Ask away!  In March 2008 a surgeon in Seattle attempted a resection of the tumor or partial resection of the liver.  Unfortunately, the tumor was wrapped around the inferior vena cava, so it was considered inoperable. 

I am now in hospice care, and it is a good thing. I get bi-weekly visits from a massage therapist, nurse, and social worker.  They are very helpful to see to my needs.  I'm still living at home with my adult children, so they can help out where needed.  Really, life goes on and I feel the same.  Except tired and swollen.  I just don't like my puffy face from the steriods!  Today I got a hair trim to even up the flyaway strands.  I'm going to try a little mousse to see what happens smile

Hi all - well I am still alive and kicking.  I was diagnosed August 15, 2007.  Everyone is stunned that I've been fighting this cancer for four years now.  All I can say is that God isn't done with me yet.  I continue in reasonably good health, although I do get tired easily. 

There is Hope! 

Love to all,
Lisa

3

(15 replies, posted in In Remembrance)

I just learned about Marc's passing.  I am so very sorry for your loss.  I feel priviledged to have met you and Marc last September.  What a wonderful couple you made.  May God be with you as you navigate these uncharted waters with the love and support of your friends and family.  As always, Jeff, you are in my prayers.

I'm sorry that I haven't been around lately. Devoncat's passing and a few others (off the top of my head:  Teddy, Rick, Dave) were devastating and I had to take a break.

This coming August will mark four years of survivorship for me.  I know that is not typical and I thank God every day that I am still around.  I have been in Stage 4 for about 2 1/2 years now with mets to the lungs.  The liver has been ok-ish for a while but I'm seeing some negative signs that all is not well in that area.  But since there is nothing I can do about it, I'm just letting it go.

I've been through about a dozen or so different chemo regimens, until my oncologist ran out of tools in his toolbox.  I am currently under hospice care.  Everyone is different with hospice care.  For me, it means that I don't have chemo anymore, and I have a nurse, a social worker, and a massage therapist who visit me every other week.  All meds go through the nurse.  It's been working out ok. 

One thing that I need to remember is that I am ill.  I feel normal and do things, like weeding my backyard, then I collapse from exhaustion.  I need to learn to conserve my energy and be on a more even keel.

Anyway, I am so very grateful that I have had the opportunity to see my youngest graduate from high school, my middle child get married to a wonderful man, and my oldest graduating from college in August.  I have been given the opportunity to be with, support and love my children and my parents.  I've also grown so much spiritually.  I try to see the best in things, and God's hand in all things - whether we understand or not.

I pray every day for a cure, for those of us struggling as patients and caretakers, and the wonderful people behind the cholangiocarcinoma foundation.  Every one of you are doing the best you can.  Thank you all.  God willing, there will be a cure, and soon.

Hey Charlotte, we should meet at the casino.  It's 10 minutes from where I live.  I could use a little angel luck, too! 

Hope you're feeling better.

As many of you know, I have been fighting this disease since August 2007.  We came to the end of our toolkit of possible "cures" for cholangiocarcinoma and started on Taxotere last month.  Well, for me that was the final straw.  My hair fell out, I felt nauseous, and my fingernail beds got sore.  But the hair!  Not the hair!

At any rate, I have been feeling miserable ever since starting Taxotere and I don't want to feel this way anymore.  I want quality over some possible quantity of life.  We know the cancer is spreading but we can't stop it.  So I made the decision to stop curative treatment and begin strictly palliative treatment.  This really isn't a big switch, as I have basically been on palliative treatment for a couple years now.

I talked with a hospice representative and with my family and will start hospice care next week.  I feel it will give me more options in comfort care, like acupuncture, massage therapy, and pain management.  No more dread of going to get chemo treatments!  Who knows, I may even prolong my life more with this sort of treatment.  I don't want to wait until I am miserable every single day.  I want to enjoy the time I have left.  My beautiful daughter is getting married in June and my son is graduating from college in August.  My youngest daughter is finishing up her freshman year in college.  So there are events and people to live for. 

Next week, as part of the palliative care, I may even begin radiation of the lymph nodes around my stomach to reduce the pressure and pain.  That will hopefully help.  It's little things like that which can made a difference in quality of life. 

No one says we have an expiration date and I don't expect to drop dead as soon as I start hospice.  But I know where I am going.  I know that my Heavenly Father is looking after me and will continue to look after my family when I am gone.  It's time to give up control and trust completely in God.  It's time to love and enjoy my family with the time I have left.  It's time to live as best as able one day at a time.

Rick & Cindy touched many of us on this board with their faith and courage.  I know that he is with Jesus now and in a better place.  Deepest condolences and prayers for you Ken and for Cindy and the children.  I know he will live forever in your hearts.  God bless you.

You really do know who your friends and family are. 

At first I felt guilty that I hadn't died quickly enough before they ran out of sympathy.  Then I found friends I hadn't heard or seen from in many years so that was a blessing.  I understand how hard it is to visit someone with a terminal illness. What do you say? as for myself I would rather talk about the other than myself and my boring life  smile

I am so sorry for your loss.  May God bless you and the children and may he be with you in this time of grief.

I agree with those other comments.  This is what has gotten me through the past 3 1/2 years:
God, prayer, church friends and family
Focusing on the positive and choosing the positive every day.
Allowing myself some times of feeling bad, then choosing life once again.
Don't think I'm dying of cancer, I am living with cancer.
If in pain, don't wait and let the pain get worse, take something for it right away so you can function.

My kids (18, 22, 24) have known all along the diagnosis and prognosis.  I keep them updated on every CT scan.  My 18 year old daughter has choosen to fight cancer by being the Captain of a Relay for Life team.
This gives her a concrete sense of doing something positive in the fight for a cure.

