A Glance At 27 More Cases From Cholangiocarcinoma.org

Hi, Including these 27 cases,it will be a total of 100 cases of CC from this web site(part1-part3 Glance series) ; and it should provide some situations that may be similar to what you are looking for and compare with. Good luck and God bless.

part 3 cases from CC.org.
1. My 84 year old mother was diagnosed with a Klatskin Tumor in March 2010. She was not a candidate for surgery beacause it involved some blood vessels and also beacause of her heart condition.
She went through a course of radiation (IMRT). She tried chemo using Gemzar but got too sick from it. It dangerously effected her heart and put her in the hospital for a week. She could not continue.
Since then we have been doing things following a natural approach – using many of the things in Andy & Linda’s Alternatives post as well as other supplements.
My mom’s recent scans show her tumor is still small and has not grown any. So I was told she is doing great. However, her cancer markers have increased tremendously over the past months – now more than 3000. Consulting with another oncologist, I was told that although her scans look good there must be cancer now somewhere else in her body. One picture shows a little fluid in her abdomen and the doctor thinks there could possibly be cancer cells there. Aso a picture of her lungs show some small nodules which are too small to test at this point.
I was told she with the cancer spreading she does not have more than six months. At this point, although I have noticed her getting much more tired she is still able to take care of herself and do many of the activities she enjoys including going places with and my children. I am not ready nor is she too give up yet.–halinamay 9/28/2011

2. I’m Lisa, I’m 45, and live in Washington state.I was diagnosed in August 2007.I had 6 weeks of radiation in October 2007.My current chemo is Gemzar and Xeloda. .(2/17/2008 entry) My tumor shrunk 50% in the first few months, but now things have stablized over the past year. It’s hard to say what the most effective treatment is, as people vary in their response to the chemo. There is a lot of trial and error involved, which is hard to accept when you’re fighting for your life. (7/10/2011 entry)This coming August will mark four years of survivorship for me. I know that is not typical and I thank God every day that I am still around. I have been in Stage 4 for about 2 1/2 years now with mets to the lungs. The liver has been ok-ish for a while but I’m seeing some negative signs that all is not well in that area. But since there is nothing I can do about it, I’m just letting it go.
I’ve been through about a dozen or so different chemo regimens, until my oncologist ran out of tools in his toolbox. I am currently under hospice care. Everyone is different with hospice care. For me, it means that I don’t have chemo anymore, and I have a nurse, a social worker, and a massage therapist who visit me every other week. All meds go through the nurse. It’s been working out ok.
One thing that I need to remember is that I am ill. I feel normal and do things, like weeding my backyard, then I collapse from exhaustion. I need to learn to conserve my energy and be on a more even keel.( 9/16/2011 entry from other members) Lisa passed away after the long battle with CC.Lisa 9/8/2008

3. Charlie 53,was diagnosed 5/07.Underwent 14 weeks of Gemzar last summer.Chemoembolization 9/07.Liver resection 11/07-over half the liver removed.Radiation and Xeloda Jan.-Feb. 08.
Radio frequency ablation April 08.Oxaliplatin and Xeloda chemo just finished series of 6.
CT scan in Oct. and try to figure out what’s next.—Carol-8/31/2007

4. (36yearsFemale) patient, Kris from South Carolina but living in Sweden with my wonderful husband. diagnosed in Dec 2006 in Glasgow, Scotland while attending friends wedding
Had liver resection Jan 2007 in Edinburgh Royal Infirmary (love the doctors there!!!)
I wanted chemo as follow up but was denied (a very sore point of contention)
Nov. 2007 scan identified spot on liver and abnormal lymph node which were determined to be nothing in Feb 2008. MRI, CT or PET scans every 3 or 4 months
I have remained cancerfree so far but I feel like there is an imaginary clock counting down to a reoccurance., she passed away last year.–devoncat 5/27/2007

