Topic: One year now

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...

If looking foward brings you fear... and looking back brings you pain.... Look beside you and HE will always be there...

Re: One year now

Hi there, simpstw....

I guess I am where you were a year ago, newly diagnosed, attempted stent that did not work but did trigger acute pancreatitis attack.  They think my liver is resectable but with my bilirubin still up and downward spiral of health from this ongoing blockage  I'm not too optimistic about surgery anytime soon.

Am concerned they will schedule it for down the road like yours was and meanwhile the tumor has time to grow as might the other suspect spots on pancreas, small intestine, and liver.  they could very well open me up and tell me its unresectable.

Am encouraged by your success.  I wish you the very best in keeping this beast on a short leash.........

O my Father, if it be possible, let this cup pass from me; nevertheless not my will but thine be done.  Matt 26:39

Re: One year now

Hi Simpstw,
thank you for sharing your success story with us.  I am convinced that as this cancer affects everyone so differently, chemo will work for some and not for others.

I am so glad that it worked in your case!  And Rose, prayers for you that you get healthier so that they can try resection on you.

It's been almost a year since my attempted resection, and I am feeling ok except for fatigue.  I expect and want to be around for a few more years yet.

Re: One year now

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)

If looking foward brings you fear... and looking back brings you pain.... Look beside you and HE will always be there...

Re: One year now

Hi Terry;

I appreciated your message very much.  Today  I let myself get a little worked up over things.  I had this great plan to get the stent put in, get my liver draining, relieve the sypmtoms, eat the most nourishing foods, get my health up to a high degree, get the surgery and presto!  go on with my life.

At some point today I came to the realization that I am not in control of this you said, I didn't cause, I can't change it and I certainly can't control it.   It reminded me to turn it over to God and walk by faith and not by fear.  Somehow I have to trust that all things are working together for the good.  And yea though I walk through the valley of the shadow of death I will fear no evil.  Such comforting words.

I have had no real follow-up care since they placed the stent two weeks ago other than monitoring my blood via my local clinic.  I go in tomorrow for a consultation and should get a lot more info about what kind of treatment plan they have in mind under the circumstances.  All I know is that this itching is crazy-making, it's been going on for over two months with no relief of symptoms and I just have to have some kind of intervention soon.  I feel like I can handle pain more than I can handle this cursed itching.

Interesting tidbit:  Did you know that many monks wear horsehair shirts under their robes to purposefully cause itching and discomfort as an act of penance?  Some even sleep in them.  I'm sure God must shake His head in wonder......

O my Father, if it be possible, let this cup pass from me; nevertheless not my will but thine be done.  Matt 26:39

Re: One year now

I am so happy your treatment is working for you. Can you explain what fractionated chemotherapy is?


Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: One year now

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.

If looking foward brings you fear... and looking back brings you pain.... Look beside you and HE will always be there...

Re: One year now

That's interesting.  I'll ask my doctor about that.

Re: One year now

Thanks for sharing your story.  You give me hope and let me know I have to do more to fight for my mom.  She was diagnoised with cholangiocarcinoma in January,09.  She has been through 5 attempts to get the stent put in her liver before they actually got it in there.  They only give her 3 months to live and she has been placed in hospice.  The doctors are saying because of all her other illnesses, she is not a candidate for surgery.  As a matter of fact, she coded on the table during the 4th attempt.

My mom has been through so much but I just don't think that she is ready to leave this world yet. Physically she is week but in her mind she wants to do all the thinks that she could before. I want to make the best decisions for her to help her.  I am hearing what the doctors are saying but I am not believing them.  I accept that she has cancer but I don't believe, given her spirit, that she only has three months to live.

Again, thank you for sharing your story.  I will pray for you.