mlepp0416

Brenda:

Welcome to your new family. You will find a lot of support from members of this site. Feel free to ask any questions, rant and rave, cry, laugh, etc. We are a very great group of people. Many of us have been through a lot with our loved ones and have a lot of knowledge about CC that we have gained through personal experiences, trial and error, etc. We love to share information that we have gained!

My thoughts and prayers are with you and your family. Be sure to ask a lot of questions, make sure your husband’s doctors have experience with CC. Take a recorder along with you when you go to doctor’s appts, etc. Because then you can play it back and re-listen to it. Write down your questions and make sure that you get answers to them, or if the doctor cannot answer them, then request that he find the answer! Don’t be afraid to question things that they are doing. The more informed you are the better! Never take no for an answer, make them think outside the box.

Hugs,
Margaret

Grover:
Glad that they finally seemed to have figured out the best way to resolve your issues! Best of luck and KEEP ON KICKIN’ THAT cancer.

Hugs,
Margaret

Amy:

I’m so saddened by this as I know you were hoping for a much different outcome. I agree with the others, take whatever time you have left and make it memorable. Take lots of pictures and just enjoy being with your mom.

Hugs,
Margaret

Cindy:

My husband Tom was classified as non-service connected disabled and was able to get a pension from the VA for about 16 years. His pension was $985.00 a month and all of his medical care that he received from the VA was free. He did not even have to pay a copay for his meds – most of which came from the VA.

Has your husband checked in with the local VA to file for any type of disability, service or non service? If he has not done so already, please do it. They may be able to get him classified as disabled and he may be able to get a non-service disabilty pension along with medical care.

Tom and I did switch to civilian doctors but his initial surgery and a lot of his follow up care was with the VA – as much as possible but for radiation and chemo we did it locally because of the travel time to/from a VA facility.

One of the nice things about using a VA facility – generally if your insurance does not cover their charges, the VA does not bill the Veteran. Also you can check if the VA is in or out of network with your insurance. The VA is trying to become in network with most insurance companies as they are now billing private insurances. Shortly before Tom passed, they became participating with our private insurance.

We also filed a claim with the VA for Tom’s CC, but it was declined. I have not yet appealed the decision because I have been dealing with Tom’s death, etc. but I do plan on appealing it. It is very hard to prove, their standard “You did not have any symptoms upon discharge from the service or during the service, and you were a smoker” therefore the claim is denied is pretty standard.

Good luck,
Margaret

Lainy: I have to respond to your last post. When they ‘killed’ Tom’s tumor that was ‘blocking’ the bile duct, the radiation also apparently destroyed that bile duct so that is why they could not get a stent internalized. Bile ducts can also become ‘restricted’ or ‘narrowed’ which would cause the bili level to climb as the bile is not flowing through that restricted bile duct. Many times a tumor can completely block a bile duct which would also cause the bili level to climb.

Scar tissue can also ‘block’ a bile duct. Scar tissue from a ‘dead’ tumor, or scar tissue from a surgery. All of these things can result in a person’s bili level to climb.

Additionally there are a whole host of other things that can cause the bili levels to climb. Even a tube exchange will call the bili level to rise, or an infection in the liver.

Don’t want to step on anyone’s toes, but just had to chime in on this one.
Hugs,
Margaret

Amy:

You have a huge family now! I consider everyone on this site as part of my family, even though I’ve never ‘met’ anyone of them in person. This site was a lifesaver to me when my husband Tom was diagnosed with this cancer in 2008.

During his journey with CC we hit many bumps in the road as well as twists and turns. He too lost a lot of weight. Tom’s journey ended on 11/20/2011 and he is at peace now. We never gave up the fight and always hoped that he would beat it. Throughout it all, he never worried about himself, he just worried about others.

Keep in mind that your husband needs calories now, more than ever. Get whole milk, peanut butter, high fat content foods, etc. Also, Boost Plus is very good and if he can’t eat ‘food’ he will most likely be able to drink the Boost Plus and that is just like a meal. He needs to keep his weight so that his body can help fight the CC.

I’m very glad you found this site, but at the same time so sorry that you had to find it.

Hugs,
Margaret

shlamoney:

I think that the loss of appetite goes along with the chemo. My husband Tom had the same issue. He did drink lots and lots of Boost, 1 bottle of Boost has as much calories as a full meal. He did use the Boost Plus as it has even extra calories. This will help you maintain your weight.

Little meals or snacks (High Calories) is a good thing. The more calories you take in the better it will be. Tom, for a long time, could not stomach the taste or smell of eggs…but that eventually went away. He did suffer from chemo brain and called ‘Boost’ Bounce! Everytime he asked for a Bounce I had to think about what he was talking about! Drink whole milk (for the calories) and basically anything with high protein and high calories!

You need to rest as much as possible, but also get up and move. With Spring just around the corner, hopefully you can get outside.

Love and Hugs!
Margaret