5. Sue from Indiana, 50 years old
Happily married to my husband for almost nine years.
And someone who actually loves her job!
-Diagnosed 12/06 after having to leave a cruise ship because I felt so bad.
-Right lobectomy and cholecystectomy 01/07
-No chemo offered. I too wish I had pushed more for at least one course.
-Just recently found I have a “node” in each of my lungs, but have been told to watch for change thru CT scans (very possibly these are from earlier infections). If there is any change, they will biopsy. Trying not to stress over it.-CT scans and blood work every 6 months now. Am still fighting digestives issues and abdominal pain, but working on both problems.-Liver remains cancer free per scans.-Feeling old, but pretty darn good, considering!- (5/16/2011 entry) I had the right lobe of my liver and my gallbladder removed in January of 2007 (feel free to check out my early posts). I remain cancer free so far. Having a successful resection is the only true “cure”, altho many people live with this cancer for many years. As far as chemo is concerned, I had none. My doc felt there was nothing for the chemo to attack and suggested not doing it. We will see how that decision affects my future. I may regret that decision some day, but for today, all is well. I am down to one CT scan each year and I do not worry about the cancer returning. At least, not EVERY day. Some days are still difficult. All you can do is literally take it one day at a time. —scragots 7/2/2007 (no adjuvant chemo,no recurrance after resection as of sept.2011)

6.Kristin from Kentucky, 51 in a couple weeks!
– Something “wrong” in 8/03. Finally diagnosed 1/04, successful resection 2/04. No follow-up treatment offered– I should have pushed for it!
– Recurrence in 8/06, followed by failed surgery– the darn thing is stuck on a major blood vessel
– Seven weeks of radiation and Xeloda 11-12/06.
– Tumor stable until 7/08, then CAT scan found growth, but a new scan 2 mos. later found it had stopped again. Hooray!
– I take good care of myself with supplements (especially milk thistle and ginseng, but also about 20 others), eat mostly vegetarian, have acupuncture and energy healing every week, and exercise hard (run 18 miles a week, do serious weightlifting.)
– Now have blood work and onco visit every month, scan every 3 months.
– When I fill out one of those questionnaires that asks you to rate your health, I always start to check “excellent,” before I remember…—Kristin 2/2/2008

7.Lainy (68) & Teddy Sardina (76) Newly Married 14 Years
Sun Lakes (active adult community 20 miles South of Phoenix)
Blended family of 24 kids and grandkids who all think they are blood related!

Teddy: Diagnosed Bile Duct Cancer August 2005. In bile duct valve.
Surgery end of August – Whipple aborted after 4 hours due to
damaged pancreas from dye.
September 16th – Double e-coli infection hospitalized 9 days.
September 25th – Whipple Surgery cancer removal successful.
Nov. 1st – Tiny hole developed at resection went to REHAB for 1
month on nothing but IV. Worked, hole closed.
April 2008 – Cancer returned where duodenum used to be.
September 5th – completed 5 weeks of radiation to prepare for
cyberknife to be scheduled after PET Scan Oct. 27th
In the meantime cancer has crimped right ureter, using stent and
drainage bag for urine, surgery soon to insert tube and get rid of
the tube and bag.. Teddy passed away early this year—Lainy1/13/2006

8. Hi Iam DR MPReddy from india.diagnosed in 08/07 had Rt lobectomy and cholecystectomy with roun-n-y hepatojejenostomy in 3/8 with cancer free resection.back to full work in 4/8 doing pretty good.having regular usscan.ctscans,lft/afp studies every one month. sofar so good.though i had bile leak for 1 month i kept working stubernly. bile leak stopped in 2months time.liver compleately regernarated in 2months time.Incidentally iam a practicing Gastroenterologist busy doing as many as 40 procedures a day and diagnosing about 3to 4 cancers every day. my life and attitute has tolally changed with cancer patients . now iam undestanging there physical and emotional pain as well as i know how the pt feels. Its difficulty to pratice like that when i my self having cc and giving emotion support to every one. till this day only myself and my wife knows this secret as i dont want any body to sympathise with me. Iam a trekeer in pastbefore the cc story i have trekked many mountains like kilmijaro in africa and alps in swiss. mt fuji in tokyo and may areas in in himalyan range upto 21000feet height. Recently in nov08 i have trekked Nathull passin himalyas near india china border of 15000 feet to proove myself . I want to live and conquer the disease and serve the people and share there emotions. iam confident and courageous and will live with hope and prayers.(also 5/16/2009 entry) hi mary iam 52 male from india and a practicing gastroenerologist by professin and see many cancer patients day in day out. unfortunatly i was bitten with the same bug of hilar cholangio carcinoma in 2008 jan and underewent edge free resection of left heptectomy along with 2cms klatskin tumour., since then i have improoved a lot and every month iam under going scan which is negative .lft is normal viral markers are normal. hoping to live normal full life . —malipal33 1/29/2008

