1

(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 ~

3

(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

5

(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

6

(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...

7

(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

8

(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,
Lourdes

9

(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).

Thanks!
Lourdes

10

(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.

~Lourdes

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/

~Lourdes

12

(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

13

(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.

Lourdes

15

(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?

Thanks!
Lourdes

16

(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...

Lourdes

17

(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.
Lourdes

18

(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,
Lourdes

19

(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...

but, I have been wondering if other folks' Oncologists are "hands-off" so to speak...in that they don't actually physically examine their patients??

21

(5 replies, posted in General Discussion)

So we went to the Oncologist and my dad had an ultrasound to determine if there was any blockage, and they told us there was not. He is scheduled for a CT scan on Monday more so to see what changes have occurred since the last scan a month ago.

No mention of an external drain, and that is very helpful as I will make sure to ask about that possibility.

Our concern is the dramatic jump (4 to 9) in the past two weeks. Trying to stay positive but frustrated because there is nothing that we can do.

Thanks again for your thoughts, and as always wishing everyone the best.

Lourdes

Hi everyone,

My dad has been going through it recently, and over the past couple of months his Bilirubin level has increased dramatically.  I've been looking for natural ways that may assist in lowering the bilirubin and am wondering if anyone has tried anything that has actually worked.

I saw something about Echinacea juice and Goldenseal...any thoughts would be much appreciated.

(PS. Tomorrow we see his Onc. so my plan is also to ask about possible bile duct blockage and stents...)


Lourdes

23

(1 replies, posted in General Discussion)

Hi Cindy,

There's a thread on the boards about Vietnam Vets and CC (I know you mentioned Korea, but this thread has some info).  Sheila Harrison is an advocate for awareness with regards to veterans who served in southeast Asia and now have CC. My dad, who served in Vietnam, contacted her and she was really great with sharing information. Here's the website with her story: http://www.engineersvietnam.com/network … arning.htm

Lourdes

I was also searching for the webinars and stumbled upon the link via the CC twitter page. http://www.cholangiocarcinoma.org/media.htm

Lourdes

25

(5 replies, posted in General Discussion)

Sorry for not responding sooner...just wanted to let you know that according to ENT there was no vocal cord paralysis, just overuse, which was great news. Thanks for the information on possibiilty of neurotoxicity, always helpful to have just in case.

Lourdes