For me, CTCA had me take L-Glutamine powder three times a day for five days post Chemo, then stop till next time. I had no symptoms of neuropathy thru pout my noew completed chemo treatments....

Saty positive look for the good as hard as it may be... and trust God...

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(33 replies, posted in Introductions!)

Tom,

FAITH, HOPE, POSITIVE ATTITUDE and A SECOND THIRD or even FOURTH OPINION.....

If I had believed my first Dr. and thier prognosis, (and it turned out to be correct) I would have been dead now for about three months....

I refused to believe what they told me and sought out and found another facility and they gave me hope, believed in ME and thier treatments..... well I just recieved the results today, (after six treatments) of my PET, CT scans and blood work....  ALL are NORMAL and ALL show no evidence of liesions and are "unremarkable"... all previous liesions are no longer seen... bile ducts show no sign of dialation... Chemo has been discontinued (after this one #7 for good measure) and I am now on 3 month check ups..... not bad for having supposed to be dead for three months now....

Never take your first or even second opinion search out the "specialists" those who offer Hope to begin with, and do not strip you of hope from the get go..

God bless you,

Terry

Well I am at CTCA in Zion, and just got the results of my PET & CT Scans and bloodwork,,,, My blood work continues to be normal, CA19-9 continues at 17 and all scans are "unremarkable" and are "normal"... "biliary ducts show no dilatation".. I began treatment at CTCA in Oct. 08 after being diagnosed at another hospital in April 08... I have had, counting this one "for good measure," seven rounds of fractionated Chemo.... Day one I get Gemzar and Trevatere (sp) Day Two I get Gemzar and Oxiplatin and on Day Three I get Oxiplatin.. Then repeat treatment in 21 days... Well for now I am "clean" and show "no evidence of cancer" and I will take that for now.. I now go to quarterly check ups... So that is my good news and I hope and Pray others will take hope, that there IS HOPE ..

God bless,
Terry

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(8 replies, posted in Introductions!)

Fractionated Chemo is the giving of Chemo over three consecutive days in my case.

Day One I get Gemzar and another chemo drug I can't remeber, but starts with a T both via my port (IV)

Day Two I get Gemzar again with Oxyplatin both via port.

Day Three I get Just Oxyplatin via port.

21 days later I repeat the process....

CTCA claims this process exposes the cancer to repetative and longer durations to the chemo drugs and reduces side effects which in my case it has as the only side effects I have had is extreme fatigue for 2-3 days post chemo, then I "snap out of it" and its back to work and feeling perfectly normal leading a normal life... till next treatment.

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(8 replies, posted in Introductions!)

Dear Rose,

Very nice to "meet you" albeit via message boards.

I too worried about any delay in treating this "stuff", but they really gave me no choice in that after the pancreatitis episode I had lost 45 #'s was weak etc etc..  I could "visualize this stuff sneaking around and growing everywhere.... But one day I realized that I could not change it, I did not control it nor did I cause it.... So I gave it to God and asked him to carry this burden for me... and HE did, from that day forward I have not worried about this "stuff" since... what will be will be and I know He walks with me every step of the way, he guided me to CTCA and He took away all burdens.

I hate to hear that you are still having duct blockage and resulting high billirubin, I remember when I was first diagnosed those "symptoms" itching, no appetite, jaundice and of course the demands it places on your liver... Hve they tried the new metal stents or are stents not "workable"?

I pray for you the very best and hope for you a quick turn around in your battle.

Terry (simpstw)

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(8 replies, posted in Introductions!)

Well I am new to this site and was diagnosed with CC one year ago (3-08). However in "checking out the tumor" the Dr. inflamed my pancreas and I developed Pancreatitis with neucrosis(sp) in April 2008. In any case that almost "got me" and after major "clean out" surgery, installation of two stents in bile ducts and rermoval of 4 liters of fluid from my abdomen, 4 weeks in hospital, I began my recovery towards being strong enogh to resect my tumor (as it was operable at that time) Well they scheduled the operation for October, up till then (March till October) I was given no treatment what so ever... Well once they "opened me up, they saw a spot on my liver, so they took my gall bladder and closed me back up, electing not to do the resection of bile ducts.

Well I was by now not too confident in the Dr's or Hospital so I came home and did some research and called Cancer Treatment Centers of America... (the oncologist at the Previous hospital gave me 3-9 months)  Cancer Centers immediatley started me on a every 21 day fractionated Chemo therapy after confirming tumors in bile duct and three on liver, at that point my CA-19-9 tumor marker was 305.

After first treatment my CA 19-9 went down to 226. After second treatment it went down to 46. After third round of chemo it went down to 26 and scans that were ordered after round three revealed no evidence of tumors and bile ducts had no dialation were open and in fact one of the stents had fallen out.. after treatment 6 CA-19 is at 17,

Well they wanted to quit chemo after six but as I was going back for complete set of scans this month I "volunteered" for one additional round for good measure.

All through my previous six rounds I have been fortunate enough to not have suffered many side effects and in fact have been able to resume work full time except during and for three days post treatment (very tired).  All my liver, blood,  billirubin, all bloodwork numbers returned to and have been normal since first treatment. I have no pain, no symptoms no nothing to this point... I hope and pray it continues and wish all who have this terrible disease the very best...

Last April I went jaundiced in two days and went to the emergeny room, I was told then what I had (CC) but ended up in Denver for and official diagnosis and as they couldn't do the stents where we lived, they placed one but didn't have the expertise to do the other.  My common bile duct was completely blocked.  I had surgery scheduled to remove the CC in the bile duct for June (at that time the doctors believed it to be contained to the duct alone and no sign of spreading).  Well I developed necrosing pancreatitus and was life flighted to Denver for treatment.  I had extensive surgery to take care of that which was caused from the placement of the first stent down in our local hospital.  That recovery postponed the surgery for the CC until October 2nd.  Needless to say I was ready for surgery, the doctor got in to remove the bile duct and resect and has found that it has/or already was in the liver.  Chemo is my next phase.  Don't really know what all to expect and am relying on God to carry me through and get me through each day. 

I have 4 young children ages, 8, 10, 12 and 13.  I am 54 years old and married with a wonderful wife.  I have a lot of support but all this is so new and unknown to me.  Look forward to getting to know some others and what to expect with this.
Terry