Dear Hopeful...
I can ditto that, life is unfair and I can't begin to tell you how this horrible disease had robbed us of the most amazing person that had ever lived on this earth, and that's my husband Jerry, who was taken away from me at the age of 49 from CC.  I don't wanna be negative but just have an open mind and try to think about the good things in life, like the precious days you spend with your mom and still enjoying those days and some more days to come...I have you in my prayers...

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(3 replies, posted in General Discussion)

Hello Carolyn,

I know how you feel and I can relate to every word coming from you that you wish you could have done more, I too wish I could have.  My husband just passed away last July, 2011 and I am still in shock and can't believe that he's gone.  I am in total denial and always feel that life is not fair, but again I have to move on because of the two beautiful girls he left me which always reminds me of him everytime I see their faces and hear their voices.  We have to find a cure for CC, as to when, I don't know...I feel helpless and I don't know who to blame...I miss him so terribly that it hurts.  I miss his unconditional love, his touch, his company...it is not fair, not fair at all!

Katie, Gavin is right, please just ask for the best pain meds you can give your mom.

I understand your frustrations and the pain you feel looking at your husband everyday and wondering what happened to that once very energetic and healthy person turned into a helpless no appetite and losing weight guy. My husband "is" exactly like that (I still can't afford to describe him in past tense), and it breaks my heart so I know how you feel.  He was diagnosed of the same intrahepatic cc w/ mets last March 18th, 2011 and he was taken away from me last July 8th and I am still mad and I can't tell you how I feel about chemo at that stage.  I do discouraged it so very much because of what my hubby have to endure when they put him on cis/gems and clinical trial pill; and of course after biliary ducts stents and all those nasty stuff they recommend like biopsies that I think just worsen their situation.  Please understand the quality of his life is what you need to focus now not the quantity...he will be better off with pain meds and this is just my experience and my own opinion.  I hope you can find comfort that you are not alone and we've been on that road before...be strong and spend more time precious time with him and give him your utmost love...I'm including you in my prayers....         Connie who lost my beloved Jerry from CC...

Lainy, thanks for a very comforting poem...I still remember how a pretty lady you are and how you cried about Teddy and now I can relate to it, I cried about Jerry because I lost my bestfriend, my love and my life.  Jerry had influenced a lot of people that on his funeral everyone who loved and knew him showed up and paid their last respect and I can literally see big men crying out loud to have lost a very dear friend, co-worker and an amazing, incredible man...I miss him every second of my life...And Pam thanks as well..

My beloved Jerry died bravely last July 8th, 2011 fighting this horrible disease.  He's only 49 and I discouraged chemo on any stage 4 CC, it's useless, it's horrible and painful and I'm not even sure if the doctors have a thorough knowledge of this disease, they seem to have made my husband a guinea pig for a month...I can't believe how mad I am at the medical side of CC, I am sorry to be very ill-mannered about all these but I wish I could turn back the hands of time and said no to chemo and have my one and only Jerry died naturally of the pain this disease had caused all our family esp. my kids.  -Jerry was diagnosed March 18th and died July 8th; the love of my life was taken away from me because of this evil cancer, so I pray someday they can find a cure, a real cure, to help save people like Jerry who is I know the most precious and the greatest creature God has ever made.

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(11 replies, posted in Introductions!)

Hello Aimee, my husband also has stage 4 CC and being seen and treated here at the Mayo Clinic in Arizona.   We're just in awe and amazed of the professionalism and thorough care that my husband is getting from the Mayo Clinic.  You seem to be in good care.  He is currently on gemzar and cisplatin chemo doses and also he's on clinical trial which is taken orally 3 times a week.  If you have any questions or concern, please don't hesitate to ask because we've been thru a lot before we seek treatment in AZ.
You have to be strong for your 2 beautiful kids and I am including you in my prayers.            Connie

Dear Tori,
My husband has stage 4 CC and just last 2wks ago have 2 stents placed to open up his bile duct to help drain bile from his liver to his small intestines and he never have fever at all, as a matter of fact it help rid of his jaundice.  You need to let your doctor know about the fever it sounds like an infection of some sort. I hope this helps.  Goodluck and take care....

Hi Linda, sorry to start chatting with you under this circumstance but  my husband is in stage 4 CC too and his has spread on his liver and stomach but we are fighting this and hope to start his treatment next week.  I do also have the bracelets and wearing it everyday till we defeat this.  How old is your dad?  Where are you? 
I will include you in our prayers and stay strong and positive; it's the attitude that makes a big difference.  It seems like everyone at this discussion board are very friendly and supportive; we're so lucky to have this website.  Pls. do update us soon.  God bless.

