New member introduction

Hi Jeeyoung,

The most important thing that I have found works for me is to eat often and small portions. Prior and through original diagnosis I had lost 50+ pounds. I am now maintaining my weight and have not lost any more in many months. I do the carnation instant breakfast as I do not like the boost or ensure but some people like those. The vanilla instant breakfast are my favorite. I also often have pudding, chocolate, vanilla, butterscotch. She will find she needs to stick to food that is easy to digest. Stay away from corn and nuts, even popcorn can cause issues. Calories are as important as nutrition so I also eat candy such as chocolate and chewy candy. These are small and easy to digest and give you calorie intake. I graze on fruit such as blueberries. I am not a candidate for chemo or radiation due to the weight loss and am inoperable because of the vast spread throughout the liver. My quality of life is very good. I have my pain management under control now and feel great most days. I am palliative but stay at home. We have 2 children at home. They both work so some days I am home alone but if help is needed I have a huge network of friends that can be here on a moments notice.

Ginger….a warm “welcome back.” I so much wish for this site to have been of more help when you desperately needed it. As Lainy has mentioned, many more wonderful people have joined us. Additionally, dear Ginger, there has been some progress made in re: to acceleration of research of this disease. The UK Gem/Cis study not only set a standard of treatment for this cancer, it also triggered multiple, large phase III studies; radiation treatments have taken on a greater role for our patient community and we are witnessing more aggressive surgery procedures. The gracious members of this site share their thoughts and experiences therefore, we also notice a greater knowledge base within our community. Although, much more has to be accomplished, indeed we are in an upward trend in combating this rare cancer. It is comforting to know that you have also benefitted from these developments.
My heart is with you and with your beautiful grandchild. The gift of having each other makes life joyful and rewarding in a way never imagined.
Hugs,
Marion

Hello,
My Name is Ginger and I am and was a caregiver to my daughter. She was diagnosised with Hepatocellura Choclangiocarcinoma in 2010. She passed away in January 2012. this is not my first experience with this foundation, in my despriation to find help for her I found this site, It has changed and is more informative for patient and caregivers. I had a lot of questions, very few answers. With this web site recently I have found more information to help me learn and understand what took my childs life. This is a good thing for me and others that are in this situation. Now I can move forward and continue to raise her baby, continue to assist in finding a cure or just research on this disease. Thank you! The information I found on this site has help lessen the pain I felt in not knowing what to do, how to help her. and except our loss.

Hi Jeeyoung,

I would like to welcome you to this site and let you know that I am sorry to hear about your Mom. I would say like so many others have said, you should make sure the facility you visit for your Mom’s care is very well versed in caring for people with CC. We travel over 3 hours so that my daughter can have great care at a great facility. I have found that I could not handle the pain of having a daughter with cancer, so I sought help and take antidepressants. They help me to be able to stay in control of my emotions and not cry all the time. I couldn’t imagine how I would be without their help. I am not advocating them at all, but they are a true lifesaver for me. The most important advice I could give is to remain strong and hopeful. My daughter was first diagnosed and told she was not resectable. Her chemo was called palliative. 17 months later, she is having surgery next Tuesday and we are all so hopeful. So things can change, and sometimes for the better. I am hoping for the best for your Mom.

Love and hugs,
-Pam

Hi Jeeyoung,

Welcome to the site. Sorry that you had to find us all and I’m sorry to hear about your mum as well. But I’m glad that you’ve joined us all here as you have come to the right place for support and help and I just know that you will get tons of both from everyone here!

I can’t help with specific recommendations as to treatment centres for your mum as I am in Scotland, but I so agree with getting her seen by a specialist that has much experience in dealing with patients with CC. I am sure that others who are closer to where your mum is will be able to chip in with some suggestions of where she could be seen.

You are doing the right thing in learning as much as you can about CC and if we can help in any way just ask. The better informed you are the easier it will be in making decisions about stuff that will benefit your mum. Here are a few links about nutrition that may be of help –

http://www.mayoclinic.com/health/cancer/HQ01134

http://www.macmillan.org.uk/Cancerinformation/Livingwithandaftercancer/Eatingwell/Eatingproblems/Poorappetite.aspx

And have you looked at the nutrition board that we have here on the site? You’ll find a lot of great info over there that has been posted by our members.

I hope you keep coming back here and please let us know how things go for your mum. We are here for you and we care.

My best wishes to you and your mum,

Gavin

Dear Jeeyoung. First and foremost is that Mom MUST be seen by a Hospital and ONC who have treated CC before. It is of the utmost importance to be somewhere CC is treated often! UCSD would be great! I know this is hard but there comes a time in our lives, I too am 72, when we are not in a position to make these decisions and our family has to step in. I cannot say enough how important it is to get her to another treatment place. It is hard to start telling parents what to do, I know first hand, but if she is to have any chance at all it would be a good choice to just even get a second opinion at UCSD and then down the road you will never look back a regret not doing it. Yes, you will need to talk to her ONC about her appetite, there are things she can take. Have a safe trip and let me know what happens and anytime you want to meet just let me know that too.

Welcome, Welcome, Jeeyoung, I live in Gilbert! Know that you have come to the best place there is to learn, and take part in the Care of a CC Member. We are a curious group and so may I ask who your Mom’s ONC is and where she is being treated.
I have a good suggestion for nutrition. My husband loved the Carnation Instant Breakfast, Vanilla, and I would blend in a banana. If Mom doesn’t feel like eating, this shake can take the place of a full meal and can be taken 3X a day. The other hint is that instead of full meals have her “graze” all day even eating small bits but all day. I would be happy to meet up with you, if you like to talk. Know that you are not alone as thee are many caring and loving people on this Board. Please do keep us updated as we truly care.
P.S. I would tell the ONC about the indegestion as there are many things to relieve that.