9. (54 years old) I was diagnosed with Cholangiocarcoma almost 2 years ago, they removed the left lobe of my liver at that time. I’ve been getting CT Scans every 12 weeks for the past 2 years and the scan a month ago showed 2 areas the doctors were concerned with. Last week I had needle biopsies done and one of the growths was treated with Radio Frequency Ablation. My second growth couldn’t be treated that way becasue it’s too close to my stomach, so I’ll be having Cyber Knife Radiation done on that one in the next few weeks. The doctors orginally talked about the possibility of liver transplant but have now rejected that. I’m 54 years old and am attempting to care for my aging parents. All my friends and family seem to think that as long as I remain positive I can beat this, but I feel like I need to face reality and accept that I probably have very limited time left.(1/19/2011 entry)– (Cyberknife and RFA). My Onc and I decided to wait on the procedure and he will battle BCBS for me when we feel it’s time.—MEA 4/17/2009

10. I’m Diane from Whidbey Island, WA
I was privileged and blessed to be the caregiver for my husband, Brad, who passed away August 17, 2008. J-pouch surgery due to UC in 1982., PSC dx in 2005 CC dx in 2006, mets involved
radiation and chemo combos for 2 yrs.—DIANE C 9/27/2008

11.(38 years old Male)Hi Everyone! I’m Heather from Camp Verde, Arizona.
Caregiver to my husband, Lee a young 38. Diagnosed in February 2008.Prognosis in April, 2 months to live. Currently, fighting the battle of his life with Gemzar weekly.
Married 15 years this year and planning on many more.
Joined this site the very night I got home from the hospital, and found out that God gives us strength and hope not only through pray and worship, but by wonderful people like the ones on this site. (.2/7/2009 entry)This morning at 9:15 am I traded hands with Jesus at the end of the road and watch them walk into eternal life. Wednesday, Lee went on life support when a severe infection attacked his body. Knowing that the machines were the only thing helping him, we took him off yesterday afternoon. The doctors told us that he would pass within the hour….but in Lee’s true fashion, he fought for 18 hours. Emilee and I will forever be indebted to him for the wonderful life he made for us.—-heatherkp 2/22/2008

12.(30 year Female) Sara from Houston, Texas, USA. Co-caregiver to Kelly Lester, who had intrahepatic cholangiocarcinoma. The following summarizes Kelly’s treatments:
November 2005 – Kelly diagnosed with cholangiocarcinoma after having pain in her upper right quadrant for 10 months. (Many missed diagnoses in the interim)
December 2005 – April 2006 – Kelly became a patient at MD Anderson in Houston, Texas. Her chemo protocol was a 21-day cycle of oxaliplatin and Xeloda, with infusion of oxaliplatin on Day 1, pills of Xeloda on days 1-14, and no treatment on days 15-21. Kelly received 3 rounds of this protocol, and experienced 17% shrinkage of her tumor by the conclusion of the 3rd round. Kelly continued with the protocol for three more rounds, at which point her surgeon agreed to proceed with an attempted resection.
late April 2006 – 1st attempted liver resection – Aborted because the surgeon determined Kelly had developed fatty liver.
May 2006 – The surgeon conducted a portal vein embolization to direct more blood to the cancer-free lobe of the liver. No chemo was administered while the cancer-free lobe was allowed to grow.
June 2006 – 2nd attempted liver resection – surgeon saw seeding on Kelly’s abdomen, terminating the procedure.
July 2006 – New chemo protocol begins: Gemzar and cisplatin via infusions. This protocol continued through September 2006.
October 2006 – scans showed this protocol was not working, and the tumors were growing.
November 2006 – Kelly decided to stop all treatments, and passed away 7 days later at 31-years-old. —Sara 1/12/2006

13. Caregiver to my WONDERFUL FATHER DAVID COOK for 2 ‘scary’ years beofere he passed away 9/30/2007..I am an only biologioal child of both parents.
His journey with CC was very, well, I can hardly describe my emotions and feelings while I tried to find a cure. I am holding on to wonderful memories and enlightening conversation with my dad. He loved me so, so much. Nothing can take that away.
Diagnosed June 21st 2006. nonoperable 2006started CAAT Controlled Amino Acid for about 6 monththereafter Xeloda/Gemzar ;developed ‘unknown’ infection
passed away from kidney failure????—celoi 6/6/2006

