Topic: My mother just diagnosed with CC

I am so glad to have found this site just days after my 71 year old mom was diagnosed. I have already learned so much. My mom has been suffering for two years with bile duct obstruction and in that time had 17 ERCP procedures for stent placement. In that time they took numerous scrapings, 3 CT scans, 1 MRI and numerous bloodcounts. They were baffled as to how many times she needed the stents replaced. Just before Christmas they did the last stent replacement and she was told that the next time they became obstructed that she would go in for bile duct reconstruction surgery. In January when she became sick again and went in to the hospital they scheduled her for the major surgery. Once inside, they found the cancer in the bile ducts and spots that had spread to both lobes of her liver. They removed some spots on her right side of liver but realized they could not remove them all. She was in the hospital for four weeks as she had some complications after the surgery with her heart and blood pressure and also ended up with an infection and drains coming out of her cut. She is finally home and this week we went to the cancer clinic where we were given the prognosis that she could have only 8-12 months to live. They want to start her on gemcitabine but only after she has recovered for 2 months from this surgery. So the timeline is that in two months she will go in for a CT scan so they can have proper markers and then start her on the chemo with once a week for seven weeks and then 3 weeks thereafter. There has been no talk of radiation and after reading some of the posts here I wonder why? Also two months seems a little long to wait for things to start. My mom is terrified of the chemo side effects but they said that it was gentle and she would have little side effects. Any input would be greatly appreciated and I will be on reading up more on everyones experiences and learning all I can. Thanks ,  Michelle

Re: My mother just diagnosed with CC

Some doctors dont like to do radiation on the liver. My doctor said something about it makes the liver swell and then that causes other complications. Apparently you have to have a stent in place before they consider radiation. Dr said it is difficult, but not impossible. You might want to push for it.

I dont want to alarm you....but I did not get chemo after my surgery. The oncologist i had said it was not helpful (now recent studies say it is), then when I finally got another dr to agree, it was past the 3 month mark. The oncologist said that it they dont give chemo after 3 months have passed since surgery since it would be too late. Now, I am not sure if this is correct. This nugget was given to me by the same oncologist who denied me chemo to begin with so I am not sure 1)she was being honest or 2) that she knew what was what. But you might want to check it. Like I said, she could be completley full of hot air. I so distrust her that I made my new surgeon promise that whatever happened I would never have to see, speak, or have any contact with her again! But I thought I might pass that 3 month info along and you could ask your dr. if this is correct and maybe bring up the chemo date a bit if it is.

Oh, and welcome to the site! I am sure there will be others along with the scoop on gemcitabine and what to expect. I truly am sorry that this blasted cancer touched another family and you had to find us.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: My mother just diagnosed with CC

Michelle, My heart and prayers go out to you and your mom. Lee and I just got news about his cc on Friday....I know nothing about it as well....please know that I am here in Arizona just like you...my heart breaking and scared beyond understanding....just knowing that there are others going thru this ordeal is comforting...many, many good thoughts and prayers are comin' right at you this very minute! Hang in there!

Heather

Re: My mother just diagnosed with CC

Dear Mickyma- Sorry to hear about your Mom's condition.  I guess you can call me an ole- timer when it comes to chemotherapy.  I started on Gemcitibine about 3 years ago and have tried many others since then.  Initial treatment with gemcitibine for me was not bad at all.  It also got an initial response of about 50% reduction in tumor size but only remained effective for me for a period of about 4 months.  Chemo has different side effects which individuals can experience or experience hardly anything at all. It is always given with pre-meds to lesson side effects but they should also give prescriptions to take home for nausea and something in case of loose bowel movements.  Drink plenty of water and eat even if you don't feel like it, to keep your nutrients up. Dehydration and malnutrition play a major part while doing chemo.  You have to eat and drink. If it means taking more nausea meds to do that, so be it.  Many  many times I would take nausea meds to keep my diet rolling.  I guess one thing I would consider and ask for is to have a port-a-cath put in if possible.  Its outpatient half day surgery.  and it will save your mom from having a lot of poking and prodding to have IV's started for every treatment.  Again that is one of those choices.  I personally started without one then quickly got it done.  Some people get the stigma once one is put in that's the end of the road.  Well, to the contrary I'm still around and it's been in for over 3 years and still working fine.  In fact I'm headed for Hawaii in a couple weeks for a vacation.  I have also had radiation called 3-D conformal external to the liver and some other areas.  In my case it was decided to be done as pallitive measures to relieve pain other wise my Onco said they try to avoid radiating the liver.  However if you do a search on this site you will see other radiation methods have been accomplished with positive results.  I sincerely hope your Mom maintains a positive attitude as I feel it is the number one weapon in fighting this disease.  When your done and feeling like why bother, is the time to kick it in to high gear!  I wish you and your Mom the very best outcome possible.
God Bless,
Jeff G.

