Topic: LONG TERM SUCCESS STORIES

I have not read many long-term success stories with cholangiocarcinoma.  Anyone on this website that is a long-term survivor - 10 years or more or knows of anyone that is.  Breaks my heart as I read post after post of all the heartache.

Nancy

Re: LONG TERM SUCCESS STORIES

Nancy,
Please be heartened - there are at least 2 long-term survivors on this board, I believe they are JeffG and darn, I can't remember the other name but I recognize them when I see their posts and they are always uplifting! Go to the discussion thread about good news/what's working and I'm sure you'll find some hope there. Miracles DO happen!-Joyce

Re: LONG TERM SUCCESS STORIES

Hi Nancy....  My name is Jeff G. and I consider myself a long term survior of this terrible disease.  Yes I have been on the rollercoaster ride from day one.  Surgeries, radiation, and poison cocktails.  I start a new cocktail tomorrow called taxotere.  8 years and 4 months I have been going at it.  I have many times wanted to throw my hands up in the air but somehow I keep going the full circle.  I guess you can say the merry- go- round of emotions.  So far family love and support and keeping as busy as I can without overdoing it has over ruled giving up life right yet.  God has a plan and still wants me to hang around on this earth a while longer.  I hope to reach a cure one day and be able to share it with all tainted with this disease.  Even if I get to try everything the medical profession has to offer and come up short ,at least they will know to look at something else.  I really believe research has come a long way in the past few years and more people are surviving longer.  Nancy progress is being made but will a cure happen before my time who knows.  When I see a cc member suffering and quickly running out of options ,I pray for a miracle and I pray that their pain and suffering is lessoned.  You are right it breaks your heart !  Even without this disesae there will be and is heart ache through out this world.  I don't know exactly what to say really, except my life is in Gods hands.  If he wants me to stay around for a while thats okay.  If he decides tomorrow or next month is my time to experience everlasting peace thats okay to.  The reality is we all have to face death sooner or later.  But it appears to to be more devastating and heart breaking when the so called normal cycle/sequence of life is altered from the way we naturally believe it should be.  I better stop rambling, before Rick mistakes my post as spam and zaps me Ha!
God Bless!
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: LONG TERM SUCCESS STORIES

Great message Jeff- do you think one thing worked better than others?  Was there a particular chemo that had the best results?

becky
blessed are those that are cracked,
for they let in the light!

Re: LONG TERM SUCCESS STORIES

Hi Becky,   I really believe it was equal results across the board.   Maybe the carbiplatinum with 5 -fu push  rocked the boat more than thre other combos.  I say that as it actually reduced tumor size in liver and lungs, but evently became non effective and the tumor that shrunk returned to the original sizes.  I believe doing and changing regimens as soon as they appear to be ineffective instead of going full courses of 9-12 weeks whatever applies.  If the cancer gets smart and catches on at the 3rd or 4th treatment then move on to something else and surprize it with some other regimen to figure ouy.  I believe this is what has kept me stable for so long. Today I tried Taxotere by it's self.  Just waiting now for the anti meds to wear down and see how hasrsh the side effects are going to be.  My oncology nurse feels this drug will most likely cause me to loose my hair and possiblly my finger nails.  She said it was some pretty potent stuff as rough as carboplatinum if not more so.  Well a few days from now I'll find out.
God Bless,
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: LONG TERM SUCCESS STORIES

Hi Jeff- You've been on my mind all day.   Hope the side effects are too bad.  Hugs to  you.  Patrice

Re: LONG TERM SUCCESS STORIES

Hi patrice..... Thanks for your thoughts and caring. First day I've had the normal tiredness, pale white, and some real minor stomach craps from all the fluids dripped in me.  My Oncology Nurse said I would most likely go bald and could loose my finger nails with this chemo.  Not a surprize as I had all ready researched.  I just wanted to test her knowledge of the drug I guess.  Is Dave doing better yet?  I'll post again next Monday after my weekly check and blood work results.
God Bless you Guys!
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: LONG TERM SUCCESS STORIES

Jeff

I will be thinking of you and hoping that this treatment won't be too rough.  It sounds like a promising combination.  Whenever I read your posts I always find your words uplifting and comforting. 

Take care, Jules

Re: LONG TERM SUCCESS STORIES

Hi Jules,   How ya doing mate?   How coincidental I was Just reading the Ipswich evening Star online and clicked over to this site and you were the first new post from the uk.  Are you anywhere close to Ipswich?  I have family there and Felixstowe, Immingham, Grimsby, and London.   All on my wife's side.  We stay in touch very much with a live web cam set through a free hot mail account.  You can see and talk live as long as you want.  Pretty neat I think.  My relatives from Felixsrowe are coming to visit us next month.  I sure hope I can keep up pace or they'll have to do all the shopping and hopping with my wife and I' just play chef a little Ha!  Thanks for the the encouragement mate.
Take Care!
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: LONG TERM SUCCESS STORIES

Jeff

We live on the south coast in Sussex, Ipswich is in East Anglia - quite a way from us, we are about 2 hours drive from London.  Is your wife from the UK? - the webcam sounds like a great way to stay in touch.  So you cook aswell..you really are too good to be true..

my Dad's having a bit of a rough ride right now with ascities and a really bad persistant cough plus he has to get up approx every hour at night to 'pee' - as he puts it.  He is being really brave and feeling pretty dreadful, it is very hard for us right now.  I love him so much - I always have thought the world of him.  I find it hard to reach out to him right now as, understandably, he is extremely low.

Re: LONG TERM SUCCESS STORIES

Hi Jules,   I'm so so so  sorry your Dad his having such a rough time.  It sounds like he has considerable anxiety with all that is going on.  His bravery helps keep his dignity intact I would suppose.  You know Jules, my wife and I just had a talk the other evening about our togetherness and reaching out to each other.  By the time we were done talking it came done to each of us were afraid of what to say worrying that it may be to up setting.  Really what we were doing is just trying to protect each other from further worry and emotional burden.  Well anyhoot we made a pact not to hold back anymore.  We will share the good and bad followed with a little cuddle of support.  Jules it's so difficult I know and I don't know what to say except as long as your Dad knows you are so proud of him and how such a brave man he is, and you love him dearly.  Other than that, just being there for him as much as you can is the best anyone can expect. 

Bet wishes to you Both!!!!!!
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: LONG TERM SUCCESS STORIES

Jeff- let us know how the taxotere does-
they say God's miracles in God's time- don't rush it- well you are one of god's miracles-continue to shine fo rhim

becky
blessed are those that are cracked,
for they let in the light!

Re: LONG TERM SUCCESS STORIES

Hi Jeff,

It's so inspiring to hear your story and how brave you are. All the best and I hope that the taxodere works for long and you don't feel too bad. In your time you have been fighting this disease did you try radiotherapy and did you ever combine Davanat with any of the chemo treatments. Also, have you heard of Escozul, blue scorpion venom in Cuba being used to treat cancer.

Hope tis message finds you Ok.

So great to have you around, specially for newcomers like me. I am off to Spain tomorrow to see my dad (he lives in Spain and I live in London which makes it really hard).

Best regards.

Katia