I'm so sorry to hear of your loss.  Prayers for Dave, may he rest in peace.  Prayers for your comfort and consolation especially for Mayce.  God bless you.

you sound like Ali Reynolds in one of J.A. Jance's detective novels.  You go, girl!

13

(10 replies, posted in General Discussion)

Great idea! 

My future son in law's birthday is on St. Patrick's Day, too.

14

(14 replies, posted in In Remembrance)

I'm so sorry to hear of Randy's passing but glad that he is in the arms of Jesus and not suffering anymore.  God bless you and your family.

I am so, so sorry to hear this news.  I hope that you will be made more comfortable.  I pray for you and Cindy every day.  May God be with you both and give you strength.

Last week my Dad had a strange growth removed from his chest. They ran the labs on it on Friday and on Saturday his family doctor called us with the news. My Dad has malignant melanoma. We are devastated.

Dad's family doctor is also my G.P.   The doc is going to start to get things rolling on Monday with a full CT scan and other necessary steps.  We are going to see if Dad can see my oncologist as well.  My mom is just crushed.  She has been taking care of me for the past 3 1/2 years and now this.  Mom and Dad have been married 51 years.  Cancer is just horrible.  I can't imagine what Mom would do without Dad.

On Tuesday I already had an appointment for an ERCP, so my daughter will drive me up to the hospital and drive me home because Mom will probably be dealing with Dad's stuff.  This just sucks.  Dad is 73 years old.  I don't know how he will be able to stand chemo.  He is a strong guy, though, still working as a mechanic on his own cars as a hobby. 

I guess now more than ever we need to rely on prayer and our faith in God to do what's right.

In the Civil War, a common imagery of death and afterlife was that of "crossing the river".  Stonewall Jackson's last words were, "Let us go across the river and rest beneath the shade of the trees". 

I think that is a touching sentiment.

Melanie, cc has been financially devastating for me.  I'm a single parent with three kids in college.  I cannot work.  I'm on disability. I had to file for bankruptcy last year and almost lost my house.  I am trying hard just to keep a roof over our heads.  My kids have crappy jobs and can't help financially.  Its hard to deal with cancer at the same time that you're just trying to put food on table.  I hope things work out for you.

This is outrageous.  This confirms my intuition that SBK is in it for the money, and finding a "cure" (oh, I used the word cure, will I be sued?) is not the primary goal.  Big charities like SBK get big money that is used to fund big salaries for the people who work there.  Just because you call yourself a non-profit does not mean you do not personally profit from your charity.  SBK shows little concern for any other cancer research, as this article demonstrates.  They show no concern for victims of other cancers, as I have personally experienced.

What are they going to trademark next?  The color pink?  Shame on them.

I support the American Cancer Society.  Good people doing good work.  Fighting all cancer.  This morning I signed up to be on my daughter's team.  She is a Team Leader and is very involved in the yearly Relay for Life.

20

(21 replies, posted in Introductions!)

Hi Nancy, my daughters and I drove up through Revelstoke and kamped at the KOA near town.  Unbeknownst to us, the KOA was about 100 yards from the huge railroad crossings.  We didn't get a lot of sleep that night!  But the scenery was fantastic.  We went up through to Banff and Jasper, then over to Edmondton and back down through the Crowsnest Pass on our way home.  It was a wonderful vacation, and the last we had altogether before I got sick.

21

(14 replies, posted in General Discussion)

Rick, I pray for you and Cindy every night.  I am sorry that you are feeling down and in pain.  I hope that you will be able to take care of the pain and the other issue that you are facing.  I don't know if this helps, but I have had perionteal mets for about 6 months now and still feel ok with no ascites.  What I mean to say is that the ascites might go away or not effect you too bad.  Hopefully you will be able to have more time feeling better for your self and your family. 

I really believe in the power of prayer.  After 3 1/2 years I have mets to the lungs and perionteum, multiple hospital stays, unnumbered chemo changes,  uncounted stent replacements, and still have very little pain or physical effects aside from fatigue.  I attribute my health to the good Lord and the power of prayer.

22

(134 replies, posted in General Discussion)

Like others, I am grieving for Kris's loss. While I didn't know her in person, I was inspired by her attitude and hope and awed by the love she shared with Hans.  It has been a difficult week for me, knowing we have lost another hero.

23

(22 replies, posted in General Discussion)

I've had cholangiocarcinoma for 3 1/2 years.  In my experience, fevers indicate cholangitis, and cholangitis can cause or be caused by the stents blocking.  Sometimes I take antibiotics right away when I see and feel the symptoms coming on (fever, dark urine) and sometimes the antibiotics work.  Sometimes they don't, and I need a stent replacement ASAP.  Please don't wait to see if your dad gets sicker.  Run, don't walk to the doctor and hospital right away for treatment.  When I wait, I get really sick and am in the hosptial for a week at a time.  You have to nip the infection in the bud, so to speak.


Lately I have noticed symptoms of cholangitis coming on two or three days after chemo.  I think it is because my blood counts are low and I can't fight the burbling infection without the help of antibiotics.  I am going to speak with my oncologist about this on Monday.

I am so sorry for your loss, codergirl.  Sincere condolences go out to you and your family.

25

(134 replies, posted in General Discussion)

I am so sorry to hear the news that we've been dreading.  Kris has been on my thoughts so much.  Her brave spirit, her great love for Hans and her family, have been so inspirational to me.  Rest in peace dear Kris.  And may your family experience confort and consolation at this time of grief.