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

Re: My mother just diagnosed with CC

Hi Michelle, from my understanding, gemcitabine seems to be the first treatment most doctors want to start with cc.  My husband Charlie (age 52)was diagnosed in May 07 and had 14 weeks of gemcitabine last summer.  I agree with Jeff about getting a port-a-cath.  Charlie wasn't offered one and we didn't know enough about it then.  He suffered pretty bad getting stuck so much and the chemo is really rough on the veins.  From his experience, he didn't have any major side effects until about halfway through.  Drinking Ensure or Boost helped him maintain his weight because the chemo affected his sense of taste.  The effects of this chemo are cumulative and toward the end of it, Charlie's face was very white, he didn't want to eat and he was extremely tired.  Keep an eye on the blood work the doctors do. There are medicines they can give to help with low white blood cell count or other problems.  After all this, his tumors did not grow, but they didn't shrink either.  Every person's tumors are different and how they react to medications also varies widely.

Charlie had 60% of his liver removed in 11/07 and just finished 5 weeks of the same kind of radiation Jeff mentions and oral chemo Xeloda last week.  We highly recommend getting 2nd opinions or more.  Charlie was told by his first doctor 6 months.  May will be 1 year and he's doing pretty good.  Wishing you all the best.

Carol

Re: My mother just diagnosed with CC

Thanks so much for all your information and kind words. I feel very fortunate that I have found this site and have a feeling I will be coming here alot in the next while.

That initial cancer visit at the clinic is so overwhelming and I already have so much more information from this site. I also have questions that next time I will be asking. Every day she is getting better after her surgery and it seems so surreal to think this cancer is growing inside her.

She is keeping a very positive attitude and loving being spoiled by all her kids.   (I was there last night giving her a back rub and my oldest sister is staying with her for a few days and helping out) My sister passed away at 31 years of age from a brain tumour and my mom keeps saying that she has had 40 more years of life than my sister and she is happy and content with all she has done in her life.

She does have some travelling that she would like to do this year and I hope she can keep her strength up to do so. We were given the impression that the chemo would help her do this.

Once again thank you and god bless, Michelle

Re: My mother just diagnosed with CC

Hello Mickyma:

So sorry to hear about your mom.  As others have mentioned, this website is wonderful.  I do not post often but read it daily.  My friend Ron was diagnosed with CC last June, underwent resection in August.  He was on Gemzar also and tolerated it very well.  He was on it for 5 months and has just finished it.  His six months CT scan was totally clear and his CA-199 test number was 10.   He was able to work and basically had zero side affects from it.  It did not alter his taste buds and he actually gained back the 25 pounds he had lost while on it.  It is strange how chemo has different affects on everyone.  From all that I have read, Gemzar is one of the easiest chemos to tolerate.  I hope and pray your mom will find this to be the case as well.

I will keep her in my prayers.  I pray for the CC board members every night.

Hugs,
Nancy

Re: My mother just diagnosed with CC

Just a little update as to what has been happening in the two weeks that mom has been home. She still has an infection in her surgical wound that is leaking lots of fluid and they say bile? She has lost another five pounds instead of gaining some weight and is now suffering great pain on the right side of her back up into her shoulder. Another month to go before they scan again and hopefully start treatment but she seems to be losing ground more than gaining. Not what we were hoping. Her spirits are still good most days but she has lost her appetite for even her favourite foods. A little disappointing but we hope if they can get this infection under control than that may help.