14. I am Joyce – from Endicott, NY
Caregiver to my Husband Butch. He was diagnosed in early March 2008 with intrahepetic cholangiocarcinoma and passed away October 9, 2008, following a liver resection performed in July. Although the liver resection was successfully performed, he never recovered from the surgery, and the mets continued to grow – more aggresively than ever. He would have been 67 years old on December 12, and he fought a ferocious battle. God was good to us in that he ws able to pass away peacefully at home, holding my hand, as I prayed the Lord’s Prayer.-jclegg6/1/2008

15. My mother, Kate (79) was diagnosed with cc in June. Had 65% liver resection and has done remarkably well. Hers was a T3N0. She starts chemo on Tuesday. (1/25/2009 entry) Katie Bug lost a hard fought battle on Friday. We brought her home from the nursing home on Wednesday. She walked in with a little help from us. She sat with us in the living room for awhile and then asked to go to bed. I think once she was home she was able to relax and start letting go. Mama is now at peace.–JoBeMe 11/2/2008

16.(11/8/2008 entry) Hello, I am Iris and live in the Netherlands.
I am caregiver for my wonderful husband Peter, who was diagnosed in May 2007 with cc. Surgery was not possible and he has been fighting this beast for 1,5 year now, against a life prediction of 2-3 months.Now however, he seems to be loosing this battle. At the moment he is in hospital and the doctor mentioned the word terminal.To-day he will have a liver-echo, which will tell us more. (12/30/2008 entry) On Monday-morning, the 29th of December, on my 63rd birthday, my wonderful strong Peter passed away.
I have a deep respect for the way he dealt with his illness. Never a complaint; he put all his strength in living, after he heard what was wrong.
The last 2 months have been tough, but not desperate. I could keep him at home and take care of my love myself. Up till the end, he had hardly any pain. Only the last weekend was tough, because his brain wasnot clear anymore.Sundaymorning he fell in a deep sleep and he didnot wake up anymore.I will allways love him.—Iris-A 5/15/2008

17. My husband is 57 and is doing well. We are from Kansas and we were referred to Johns Hopkins Hospital in Baltimore, Maryland where he had an 8 hour surgery on Sept. 24th. Unfortunately, because of the location of the tumor and the fact it encased his hepatic and portal vein arteries close to the liver, the liver resection we had hoped for could not be performed. Our surgeon removed his gall bladder and performed a roux en y to help his bile drain normally. He currently has 2 stents in the confluent area of his bile duct to keep them open. These tubes extend out of his chest, but he has no external drain bags, although he had bags early in his diagnosis. Currently we are back in Kansas where he is receiving daily radiation treatments and chemo (Xeloda). So far his only side effect has been fatigue. Our hope is that the tumor will shrink enough that he will be able to receive Cyberknife treatments in Wichita, (8/4/2011 entry) he received followup treatment in Wichita. The surgeon in Wichita, Dr. Duane Osbourne was instrumental in setting us up with a colleague at Johns Hopkins, Dr. Pawlik who performed the surgery. Both wonderful! Dr. Osbourne is very familiar with CC. You might try to contact him and get an opinion. Ted’s oncologist is Dr. Parva Reddy (Cancer Center of Kansas) in Wichita, he is also familiar with CC and his treatment plan has worked well for Ted. He was recommended to us by an oncologist specializing in Bile Duct Cancer from KU Med. Center. Ted also received daily radiation from Dr. Joseph Kelly at the Cyberknife Center in Wichita. Excellent doctor! If your daughter needs to have surgery you really need to be at a hospital like Mayos, MD Anderson or Johns Hopkins where a team of surgeons specializing in CC will be able to help you. The doctors I have mentioned above are in Wichita and able to advise you. Ted’s tumor was unresectable but was treated with Xeloda and Radiation and he has responded well, to the point they can’t see the tumor on the PET/CT scans and MRI tests that he has done every 3 months. It has been almost 3 years since his diagnosis –dlm12/22/2008

