Hello to all Caregivers ~

So I am not sure if this is the most appropriate place to post this but I recently went to a Mindfulness retreat for work purposes to aid in helping us in the field to become aware of various emotions that may come up due to being a caregiver. Although it was work related, I truly believe that this can be helpful to those of you who are taking care of your loved one day in and out through this journey in Cholangiocarcinoma. 

From first hand caregiver experience with my father, I think that it's important to make sure that our caregivers know that you are cared for.  I have been doing some searches and came across some non research articles that I thought I'd share.

Although a couple of years old and the focus is on caregiving those with dementia, this link is a good read, in my opinion, on mindfulness for the caregivers out there: http://www.mindful.org/when-caregivers-need-healing/

As a summary from the article, just remember:

"Be where you are
- It’s a central principle of mindfulness: trying to do one thing at a time, and knowing that you’re doing it, and doing it with kindness toward yourself.
-make a list of activities that nourish you, and try to build one or more of these into your days: journaling, say, or taking walks outside, calling a supportive friend, taking some time to do yoga, meditating—whatever helps you come back to yourself and the moment you’re in.
"Be gently aware of loss and change
-Caregivers often experience long (or short)-term uncertainty—and this can be very stressful.
"Meet your family member where he or she is
"Seek out support. Ask for help. Share your story.
-Caregiving is isolating; it usually happens in private homes, behind closed doors. Yet connection is vital to us as human beings.
"Be kind but don’t try to be a saint
-Being kind doesn’t always mean feeling kind. It does mean doing the right thing in a particular moment. Of course, trying to feel compassion, having that as an intention, is good—but of course one isn’t going to feel compassion in every moment.

Again, some things apply more than others. I hope that you find a way to take care of you during this time with your loved one.

Many hugs to you all
~ Lourdes


(15 replies, posted in Introductions!)

Hi Vallerina,
I usually am not on the boards but happened to come across your post and it struck a cord in me. First I want to agree with what others have said, you will be inundated with information. I want to highly suggest you use a tape recorder, or digital recorder when you go to the doctor appointments. That also may help your dad process all the information and make the decision that is right for him.

As a caregiver you will want to do all you can for your dad. Remember to try to take time for you to process, and breathe.

Sending you many positive thoughts for this journey.


Not sure if this is the place to post, but in case anyone is interested there is a patient and family-centered care conference in July in New York City. If anyone attends, would love to hear about any insight you may have gained.

Here's the link for it: http://www.ipfcc.org/events/conference.html



(3 replies, posted in Events & Fundraising)

Hello again -
It's been a long time since I come to the discussion boards, but I had a suggestion that maybe someone from the organization may want to try, unless it has already been done.

I'm not sure how many of you know about the Alex and Ani bracelets (I only found out about them as they were a gift to me). What I learned today was that this company supports certain charities and gives a percentage of sales of certain bracelets to designated charities. I saw that they have a form to begin the request process: http://www.alexandani.com/charity-by-design

Also, it seems that they choose the charm if it somehow connected, and I saw that they have a Tree of Life charm; which I found to be representative of the CCA community.

Anyways, this was just a thought.

Wishing you all a beautiful rest of your week, and of course only positive thinking for everyone affected by this.



(0 replies, posted in Members' Cafe)

Hello all,
I'm not sure where to post this, but I know of a group in California that creates comfort packages for individuals affected by cancer. I am not promoting any religious affiliation, but know that they do this in a positive way, really just trying to send comfort through blankets and crochet hats.

If anyone is interested in requesting a comfort package, this is their link: http://yana-cancercomfort.com/

I'm sure there are other groups out there that may offer the same thing, but this was just one that I know of through a friend.

Many positive thoughts for all,

Hello Marion,
I just came across this and thought that I would love to volunteer in some way, but I just don't know in what capacity. Please keep me in mind if you need help with things.

~ Lourdes


(11 replies, posted in Grief Management)

I just read your poem and it was really beautiful. I haven't been around the site for a while and have been missing my dad tremendously recently. Wishing everyone much peace and love in this month of awareness.

~ Lourdes

Thank you so much for sharing this. I save all this info...it's makes me glad when there is research going on especially related to liver flukes (my dad was in Vietnam).

And being from CA with all the things you hear about fish...I pointed it out once at a store when some fish sold there was from Japan after earthquake/tsunami...they said it was ok but shortly after never seen again ~


(6 replies, posted in Members' Cafe)

Thanks for the recommendations. I have yet to see Lincoln, but it looks good.

Brave was one I did see and I thought it was a really good movie smile

Hello Chelsea,
First of all, I am sending out positive thoughts to you and your mom. In case you wanted a little more information on what Marion had mentioned (chemoembolization) here is a link to a post I had placed a while back: http://www.cholangiocarcinoma.org/punbb … 449#p48449

I hope your mom has a wonderful time in Hawaii smile

~ Lourdes


(6 replies, posted in Members' Cafe)

Hello all ~
I just wanted to post something completely non-related since I am watching the Academy Awards tonight, and since I've been a little disconnected, have only really watched maybe 2 or 3 movies at the theaters.

Are there any favorite movies from this past year? what made them so memorable for you?

~ Lourdes


(1 replies, posted in Members' Cafe)

Is it terrible that it's the first thing that comes to mind? I wondered that same thing about Jerry Buss...


(1 replies, posted in Members' Cafe)

Hello everyone ~ I wasn't sure where to post this, but I was wondering if there was going to be anything special happening for February and CC Month?