Michelle

Re: My mother just diagnosed with CC

Michelle,
Hoping for the infection to be subsiding and your Mom to be regaining her spirits.
Wishing for the absolute best coming your way.
Marions

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: My mother just diagnosed with CC

Hello everyone.
      First of all , I would like to say God Bless each and everyone of you and your families. My mother was dx w/ CC x 5 weeks ago after feeling a lump on her abdomen near her belly button. Long story short, she went in to get tumor resected and was told it metastasized to her mesentary wall and was givin a poor prognosis and they did not remove the tumor.No organs are involved( thank God) and she has no symptoms. she just finished her 3rd treatment of gemcetabine and feels great.Her blood work is low( wbc,rbc,platelets) but we have her on a great diet(organic foods, multi-vitamins, exercise, low sugar and lots of love, support and prayers)My mother is 63 y/o and is our  life and the glue to my family. I am A 32 y/o son who just loves his mother and reading all your posts gave me a pick me up.I have been depressed and have lost faith. I am havin a tough time and my poor girlfriend has to put up with me( but she has been awesome and supportive). Anyways, I am babbling and just wanted to send out my prayers to you all and tell you to keep your chins up, you truly are an amazing bunch. I am glad i found this site and if anyone has any good advice for me and my family, it would be greatly appreciated. we just love our mom and will fight like heck for her( she has the best attitude by the way). God bless again and good luck!

11 (edited by marions Thu, 27 Mar 2008 20:58:18)

Re: My mother just diagnosed with CC

stuuman,
so glad for you to have joined us although, sorry for the circumstances leading you here.
Sounds as if your Mom is responding well to the chemo regiment and the great diet and of course the love and support of a great son.  (That is you)  Hoping to hear of her continuted success with the treatment.
Marions

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

12 (edited by Rebecca1969 Sun, 30 Mar 2008 18:03:26)

Re: My mother just diagnosed with CC

My husband R. (64 years old) returned from a visit to Florida very jaundiced. We went to his internist the next day and were sent immediately to the hospital for tests. Initially, the docs thought they saw a mass on his pancreas and since his CA-A 19 marker was 5700...thought he probably had pancreatic cancer with a plugged duct. We were sent to a GI surgeon two days later who discovered as he did the endoscopy to place a stent in R.'s pancreas that the tumors infact were blocking his bile ducts, thus probably cholangiocarcinoma. Boy, have we been learning a lot. This started on March 10th, and after the PET scan revealed spread to his liver and lymph nodes...he was started on Gemzar March 24th. His oncologist said that his cancer is stage 4...but the value of staging was for dr.s to have a short hand to use when the consulted with each other re: cases. The doc wants to start R. on a second chemo agent if and when his jaundice clears up...The GI fellow put in plastic stents in case surgery was an option, but since surgery is not an option now due to the spread of the cancer, is going to put in metal stents on Tuesday, April 1 to hopefully help the jaundice improve.

R. is pretty tired and dozes between reading and TV...he is pretty dizzy when he stands up most days...we're not sure if that is the jaundice or the cancer...He has some suppositories for nausea that he finally used today and he reported that he felt somewhat better...He still gets up and comes to the table for his meals...but doesn't want to be on his feet too much.

One of the docs said that R.'s prognosis was 4 to 6 months...this seems hard to believe because he just doesn't seem that sick...and, yet, he surely isn't his usual energetic self. I am a school administrator with lots of sick leave and a wonderful staff that are keeping problems off of my plate. I have spent most of the month home with him, but have gone into work a few days to deal with some budget  and personnel issues. We are hoping for remission with Chemo, but if that doesn't happen, want, of course, to spend as much time together as we can.

Can any of you help me understand how this dreadful disease progresses? Will it become much more obvious to us as we get closer to the end? Are there some encouraging experiences of remission after chemo for stage 4 CCC?

I am so glad I found this site. Thanks to all of you in advance for sharing your wisdom, kindness and support.

Rebecca1969

Re: My mother just diagnosed with CC

Dear Rebecca,

I am so sorry to hear about your husband and wish I had some definitive encouraging news to share, but the truth is that this cancer is so rare that each case is different.  I started out with Gemzar and at first it looked like my cancer had slowed down, but then the next scan it sped up and spread to even more places, it's just so unpredictable.  There are a few on this board who have better experiences, others who have worse, each is individual.  Do your research, have you spoken to an interventional radiologist at all?  Your husband could be a candidate for sirspheres or theraspheres which might shrink or at least slow the growth of the tumors in his liver if that is where they are.  I am making that assumption based on your saying he was stage 4 as the liver is the most common place to spread.  I had sirspheres about 6 weeks ago, the jury is still out as to whether they worked.  When it appeared the Gemzar wasn't doing what they wanted I was placed on Oxaliplatin and Xeloda (an oral form of 5 FU), because of side effects they took me off the Xeloda and put me on the IV form of 5 FU.