18. . i found my own tumor in nov of 2002. i have intrahepatic cholangio too. during my first liver surgery, my entire left lobe was removed. i had a recurrence within a few months.
i had my 2nd liver surgery in feb 2004. had another recurrence and a 3rd liver surgery in aug 2006.
post my 2nd surgery i had more than 4 years of various chemos. i had a short ‘break’ from chemo at one point. my last chemo treatment was in may of 2008… WOW that’s shook me a bit just now to realize how long it has been…. i had a VATS procedure in feb (?) 2010 – the lesion was benign. when i found my tumor, i cried for days. post my diagnosis and learning how serious this disease is, i cried harder.
with my first recurrence, i felt it was even more difficult to cope as the research pointed toward a really bad outcome.however, i had to focus on the task at hand and then my fight with getting my insurance to pay for treatment kept me very busy. for me, it took some time to adjust to what i was dealing with and just like everyone else, life’s other challenges did not give me a break.
this site did not exist when i was diagnosed and it is truly a blessing for everyone who has anything to do with this monster. i hope that this support family will help guide you, ease your pain, and help you through a fight of a life time.–barb H–7/13/2007( had 3 resections,4years of chemo,still beating the CC as of sept.2011 almost 9 year after diagnosis)

19. I am new to this site. Have had CC for almost 5 years now. I was touched by all the stories I have read. I really felt alone due to the fact that because I am female,everyone assumes I have breast cancer.I have been through 2 resections,and different chemos since 2007. I feel fortunate since it does not affect me with nausea, fatigue or prevent me from living my life. I had a “port” put in only 3 weeks ago. I refused at first, but gave in. Only to find out sometimes it only works one way. They could not draw blood. Ouch! I am pretty much “veinless”. Had to have it replaced Monday because the tube to my vein was too short and was coming out of my neck. —-Nica 6/22/2011 (2 resections, different chemo,5 year survival and counting)

20.(60 year Female)(8/19/2011 entry) My name is Kathy and I was diagnosed with stage 4 cholangiocarcinoma with hepatic artery and portal vein involvement July 2009, a few weeks before my 60th birthday. Left liver lobe is atrophied and I only have the one main bile duct remaining off the common bile duct (where they should go into a V). I was told I had 3 months to 14 months max.
It’s true that statics aren’t good for us with this diagnosis, but you have to remember that these statistics are for the masses, not the individual. I believe they are also old statistics that don’t account for a lot of us. I did the protocol for a liver transplant at Mayo but did not qualify as my tumor grew too large the following month after diagnosis (at another large hospital with little experience with bile duct cancer). I then had radiation and 24/7 FU-5 chemo for the next two months. This treatment brought a remarkable recovery. Even though the tumor never shrank, it stayed stable for almost two years and I felt healthy. It was a hard decision to have a round of cits/gem chemo during the middle of this two year time frame, but I did it as a precaution. The “area of disease” has now spread to my liver and I also have some “worrisome” spots on some lining of my stomach (I think), but I have just completed one cycle of a phase I clinical trial and guess what?! My tumor markers have already went down 272 points!!!– kathyb 2/15/2010

21.(8/21/2011 entry) My husband Tom has CC, he was diagnosed 3 1/2 years ago. He was able to have a successful liver resection, they removed the entire left lobe of the liver and part of the right lobe. About 85 %. They would not do chemo or radiation because they had clear margins. 18 months later he started turning yellow. There was a new tumor in his right remaining bile duct. Currently he has a external drain bag to drain off the bile that is not getting into his intestinal tract.We (mostly I) would not take no for an answer. When his then oncologist said go home and get your affairs in order, you have ‘maybe’ 6 months. We sought 2nd, 3rd and 4th opinoins and thank heavens we did. We went to Marshfield and the oncologist there agreed that it was inoperable, but that maybe Radiation and Chemo could help. His original surgeon also agreed with Radiation and chemo. The 3rd and 4th were the same.He had 28 rounds of radiation, then onto oral chemo (Xleoda) and then after a radiologist read a scan wrong, he started IV chemo with a Gemzar/Cisplatin. To make a long story short, if we would have listened to the first oncologist, he would be gone – instead he is still here some 20+ months later. His doctors are amazed that he is still here beating the odds.—mlepp0416 1/8/2010 (resection once,recur 18 months later; radiation and chemo; 4years survival and still fighting.)

