’s never easy. I have learned over time to cherish the memories I have and you will learn to do the same, but it does take time.
Prayers are coming your way from Wisconsin.
Margaret
TJ:
Let me echo the others who have posted before me. Welcome. Come back often and read all you can on this site as it is a wonderful site full of very useful information.
CC is often undectected until the cancer is in the advanced stages. Some people like my husband Tom are diagnosed early because of being on a cholesterol lowering drug. The only reason is that when you are on a Cholesterol lowering drug, they normally test your liver function about every three months.
The journey with CC can have many twists and turns, ups and downs and bumps in the road. You can read my husband’s story under my login name, mlepp0416 (My husband and Cholangiocarnicoma)
Tom is now 63 and for awhile he too did not have any desire to fight this disease, however, that was after his previous oncologist told him that there was nothing they could do. After some soul searching and discussing the options with family members he decided to fight this evil cancer.
Has Radiation been discussed? What type of chemo is your mom on? What type of needles are they using when they try to do blood draws, or start iv’s?
With Tom, his veins are so shot from all the medical procedures that they almost always have to use a ‘butterfly’ needle. And most often when he presents to the ER they already know that they need to call in someone from the IV team to start an IV or do blood draws.Prayers from Wisconsin are coming your mom’s way.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Jeff:
Every veteran can receive health care at a veterans hospital, regardless of their income. If Marc is looking to receive something like vererans disability then income may be taken into consideration, and if he has private health insurance they will submit claims to the private health insurance. Our health insurance paid the VA over $400,000.00 for Tom’s care.
Something is wrong if they are saying that he can’t receive medical care. My Tom is non service connected and he receives disability from the VA. I do know that in recent years they have made some changes to the guidelines for receiving non service connected disability.
Good luck.
Margaret
Jeff:
So sorry to hear about your partner’s diagonosis of CC. Welcome to the best little site on the web and I’m certain that like me, you did not want to ever hear the word Cholangiocarnicoma. In early 2008 I had never heard the word before.
My husband Tom was diagnosed in Mar 2008 and had a liver resection in June 2008. After a long recovery (he had a bile leak) every thing appeared to be going well. We had a great spring, summer and fall of 2009. In Nov 2009 he started to turn yellow. Another reoccurrance of a 2.5 cm tumor in the middle of the remaining biliary tree, involving the hepatic artery, so it is inoperable.
Tom’s bilirubin level started climbing and when the VA oncologist that was assigned to him at the Iron Mountain VA in Iron Mountain Michigain saw his scan, he told him to go home and get his affairs in order. When I questioned about Chemo and/or radiation he said “It would not help”.
We got 2nd and 3rd opinoins and so should Marc! Never take no for an answer! No one has an expiration date stamped on the bottom of their feet (or on their butt).
Tom also did not have any warning signs! The only indication that there was anything wrong was that his liver enzymes were elevated (they were normal three months prior) We are lucky in the respect that I carry private health insurance for Tom and didn’t have to rely on the VA. After six weeks of dealing with the VA docs changing his diet and just checking his blood work, we sought out civilian docs who diagnosed him.
Tom’s liver resection was actually done at the VA hospital in Milwaukee Wi, by Dr. Teresa Quinn – a wonderful Doctor and I would recommend her to any Veteran.
The oncology team at the VA missed the mark as far as I’m concerned, because they said with clean margins he did not have to have any chemo. However all of his new docs are now saying that if he’d had the chemo after surgery he may not have presented with a new inoperable tumor.
After the VA doc told him to go home and get his affairs in order, we got to work KICKIN’ this cancer! We are currently getting treatment at the Vince Lombardi Cancer Center in Green Bay Wisconsin.
Tom’s bilirubin level climbed to an all point high of 24.7 but he did not suffer any of the side effects such as intense itching or brain confusion. His docs are amazed. He underwent 28 radiation treatments and his 2.5cm tumor has now shrunk and most of his bile is now getting to where it needs to be rather than into his external drain bag.
Have they done an ERCP to see if they can stent Marc’s liver? Does he have an external drain to drain off the excess bile (which will bring down his bilirubin level)?
Have radiation treatments been discussed as a way to shrink the tumor? This did work in Tom’s case (YIPEE) Tom just started on chemo yesterday (Xleoda).
Has Marc sought a 2nd opinoin? Does he have health insurance? If so, please get 2nd and 3rd opinoins.
I know the shock that you are going through, been there, done that. As my husband’s caregiver, I know a lot more about this cancer than I ever wanted to know. I’ver been on the roller coaster ride with Tom now for 2 1/2 years and I want to get off, but I also want to be the person that he can count on to always be there for him.
This last ride has taken a toll on his body. You can read more on his story under my login name mlepp0416 (My husband and Cholangiocarcinoma)
The early detection IS very difficult with this disease unless one is on a cholesterol lowering drug. Every one should have their liver function tested and many more cases would be caught early and many more people would have successful outcomes.
Was Marc ever in Vietnam? In any Asian countries? We have been learning that many Vietnam vets are now being diagnosed with CC, but the VA is not willing to consider this cancer as a service connected disability. We need to get that changed and the more veterans that get this cancer and the more that put in for service connection the better it will be.
Go with God, prayers from Wisconsin are coming Marc’s way.
KEEP KICKIN’ THAT cancer.
Margaret