My advice to you is to do as much research as you can, ask questions and more questions.  Get a second opinion, it is always wise in this kind of situation.  Most of all, value each day as the most important day of your lives. 

Barb (aka, the commander)

Re: My mother just diagnosed with CC

Dear Rebecca,  Sorry to hear of your husbands condition.  I can only  echo what Barb has said about this CC spreading.  I was given 6-12 months but just had my 9th year CT Scan today.  Will get a copy of report tomorrow and follow up. with oncologist Thursday.  I have had mets at several locations but seem to keep on trucking.  Not to paint a rosy picture I've had my trying times with chemo ,pain, and radiation.  The point is, during these years it has spread very slowly with me.  I can only say that attitude, hope and prayer has taken me this far.  More than not the Doctors have misjudged and underestimated the power of individuals will power to live. Get second opinions or third if needed.  Malnutrition and dehydration are a couple things to really fight against in my opinion.  CC is so individual like I've already said.  You can make it an opponent and fight or throw in the towel.  Until you have a base line Scan which you have, with a 3 month follow up to determine how aggressive it really is I would look at all possibilities. Chemo ,surgery, radiation.  You really just don't know. There have been members on this site who have had stents in for a long while and now have them removed and doing real good.  Hope goes a long ways.  Throw that positive mind in to overdrive.

God Bless,
Jeff G.

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

Re: My mother just diagnosed with CC

Thanks so much, Jeff and Barb! Wow, what encouraging information. I helps to remember that the power of the human spirit and will does factor into this somewhat uneven equation and that statistics are just attempts to average the aggregate experiences of many people.

Yes, the CC has spread to his liver and his lymph nodes...but I have heard of one other case in which a fellow had mets to liver and lungs and had a remission of 18 months, then more treatment and a remission of 12 months, and now is heading for his third round of Chemo.

We were able to get his second Gemzar treatment today and Xeloda has been suggested, but only if and when his jaundice subsides...hopefully, the metal stents that will be place tomorrow will speed this up.

I will research sirspheres and other radiation options...R. right now is very happy with his oncologist and when I initially suggested that we go to Fred Hutchinson or Virginia Mason in Seattle, he didn't want to...but, i will share the info on this forum with him and hopefully pique his interest.

I am so glad you all are here for moral support and good information.

Re: My mother just diagnosed with CC

Hello all with an update on my mom and hoping for some insight from you. Mom went back to the cancer clinic 2 months after diagnosis and her surgery to do a baseline CT scan. We were scheduled to go in a week later for the results and to discuss chemo start dates. She started to feel sick that week with what we initially thought was just the flu but her family dr started her on antibiotics just in case. We made it to the cancer clinic where they have postponed treatment once again because of her fever and being sick but I don't think mom is feeling keen on treatment right now anyway.

Two days later she just got worse and dad called me one morning because of high fever and pain she was having. We took her into emergency where we thought they might tell us her stent was blocked as the cancer clinic told us the tumour had grown in the duct around the stent. That is not the case, instead she had fluid pooling in her abdomen and all her doctor can say is that this is not good. He also said to my dad that chemo would probably not be a good thing for her either.

Would love to hear words of wisdom from you. Is this as bad as it sounds? Kinda feel like this has been taken to a new level and my dad is taking this news very badly. Thanks for your time and for all of you who post to this site, it has been a god send for me as it has such a wealth of knowledge.

Michelle

Re: My mother just diagnosed with CC

Hi Michelle,
Sorry to hear your mother is not feeling well. The flu-like symptoms and fever are sometimes caused by "tumor fever" - my mother had a fever every day at around the same time, but it went down with Tylenol or Advil. I guess it's just the body's way of trying to fight the cancer. Very important to make sure  your mother drinks enough water so that dehydration from the fever doesn't make her even more tired and sick.

As for the fluid in the abdomen, if it's ascites, it can be a bad sign but not always. Many people on this board have the fluid drained or take diuretics (again, make sure you keep hydrated on diuretics) and the swelling goes down. I would ask your other doctors if you have any, or get another opinion as to the options available. It's easy to get discouraged but there may be some answers out there.

Sorry I don't have the answers but I'm thinking of you and hoping for the best - I'm sure someone else here will have some words of wisdom for you.

All the best,
Joyce