Thanks Nancy...we will defeat this disease somehow, we need to start now.  I will definitely post our experiences once we get to that treatment stage.  Your comments are greatly appreciated and I'm so sorry about your loss.        Connie

nur1954 wrote:

Connie - All the things you are feeling right now are very normal under the circumstances. Please come by often for support and answers to questions.  We are a great website for venting and screaming, when necessary!  All our thoughts are with you and your husband.....Nancy

Hi Marion, we are going to MUSC Hollings Cancer Center tomorrow for that 2nd opinion and we should start weighing all our options once we get to see the Oncologist.  We have very good support from my husband's work and also a very strong family support as well...lots of love and prayers.  We have 4 kids, 2 college graduates, a 19yr old and a 16yr old in hs. 
Thx for taking your time to comfort us. --- I'm wearing the cc bracelet that I ordered from the foundation and giving it to all my friends and family to start supporting the foundation for more research and cure for cc just as much as we support the Breast cancer cause.
'Will keep everyone posted and Peony thanks for your concern and I'll keep your husband in my prayers as well...keep me posted with regards to his treatment.  Good luck and God bless!

Hello Marion...we are in Charleston, SC.  The doctor said the tumor is inoperable, no liver resection was mentioned and his cancer spread to his stomach and parts of the lymph nodes and yes radiotherapy has been ruled out, he only mention chemo as the only treatment; that's why we are working on getting a second opinion to make sure we have all our t's crossed and i's dotted.  Thanks for your concern and i'll be glad to update everyone after his first treatment or while he's on treatment so we can gather more info regarding this horrible disease.

I'll be glad to talk to anybody re:CC since I am still in a state of shock and disbelief.  My husband is a good man and can't even hurt a fly and I love him so very much that it's tearing me apart just to think about CC in his body.

Thanks to both your insight, my husband wish to talk to another doctor and I think we're still in the ballpark of darn if you do or darn if you don't...he was scared of chemo at first, but due to his age (49 yrs old) we are definitely fighting this.  I will update you guys as soon as he starts treatment.  Please help pray for us because I do believe in prayers...
I'm very upset, lonely, confused and desperate....Connie

My husband was supposed to be treated on March 31 but we delayed chemo treatment due to our decision to get a second opinion and he will be scheduled to see another Oncologist on April 6th.  Would that make a difference if his treatment is delayed for another week or so?  Any valuable information please...

Connie

How's Herb doing?  It's been one year and 2 months after he's been diagnosed, so he's beating the odds, what an inspiring ordeal.  How did he brave that chemo side effects and other unfriendly stuff that goes with it?

cldymond wrote:

Miles:
We are in Calgary as well. Herb was told in Feb of 2010 that he should go home and "get his affairs in order". That was by a surgeon who was unable to operate due to the extensive spread of CC. Herb has Stage 4 Klatskins carcinoma with spread throughout the liver, gallbladder and spots in his lung. Thanks to a wonderful oncologist (who told us "there is probably no cure but with Chemo and other measures (ie bile duct drain - etc) we should be able to buy you some valuable, quality time".  Herb has 2 external drains (one in the bile duct and 1 in the gallbladder and also a stent. He has been through 1 round (8 x 3wk round of Gemcitibine and Cysplatin - 2wks of chemo - one off). Although Herb has way less energy, has lost weight and is now on Fentanyl patches for pain (which keep pain well controlled but not "dopey", he is, as he says "Doing great". His last few scans have shown no progression of the disease, which to us is great news. No-one can tell you how long you have and if they do ...Don't trust them"  Our family has adopted the attitude  - Herb is not dying of cancer...he is living with cancer and we are all enjoying every moment. We no longer worry about "how much time is left", instead we realize how blessed we are to have been given the opportunity to "Live like we are dying" all together. If you ever feel the need to talk to someone ...feel free to e-mail.
Cheryl

Hi Miles, my husband was diagnosed with stage 4 CC and start chemo by the 2nd week of April.  If there's still a chemo treatment for stage 4, I believe thru the grace of Lord we can defeat this.  I'm religious and I believe in prayers, please keep the faith and never lose hope.  I'll include you in my prayers and so as other CC patients.  Take care and God bless.

My husband was diagnosed with CC last March 18th and he's supposed to start chemo on March 31 but we canceled since we're seeing another doctor for a second opinion.  Are we doing the right thing?  Would delaying his chemo for a week make a big difference?