Wishing everyone a wonderful week,

~ Lourdes


(5 replies, posted in Events & Fundraising)

Thank your responses...I will email Laurie and see if I can obtain any...I will also send a little more info about the event.

It was nice to stop in again and read some of the updates.

Take care,


(5 replies, posted in Events & Fundraising)

I was just wondering if there is a way to order some of the brochures.

There is going to be a Quarter Auction event near me that my sister will attend in attempt to sell the 31 products and bring in more money for the foundation. Since every commission that is received in the sales is going to the foundation (so far $100 and some brought in) we thought it would be a great way to give brochures to folks and let them know about Cholangiocarcinoma and the cause.

I noticed you can download, but I don't have a color printer...so I would absolutely not have a problem purchasing if that's possible. (or if you can tell me how to direct Kinko's people to print the brochures as I'm not that savvy with it).



(9 replies, posted in Members' Cafe)

I just wanted to wish everyone a Happy Veteran's Day. Whether you are a veteran or you know someone who is/was a veteran...thinking of them today and everything that they have done.


It has been a while since I posted...honestly, I didn't want to come on the site after my dad passed. But now I have a strong desire to *do* something and I have decided to join Thirty 31 Gifts, and attempt to raise money by hosting purse parties (kinda like tupperware, but purses/bags instead).

Basically, I am now a Consultant for Thirty 31 Gifts, and every commission I receive from these parties will go to the foundation. If anyone wants to check this out, or if you think family and friends would want to participate in some way...hopefully I can bring in some money to help support research.

Here's the link: http://www.mythirtyone.com/211064/



(10 replies, posted in In Remembrance)

Thank you all for your kind words. I have passed along all of your messages and each one has truly touched our hearts, and is helping us during this time.

If any of you are interested in service information and online tribute about my father this is the information:  http://hosting-19539.tributes.com/show/ … a-93703039


(10 replies, posted in In Remembrance)

Early this morning, after fighting a good fight, my father, Hugo Rocha age 68, passed away to CC. He was a faithful and loyal husband, loving father, and amazing person who touched many people's lives. He served honorably in the US Army Service from 1967 to 1969. Worked as an amazing counselor for adults and students, and always wanted to help in whatever way he could. My family and I have many wonderful memories of him, and will try to keep these memories alive in everything we do.

This is the first time I post his name on the boards as he was a very private person, but I know that during his fight he was always interested in how awareness was brought to what Cholangiocarcinoma is and how it affects a person, and their families.

He will be missed, but know that he is now in a peaceful place where he can just relax.

So my dad went into the hospital again on Monday because of diarrhea and not eating because of the mouth sores. Met with palliative team yesterday and will be starting that once he is released...

I was really irritated with the Family Physician who sat in the meeting, because that's who is on-call, as I felt he was encouraging me to talk to my dad about stopping chemo -- as if to convince him to stop... and I feel that is up to my dad to call the shots, as he is still the one who is in control. Just frustrated and wanted to post because I have felt the support of the CC family.

Still trying to stay hopeful and keeping fingers crossed that today is better.



(2 replies, posted in Adverse Reactions & Side Effects)

Hello everyone ~

My dad had started Xeloda last Saturday, and stopped yesterday due to the severe pain in his throat and tongue. Was prescribed special mouthwash that helps numb the area, crossing fingers that this will be effective as he isn't really eating because of the pain. Drinking Kefir seems to help soothe a bit, so that's been our go-to...

Just wondering if anyone has found anything else that may useful in relieving the pain from stomatitis?



(7 replies, posted in General Discussion)

Dr. Sonnenday - thank you for the link from you interview. I was reading through the criteria, and am wondering since you mentioned that a transplant candidate doesn't have evidence of cancer anywhere else, does that mean that if it looks like other areas have mets, then the individual automatically doesn't qualify to be a candidate?

Sorry if this seems redundant to what you already answered via your link...



(7 replies, posted in General Discussion)

I just wanted to follow-up on things that have happened...dad was released from hospital on Monday and is currently on Lasix and 1200ml fluid restricted diet. He's still exhausted which I know is common with CC, but we continue to go forward with everything that the doctors say (he has now started Xeloda, and still gets Cisplatin).

We had another consult with Liver Specialist, and he says that a transplant is not an option due to my dad having mets in the lung, and 2 tumors in the liver (along w/other nodules)... But I'm wondering if a transplant is ever an option for others? because he says he'd only seen 1 transplant w/CC patient - and that with the liver having only 1 tumor and no mets...

I'm just trying to gain more insight into options, possibilities, etc.

As always, grateful for any insight.


(7 replies, posted in General Discussion)

Hi everyone ~

After becoming worried about my dad's excessive swelling in the feet and abdomen, extreme fatigue and shortness of breath, and I finally convinced him to go to the ER. Luckily they did a paracentesis (we had been waiting for an IR referral), and that helped relieve his discomfort.

He's currently being kept in the hospital...his sodium level is a little low, and they are restricting his fluid intake...has anyone had this happen to them due to CC?

On a side note...if I haven't mentioned it before, I want to just say how grateful I am for the message boards. Having been reading and searching various things, I feel that having a collective of experiences has made me a better advocate for my dad, than if I didn't have this site to go to.

Thank you,


(8 replies, posted in General Discussion)

Marion - No...my dad sees an Oncologist at Kaiser

Thanks everyone for your insight...it had been on my mind and was wondering if that was a standard...good to know that there are other onc's out there that do more than just the questions...