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La fundación de colangiocarcinoma (CCF) ahora ofrece servicios de traducción en Español.
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Posts found: 14
IM GOING TO DISNEY!!!!!!!! soon as i can walk hahaha just kidding
well im on cisplatin and gemzar so far only side effect is swelling in lower body due to retention and fatigue....feel like i cant hold up my own body let alone lift a leg but NO NAUSEA YEHHHHHHHHHHHHHHHHHHH God Bless all P.S. still no radiation
I've recently started to swell in my abdomin area and it is also very difficult to swallow food...I feel really bloated like if it were gas pains but no gas comes out...I do think that maybe I have a hernia which is causing the difficulty swallowing...has anyone else had similar stomach issues? Let me know thanks. Tony
YO GO GURLLLLL! LISA I LUV YOUR ATTITUDE! I TOO HAD AN UNSUCCESSFUL RESECTION SURGERY IN JULY OF '07...was given only 6-8 months to live but I REFUSED TO ACCEPT THAT AND BEEN FIGHTING THIS EVIL DISEASE EVER SINCE!!!!!! I hope you spend a lot of time with your family and yes you are absolutely correct.....God will provide just turn it over to him and you will see miracles right before your eyes! Tony
My advise to you is to keep dreaming and setting goals for the future but be sure to enjoy the present and stay in the now too...the past is the past and we can't change that but I tell you what, dreams of the future has real helped me to keep positive and want to keep fighting to make them a reality.
And to the member who stated: "I am learning to deal with an absense of hopes and dreams and trying to put myself firmly in the present"... Yes the present is a gift from God (present, gift...same meaning) but please don't give up your dreams and hoping of the future. Don't let this evil disease rob you of hope and happiness. One thing that has helped me is to put my life in Gods hands. Every day I say to him let your will be done father. Only He can determine when our time is up on this planet. Don't let anyone assign you an expiration date ok. Of course I am only human and when I am in a lot of pain those negative thoughts always try to creep in but I FIGHT and turn them over to God and trust me I am not a bible thumper or anything like that but try it and you will see that it works. God is real. Talk to him like you talk to your friend or family and you will see...I promise! God Bless to everyone on this site. Tony
Suzanne & friends,
thanks for the replies it looks like my new oncologist is leaning toward the chemo combo...for some reason no one wants to give me radiation...they say because of the location of my tumors they feel they might fry my liver rather than do it any good....I keep telling them that we wont know until we try but no one is willing to try...like I've heard here b4 one thing is for sure...the doctors are still in the iceages when it comes to this type of cancer...I wish I could find a doctor willing to try new things...Does anyone else feel like me? I feel that since this type of cancer is considered to be most of the time and I put in quotes "terminal" that the doctors dont really wanna try hard to help you because they know whats gonna happen already..like they have no faith that if they'd be willing to try something different or new that they actually might cure one of us...I'm rambling...just venting and frustrated feel like Im being pushed to the side because my cancer can not be cured...AND I DONT WANT ANY PITTY EITHER!!!!!!!!!I'm sorry ya'll just having one of those daYS! I want answers and solutions and no one seems to have any for me (today). God Bless. Tony
great news!!!! keep us posted...I wish I can afford to buy it right away but I will have to save for a bit to order it...the web site listed the liquid for $1080. plus it stated that in addition to the liquid I would need to order capsules and suppositories...Lucian it sounds promising but very expensive...just like the Oasis clinic in Mexico...all natural treatment for cancer but way outta my budget...its not fair lol but I guess these companies have to make some type of profit to stay in business...thanks so much for the info and please keep us posted...God Bless friend. Tony
thanks for the feedback ya'll...I will keep u posted...I have a pet ct scan 2morrow...say a prayer for me ok...tony
Hi all...just wanted to give ya'll an update on my situation and hopefully make some friends on this site...I was diagnosed May '07, had an unsuccessful surgery July '07...started a clinical trial at the Mayo Clinic in Jacksonville,FL which kept the CC stable until last month...apparently the Avastin and Tarceva combo stopped working so I am now beginning my journey all over again but this time at the M D Anderson Cancer Center in Orlando, FL. My new oncologist is hoping that the tumor board will ok radiation...then he will begin a combo chemo treatment that I guess has shown some results in at least shrinking the tumor...Gemzar & Cisplatin...I'd love some experience, strength & hope from ya'll if you have had a similar experience as mine...I feel great, my body is still functioning perfectly...the CC did metas to near by lymnodes but no where else. I have heard that most people die from chemo and not from the CC so of course this has me like AH!!!! Should I go with chemo...or should I do the herbal thing...or just let it run its course...I AM NOT READY TO GIVE UP I AM ONLY 32 YEARS YOUNG....JUST WANT TO MAKE SURE I CHOOSE THE CORRECT PATH...help. Thanks and HAPPY NEW YEAR '09 is gonna bring us a cure damn it hahahahaha. Tony
P.S. They originally gave me 8 months...that was 21 months ago woohoo and HA HA cancer!!! You aint gonna get me! hahahaha GOD BLESS!!!!
Hi guys I have pain due to my tumor and the only thing that has worked for me is 80 mg of oxycontin twice a day and 10 mg methadone three times a day. For the most part the pain meds actually make me very talkative and hyper. The doctor can't believe that I am not comotose from all the pain meds I take but I finally have some relief...And my pain was in the front and the back....and if it does make you sleepy, I don't know but I'd rather be sleepy than in the pain that I feel from CC.
Hello my name is Tony and here's my story: I'm 31 years old and was diagnosed with CC may2007. In July2007 a surgeon tried to remove the tumor but when he opened me up he realized that because where it is located he would not be able to remove it...he also found lymphs near the liver which also have disease...So he sowed me back up and pretty much wrote me off...I was told I have a year to live. My oncologist told me that chemo and radiation do nothing for this type of cancer...hence my first question...IS THIS TRUE< HAS ANYONE HAD SUCCESS WITH CHEMO & RADIATION?....I was referred to the Mayo Clinic where I am part of a clinical trial and am taking the experimental combo of erlitinib & avastin...it was shrinking everything slowly at first but my last scaN showed no improvement and there was a new area of disease on my liver that "might" have been there or "might" be new. I guess what is not working for me is the position of the tumor...I was told that radiation would kill my liver before it kills the tumor and that chemo might kill me faster than if I don't take it. What do you all suggest my next move should be? I've read a lot of your stories and have gotten hopeful that maybe I can find a surgeon who will try to remove my tumor even if its risky...and I have read that some of ya'll have been on chemo and radiation and had success...hence my next question...DO ANY OF THE HERBAL MEDICINES ACTUALLY WORK? Thanks hope to get some feedback and I will keep all of you in my prayers if you promise to pray 4 me too...I know one thing, I AM NOT GIVING UP AND I WILL BE A SURVIVOR!
Posts found: 14