1

(20 replies, posted in Introductions!)

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.

Hugs,
Margaret

If you are a Facebook user, there is a site that you can find a ton of information on Vietnan Vets - search for
Vietnam Vets and Cholangiocarcinoma or Bile Duct Cancer

I hope this information is useful to anyone on this site!

Margaret

Aww Lainey -  I could only watch part of Teddy singing - and thought "Gosh he looks so much like Tom" and could not watch it anymore.  And the tears started.  I'm happy that you have that video for yourself!

I have a few video's of Tom when we did our fishing trips to Canada and I have watched bits and pieces of them, but again, start crying so I'll save them for a later time.

Love and hugs,
Margaret

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

LisaAnn:

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.

Hugs,
Margaret

6

(3 replies, posted in General Discussion)

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

7

(16 replies, posted in In Remembrance)

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,
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

9

(6 replies, posted in Introductions!)

mmking;

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.
Hugs,
Margaret

10

(13 replies, posted in General Discussion)

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

Julia:  There is another angel in heaven.
Hugs,
Margaret

12

(10 replies, posted in In Remembrance)

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

13

(5 replies, posted in General Discussion)

Amy: 

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.

Hugs,
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

15

(5 replies, posted in General Discussion)

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.

Good luck,
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

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,
Margaret

18

(8 replies, posted in General Discussion)

Prayers heading your way.  Best of luck to you.
Hugs,
Margaret

19

(6 replies, posted in Introductions!)

Nicki:  Welcome!  You will find a lot of support from the people on this site.  We are a very caring group of people and will give you as much support as you need with issues.  A lot of us have a lot of personal experience having traveled the journey that you and Chris are now traveling.

Once they are able to get Chris onto the correct antibotics to clear up the sepsis he should be getting stronger.  My husband Tom experienced many bouts with severe infections/sepsis of the liver.  Although he hated having to be on antibotics 6 - 8 weeks at a time, it was in his best interests.  There were many times that I felt he would not 'pull out of it' but antibotics can do wonderful things.

Having said that, surgery, Nanoknife etc may not always be an option.  It depends upon the placement of the tumor.  If the tumor involves the hepatic artery then surgery is NOT an option.  Simply too dangerous.  When my husband Tom re-occured his tumor was wrapped around the hepatic artery therefore surgery wasn't an option.  He did go through radiation and chemo for that tumor.  You may want to discuss the option of radiation with Chris' doctors.

Hope this helps.  My thoughts and prayers are with you and Chris.
Go with God, and KEEP KICKIN' THAT cancer.

Margaret

20

(17 replies, posted in Introductions!)

It really pays to know the doctor's well when your body is experiencing issues. I had my liver ultrasound this morning at 9am.

I ran into Tracy, one of the nurses that works w/Dr. Dempsey - he was the one that did all of Tom's Tube exchanges....as soon as Tracy told him that I'd been in for a Liver Ultrasound, he went to check it out and compared it to a CTScan that I'd had done some years before...he told Tracy to give me a call (He had another surgery coming up or he would have called me himself) and let me know that he could not see anything that had changed from the previous scan and everything looked totally normal.

He wanted to put my mind at ease as he knew that I'd be worried!

AWESOME Customer Service and it also shows that Dr. Dempsey is one heck of a doctor! Now I just have to wait for the blood work - they are checking for hepatitis, etc. I know that will take a bit longer. But so far, I am relieved that it appears to be nothing so far! Finger and Toes still crossed!

I will let you know more after I get the blood test results back!

Hugs,
Margaret

21

(16 replies, posted in Introductions!)

I am so sorry to hear of your loss of your father in law.  My thoughts and prayers are with you and your family.

Hugs,
Margaret

22

(4 replies, posted in Insurance)

Jtoro:

The first thing that you have to do is get a copy of the insurance denial letter.  Most insurance companies also will send a courtsey denial letter to the patient as well.

You physician can ask for a peer to peer review with the regional medical director of your insurance company.  Once that happens, many times the insurance company will then authorize the medication.

You can also appeal the denial, but your doctor or your doctor's physician will/should know how to appeal the denial of the medication.

I would advise you to obtain a copy of the denial letter, speak to your doctor or your doctors assistant and request them to appeal the denial or to ask for a peer to peer review.  Your insurance company should also have a Medical Intake Team that may be responsible for denying the medication. 

You can also call your insurance company and ask why it was denied and what you or your doctor have to do to appeal the denial.

Let me know if you have any further questions.

Margaret

23

(8 replies, posted in Members' Cafe)

Surgery went well.  Knee all fixed up but range of motion is basically gone.  I have a total of 6 exercises to do, one of them I have to do 100 times a day!  It's no wonder they give you time off work!  And there wasn't a chunk of bone it was like a fatty tumor in the knee.  I'm sure they sent it off to pathology.  Now I have to work on bending the knee until I can bend it just like the other knee and work on getting it entirely straight.

Bad thing is that I've gone over 8 months with the knee like this so it will take sometime to retrain my muscles.  The signal from the brain is not getting to the knee because of the pain...my body protecting itself from pain!

I'll do my exercises.  Using a walker right now as it's pretty unstable right now and I don't need to fall and cause more damage to the knee.

One issue down and one more to go.  Ultrasound on the liver next tuesday.

Love and hugs to everyone,
Margaret

24

(17 replies, posted in General Discussion)

Gavin:

Tom did the same thing.  He passed on a sunday but on Saturday he was alert and talking.  His daughter and her husband were here, putting the lights on the two Christmas trees.  He wanted two trees last year, one on each side of the fireplace.  He neve got to see them decorated, but he did get to see them with the lights on.  That surge of energy lasted most of the day and he was very alert.

The next day was a complete turn around, and as the day progressed I kne hat the end was near.  He passed about 3 hours after my daughter Kathie and her husband Kent and their two children arrived.  On Saturday he commented, "I can't go yet, I haven't see Kathie, Kent, Kaylah and Kole".   he was in a coma like state but I really believe that he knew that they had arrived and that it was OK for him to go to his eternal rest.  He knew that I was not alone.

Margaret

Boost Plus is also an excellent supplement for those necessary calories.  A bit pricey but very good if a person is unable to eat.  The cancer center can give you samples and coupons!  My husband Tom used to get 6 packs of the Boost Plus from his cancer center as well as coupons.

Some days that is all he could tolerate.  Snacking is also good, things with hight protein, peanut butter is a great one and most people like peanut butter!  Unless they are allergic to peanuts.  Hard boiled eggs, crackers and cheese.

Even it your mom is 'not eating' it is Okay.  She will eat eventually, when she is able too.  Ice Cream is good...and when Mom requests something try to get it for her.

Hugs,
Margaret