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Hi Dana! I have been MIA for some time now but have decided that I must come back and give my insights to people on this board.
My husband passed away from CC almost 2 years ago.
I would be happy to answer any questions to the best of my ability.
MargaretJune 19, 2012 at 11:04 am in reply to: Through my husband, i join this very scary world of cholangiocarcinom #61433
A bit late in chiming in, but better late than never. My husband was 61 when he was diagnosed. He was able to have a resection and they got all the cancer. 18 months later he turned yellow, went onto radiation, then chemo. Sadly he lost the battle on 11/20/11. It will be 7 months tomorrow that he left this earth.
My advice would be to live in the moment, build those memories and get lots of pictures – spend time with family.
My heart goes out to you.
Prayers coming your way.
Welcome to the best site that no one really wants to join! From what I have read thus far on your post it does not sound like CC, but I am not a doctor – and you just have to trust the doctors and the test results.
It could be possible that the gall bladder was causing the issue – time will tell.
But having said that, knowing that CC is such a monster, no case is exactly the same. I would ensure that your dad continue seeing his doctors and even get his records to some other facility/doctor to have everything reviewed and see if their conclusion is the same.
I hope it is NOT CC as that would be the best case scenario.
Your doctor can also request a ‘peer to peer’ review with the regional medical director of your insurance company.
Also they can and should submit any supporting documentation that the drug is helpful in pancreatic / gallbladder / kidney or liver cancer. Keep pestering the doctor’s office to get in contact with your insurance company.
The reason they most often deny is because of the huge expense of these types of drugs. You can also appeal the denial yourself, however it’s best if your doctor’s office does the appeal and if necessary a peer to peer review.
It can be done and most often it’s possible to get the drug approved. Hang in there! Keep us posted.
To Jim’s Family:
He will be missed. So sorry to hear that he has lost his battle w/CC. He has other’s that will be awaiting his arrival, and will show him the way into his eternal life.
Love and Hugs,
mmking: CA19-9 markers can elevate for ANY reason! They can go up because of an infection, getting a stent placed, getting an external drain tube exchanged. I would not focus on those markers, instead rely on how your mom is feeling from day to day.
There are things to watch for: More yellowing of the eyes or skin, vomiting, being more sleepy than before, irrational thoughts or behaviors, fever, stools with no color, etc. These can all be signs of something going on.
Welcome to the site that no one really wants to join, but now that you are here you will find a lot of encouragement and people will respond to your questions. Feel free to rant, rave, cry, and post your feelings and concerns about your mom. We will become a part of your family and you and your mom will become a part of our family!
I hope your mom keeps digging in the dirt with her trowel! My husband Tom passed away from CC just under 7 months ago, and I find myself digging in his flower beds and replanting his garden…and that has been very comforting to me. Not a day goes by that I don’t think about him.
Build those memories with your mom, take lots of pictures. Sit and talk with her and spend as much time with her as you can. You will never regret those moments.
Go with God.
My husband Tom did not tolerate the 5-FU well at all, and after 3 treatments they discontinued it.
Sadly, he passed away on 11/20/2011.
Hope all goes well for your son.
Julia: There is another angel in heaven.
Please accept my condolences on the loss of your mom. Keep her alive in your hearts and memories. Those memories will live in your heart forever.
For my husband his doctor put him on a water pill, compression stockings and I gave him daily foot massages starting at his toes and gently compressing and forcing the fluid up past his calves. I know it gave him relief from the pain caused by the swelling. And he kept his feet elevated a lot of the time as well. If possible, walking will also relieve some of the pressure.
I’m sure your mom’s doctors are aware of her feet swelling, but if not, make sure you let them know.
My heart goes out to you. I’ve been where you are now and know full well what you are going through.
Love and Prayers heading your way. Peace to you and Pete.
It could also be Ascites (fluid buildup in the abdomen) which they can drain via a parenthesis procedure if they can find a large enough pocket of fluid. It’s a quick easy procedure due via a ultrasound. Small puncture wound in the lower (almost groin) area.
My husband Tom had 2 external drains for 7 1/2 months after his surgery (resection). 18 months later when he started turning yellow, they put in another external drain to drain off the excess bile that was backing up in his system. The interventional radiologist will determine which bile duct would be the best to target. Tom had had the gravity feed drain bag. It required a flush and a bandage change every day and I had to clean the wound area. He did get a few infections, but they were always able to be cleared up fairly quickly with the right antibotics.
Tom was lucky in the respect that although his bilirubin levels were VERY high, he never experienced any of the itching with it. The reason that we decided to go with the external drain is that they could not get a stent interlized because of the location of the tumor and without the drain, his bilirubin levels would continue to climb and eventually that would compromise his entire system.
Tom had that tube for over 2 years until he passed away from kidney failure on 11/20/2011. I would again opt for the external drain as it allowed Tom to go out into public without having people stare at him because of his color.
In order to Tom to avoide infections from the external drain tube he eventually had to go on a 4 week schedule for his drain tube exchanges.
Hope this information is of some help.
Pam: All Lauren has to do is to go to the online DMV site and download the form. Her doctor has to fill it out and sign it. Then take it down to your local DMV (Or mail it) and she should have her ‘handicapped’ placard within a few weeks if not immediately!
And you do ‘not’ have to be disabled per say, just have a condition that makes it hard for you to walk. Tom got his before he was diagnosed with CC and got his placard because of neuropathy in his legs.
Hope this helps,