Topic: New member introduction

Hi!  I've been reading discussion boards for last few weeks since my mom's diagnose of Cholangiocarcinoma in early Feb. 2013.  I thought I would introduce myself and share about my mom's CC.   My mom is 72 years old and was relatively in good health except that she has been feeling tired, not having much appetite, frequent indigestion, etc for some time.  She always suspected that something was up with her stomach.  Her cancer did not show up in her blood work last fall.  her symtoms were getting worse until she was admitted to an urgent care with severe pain in her abdomen early this year. While in the hospital care, they detected a large tumor in her gallbladder in her ultrasound.  Her biopsy and PET scan show large mass in her liver, bile duct, gallbladder, some lymph nodes and metastasis to lung area, etc.  Her surgeon did not recommend resection at this point.  So she is on Gemzar and has had three rounds so far.  She is a tough cookie but I know it is so hard on her.. She has lost weight due to her lack of appetite.  Her oncologist has given her a break for two weeks due to her weight loss and she is trying to eat up to gain more energy and strenghth now.  I'm learning more and more about CC so that I can be a helpful resource to her...  any advise would be greatly appreciated.  Thank you in advance.  Best wishes to all of you.

Re: New member introduction

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.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: New member introduction

Lainy,
Thank you so much for your quick response.  My mom lives in San Diego area so I've been travelling back and fourth past month or so..  She is being treated at Sharp Memorial in her area although I feel that UCSD cancer center might be a better choice... but ultimately it is her decision.  She does feel comfortable with her ONC who has a good reputation but not necessarily a specialist on CC.  As for your suggestions on nutrition, I will share that with her.  I'm heading out to San Diego this weekend so I can start her on that too.  Do you know if there is something she can take to increase her appetite during her chemo treatments?  We may need to ask her ONC.

Thank you so much for your kindness.  It is really nice to know that you are in town... I may want to meet up with you to talk at some point.

Jeeyoung

Re: New member introduction

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.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: New member introduction

Lainy,  that is exactly what I think too.  Thank you for reaffirming my belief.  This is one of the frustrating part that I'm not there and helping her these important decision with her.  I'm going to do my very best to convince her this weekend for a second opinion.  But I think you and I could understand her sense of urgency and desperation to be treated...

Thank you again.

Re: New member introduction

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/Cancerinfor … etite.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

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: New member introduction

Thank you Gavin for your post.  I really appreciate for your response. 

More and more I read about it, the common tread of discussions were the importance of choosing facilities and physicians with specific experience in treating patients with CC... 

Thank you for including the links to nutritional info.  We are fully on board with nutrition.  I bought a copy of "Beating Cancer with Nutrition" by Patrick Quillin for myself and my mom.  It just makes complete sense to us to fortify our body with good nutrition.  I also am a believer that food is medicine. 

I'm thankful that I have this support group to go to when I need words of encouragement, knowledge and information.

Thank you again, Gavin.  I don't know the exact reason how you became a member.  I'm sorry to that you got here.... too.

Re: New member introduction

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

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: New member introduction

welcome Jeeyoung to the site and I am so very sorry to hear about your Mom.  I can only echo the advice of others who have said that getting to a center where doctors have experience with CC is important as are second (and sometimes third and fourth) opinions.

I am a 3 year 3 month survivor of CC so I have some idea what your mother must be feeling.  You sound like a great support for her.

This is definitely the place to get support and information about this cancer so feel free to ask any questions you have or just vent.  We are here for you.

-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: New member introduction

Pamela,
I'm very sorry to hear about your daughter.  It must be so hard... as a mom, I can understand what you are going through.  I think having a loved one being sick and watching them suffer is incredibly difficult and sometimes you feel so helpless... I hope your daughter's surgery goes well and wishing her the best outcome.  Thank you so much for your support and kindness.  I will not give up hope!

Jeeyoung

Re: New member introduction

Randi,
I'm so happy to hear that you are a CC survivor of 3 years ad 3 months!  Congratulations!!!!  If you don't mind my asking, would be able to share your experience?  how did you find out?  what stage were you?  which area/organs were affected? what type of treatments did you receive?  did you have a resection surgery? how many doctors did you seek? etc.. so many questions in my head.  I DO understand that every case is different...  I just want to know some sucessful cases...

Thank you so much for responding to my post.  I really appreciate it.

Jeeyoung

Re: New member introduction

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.

Re: New member introduction

Dear Ginger, welcome again! I am so very sorry about your daughter and how priviliged and precious to be raising her Baby, as your Daughter will never be far away...Mother's really don't leave their children.
Thank you for the accolades and kudos as we have come a long way in the past couple of years. It is due to the wonderful loving and caring people on this Site from all over the World. And when they say they are sending their love, you can just feel it. I am sending my love to you for the wonderfully loving and brave Mother you are. Feel free to visit us anytime and kisses to the Grandbaby.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: New member introduction

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

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: New member introduction

Hi everyone,
I made my introduction about a month ago after reading many posts from afar.  Today I have learned that my mom who was diagnosed with CC almost 3 months ago have done all she could do to fight it.  Now based on her ONC prognosis and Ct scan results, she has decided to stop her chemo treatments and make arrangements in a hospice care.  I'm so heartbroken..  I was hoping for a miracle... I wish it was different..  I have thought about this moment over and over in my head to be prepared but it really doesn't make it any easier.  I know she had a very difficult time with chemo and it has been take a toll on her body as well as her spirit.  It has been really hard to witness these changes... I know that eventually I will accept and come to turns with it but it is excruciatingly difficult.  I just wanted to say that I really appreciate this board for your comforts, care, resources and information.. that I was able to receive.  I will keep you posted as the journey continues...

Jeeyoung

Re: 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.