22. my dad has cc. he wants no treatment at all. he is 75. we had him to pittsburg. he was supposed to have surgery. he has refused. he wants to past away at his home. we respect his decision. please let me know what happens now.(10/12/2010 entry) dad is very weak. his cc is in the last stages. he is now in north carolina with my sister. he needs constant care. he can’t even walk. he is refusing any hospital care. dad had a stroke about 5 years ago and he can’t hardley talk. his left arm is paralizied, but he still tries. when dad tries to eat it comes back up. not nausing, just can’t swallow. a little pain, not alot. weakness is his main problem. Dad has been admitted to the hospital in NC. He has jaundices again. They are going to do the stents again. He has agreed to a feeding tube . dad was send home. he was not dehyrated nor under fed. Just the cc. put him on antibotics(to keep pnem. away) Hospice is coming today. Hospice has started to help now. He has pain patches and then breakthur meds. hospital bed, potty seat , wheelchair, walkers, the list goes on. I pray my sisters can handle it all. Dad’s eyes are now rolling to the back of his head, when he sleeps. Its so scary. The reason I’m writing this is to keep people, like myself, informed at what might happen .(11/3/2010 entry) hes in alot of pain. have him on metadone and breakthur meds. Pittsburg wants to do another ercp on him he says no. his choice. but he is still hanging in there.. He had the cather took out. still hard for him to use the potty chair.11/8/2010 entry) dad’s not doing good. his heart rate is down to 46. he is just here. they say that his heart will make him go before the cc. I think hes tired of fighting. maybe 2 days to a week left. they say most likely he’ll go in his sleep. He runs a fever and then chills. he woke up ,only to throw up, and then back to sleep. hes weak. oh ,so weak. no smile, nothing.(11/16/2010 entry) update on dad he is walking, talking and has moved back to wva., on his mountain. he still is sick but he seems to be getting better. Is this possible? This man was on deaths door ,now he has surprised us all. Is this a normal part of cc?(12/21/2010 entry) update on dad. he is as yellow as a banana. his liver enz. r 12.5. still refuses the surgery for stents in PA. He says he’ll go to the hospital when he gets sick. He is still walking and eating. his bp is totally normal and pulse is 68. He weights 127. lost 3 lbs.(1/9/2011 entry) i beieve everything happens for a reason. dad was in a bad car accident. he broke 7 ribs. drs said his bones were so thin u could see thru them. that the bad news. good news, since he was in the hospial the drs seen how yellow he was and how high his liver count was(14.7) they done the stent surgery. both stents were completely blocked. they unblocked one side. the other side the klatskin had completely block. cant get that one in. one unblocked stent is better than no blocked stent. if the cc dont get him, he hAS aleast another 2 to 4 months here on earth. his liver cout is now 11. micrales happens.(2/22/2001entry) dad is still kicking(as he says) He had to go to the hospital. He has started to hurt a little more. Just the cancer pain. Other than that hes doing fine. his stent is doing good(he only has 1 working. the other one is blocked by a tumor.) liver 1.5. very good. (4/25/2011entry) update on dad. he is still going strong. he has to have another stent replacement, but so far so good. he still lives by hisself and doing everyday stuff.(6/19/2011entry) dad is still with us. tomorrow is his birthday. Thank God for all the miracles. He will be 76. Still doing his own things. no treatment just some pain meds. still driving, taking care of his self. He is doing so good. its unbelievable. in sept , the drs. said a month at the most. almost a year has gone by and he is still here. a few close calls, some stent replacements, but he is still here!!!!! thats the best Fathers Day ever!!!!!!(9/19/2011entry) its been a year now , dad is still with us. he has two more stent replacement since i was last on here. about every 2 months now. he is yellow again. been a month since last replacement. he seems to be doing good. just pain meds. Still lives by his self. my brother lives above him. keeps a good eye on him. dad looks bad, but he doesnt let it get him down. he has brought him a trailer and had rooms big on. i think it just gives him something to do, cause he has two homes. he has got himself some more dogs to raise. he just keeps busy. he is a unbel.iveable. keep us in your prayers—-sistercorb 10/10/2010.(No treatment,just stents and still doing ok for a year as of 9/19/2011).

