mlepp0416

Susan:

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.
Margaret

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.

Margaret

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.

Margaret

Eileen:

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.

Margaret

Jeff:

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.

God Bless;
Margaret

Janet:
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.

Margaret

Janet;

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.

Hugs,
Margaret