23.(67 years Female) (9/5/2010entry) My mother-in-law was just diagnosed with bile duct cancer. She has received an exterior drain and goes in this week for the metal stent and ercp test. She is very tired and has no energy. I’ve read after chemo this is normal, but is this to be expected just newly diagnosed? Just 4 weeks ago she was active, busy and full of life. my mother in law is also oping for no treatment. She’s being treated through Mayo Clinic in Jacksonville. She did have a plastic stent inserted just two weeks ago,what a HUGE difference it has made. She doesnt want any surgery, etc. I’d love to stay in touch with you since we are in the same situation . My MIL is only 67 and otherwise was in terrific shape and health as a horse, or we though.We found out she had cholangio around Aug 1st…she was jaundiced (and had an external drain) and boy what a tough 60 days until the stent and capping off the drain. She says now she feels almost as good as she use to. Dr’s are not very promising sounding, very professional but have prepared everyone for the worst at this point. 3.- . (9/5/2010entry)She’s 67 years young! The doctors do not feel having surgery would give her any more additional quality of life time and since she lost her husband to cancer after several major surgeries and recoop, she is determined not to go that route. She doesnt feel the major surgery and recoop will offer her much more time than things just taking their course . Although the dr’s have no said a time limit (thank goodness, there’s no stamp on her–borrowed that from the commercial). She’d rather have the stent and possibly radiation and have as much enjoyable time as possible. I am just concerned that all of a sudden she is so tired. She has no pain and the jaundice has been gone for about two weeks. Her cancer is in the bile duct and tumor blocking the bile from passing. The doctors told us she would more than likely have the same time frame for quality of life with and without the surgery. She’s been to the hospital with dehydration My MIL cant get out of the bed except to go to the bathroom and then it’s a major ordeal for her. This has happened in just a few short weeks – since diagnosis. She is just exhausted to go 20 feet and back. She can’t even talk alot, it just wears her out. She’s completely bed ridden all of a sudden, she cant even walk to the kitchen. She has no pain, no swelling, no problem breathing, nothing other than total fatigue.(9/30/2010entry) She had a plastic stent put in on Monday and some fluids!!! We have a new woman in the house! On Sunday evening she wasn’t even able to lift her head off the pillow. Monday she got “rehydrated” and a plastic stent. WOW what a difference from rehydration. She came home, walked in the house, up the stairs around the house, got ready for bed all on her on. What a difference and we are so greatful! She’s in no pain, not sick and today she tells us she is even getting around the house and sitting on the porch for the second day in a row. We are on cloud 9 for her! (4/26/2011) Today shes moaning while she sleeps, hubby cant really even get her alert. Having a hard time getting her meds in her but getting them down in time, Not eating or drinking and really no communication from her today. Hospice came by for their every other day visit, but it was only an aide so she asked a few questions and left. This is so sad. The moaning is new and we just dont know what to expect next. (4/27/2011entry) Hubby called Hospice today and MIL had a better day than yesterday but of course no days are really good. Hospice is coming out tomorrow to help out even more. We also have the 24 hours being covered. We just want to make sure she is in no pain or discomfort. Yesterday was a glimpse of just what is ahead, it’s just so so so sad. (5/16/2011) Haven’t been on here in a couple of weeks. Lost my dear mother in law and finding some time now to reflect on this dreadful cancer. –isellure 9/5/2010.( no treatment,just stents,survive for 10months without treatment)

24. . I am kinda in the same situation myself and went 36 months before the cc traveled,now they say stage 4 and not much longerto go,my blood work and everything is fine I just have a problem digesting the food,its spread to my whole abdominal cavity and is puting presure on my colon,I am on the same roller coaster and am having another scan thurday to see if any of the bad cells have multiplied and then going to a differant hospital for 2nd opinion, I would like to see scans not just here reports from tests I live by myself and wish I was with your father even if it was the next mountain over.Thanks for honoring his request and I pray that he gets better again.–Mr.J 1/31/2008

25. My mum was diagnosed with CC in February 2010, at the age of 57, after signs of critical jaundice. Initial diagnosis was Stage IV, she got a stent placed to help with the jaundice and was sent home to die, as the doctors put it. After a lot of effort, we finally found an amazing doctor who disputed the diagnosis and decided to operate. My mum had a