Topic: Intrahepatic Cholangiocarcinoma

First I must share that when I started writing on this site I altered a few details about my story. Reason being I was afraid that my local doctors would discover I was second guessing them but since we sort of left them it no longer matters. So I will start by telling you my MOM's story (not my sister's) My mom age 64 who by the way is the healthiest person I have ever know AND who is a marathon runner was diagnosed with intrahepatic Cholangiocarcinoma. We found out during a routine physical. She had NO symptoms other than a little fatigue. The blood tests came back with elevated liver counts and were done twice. She was not yellow or Jaundice, does not have hepatitis or cirrhosis  . She had a 7cm tumor growing on her liver.  Trying to keep this story short is hard so if I miss details that any of you need to know just ask I am happy to share anything you would like to know. Through this forum, I found 2 users who's story caught my attention (Wayne's and jathy's) it is because of those 2 kind amazing people that I sit here in the ICU at Barnes Jewish Hospital with my mom after  Dr. Chapman removed her tumor (which we were told by 3 doctors...one of which was from Dana Farber that the tumor was inoperable) I am happy to report that so far so good! I WANT PEOPLE TO KNOW THAT THIS CANCER IS SUPER RARE AND THIS IS THE HOSPITAL TO GO TO AND DR. CHAPMAN IS THE DOCTOR YOU WANT!!!!!
The other option was chemo which we know does not work well with this kind of cancer offering her a year or two if we were lucky. Yes it is risky but the alternative stunk so we took the risk and am so glad we did.

Re: Intrahepatic Cholangiocarcinoma

Well, we are so happy to meet the real Daisy. Your story sure has a Happy Ending and I am so glad your Mom is doing so well. For sure we all know how rare this Monster CC is and Dr. Chapman has quite a fan club here. You did good Daisy girl! What is the plan now for treatment/follow up? So happy for you and your Mom and please keep us updated as we truly care. Please don't EVER be afraid of anyone ever again. Not worth the stress.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

3 (edited by marions Mon, 05 Aug 2013 23:21:22)

Re: Intrahepatic Cholangiocarcinoma

Daisy.....love, love, love your story. I agree, experts disagree with their approaches and we need to make sure to consult with more than one or two physicians. I wish for a quick and uneventful recovery from the surgery and for your Mom to regain her strength quickly.  Congratulations, Daisy and please stay in touch.
Hugs,
Marion

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: Intrahepatic Cholangiocarcinoma

Daisy,
I am so glad to hear the good news. Praying for a smooth recovery for your Mom.
Lisa

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: Intrahepatic Cholangiocarcinoma

Daisy-Everyone knows I love seeing my hero's" name on the CC site as the "go to guy", but being the humble person you are, you left out the part where you saved your mom's life. Your mom's journey is less than a month in the making and you never took any negative opinion as an option, you didn't take a try and see approach, you found HOPE and answers in such a short time. Daisy you and your family are amazing!!
Lots and lots of prayers for mom and all of you-Cathy

Re: Intrahepatic Cholangiocarcinoma

While Dr. Chapman is our hero Cathy you have been our Angel. Cathy otherwise on this site know as Jathy has been here with us at Barnes holding our hand the entire journey. If not for Cathy and Wayne's story I would not be sitting here on the sofa writing to you all as my mother recovers form her successful liver resection:) any of you coming to Barnes should take the time and talk to Cathy. She is has lived it personally and has a wealth of knowledge not to mention the KINDEST person I have ever met and today a dear new friend in my life.

Mom's update....day 2 she woke up and looked a bit weak, they thought she may of needed a liver transfusion but ended up not needing one. She walked today did a few stairs and went to the bathroom on her own....LITERALLY....then got in trouble because she was suppose to ask for assistance. She is in a lot of pain but as the day progresses she is gaining strength. My mom is a marathon runner and has never had a sick day in her life. The nurse just came in and she now has a fever...and her blood pressure is up a bit. I will keep you all posted. Thank you all for your prayers and support.

Re: Intrahepatic Cholangiocarcinoma

Daisy first of all YIPPEE on your Mom's surgery and so good to her of her progress. Please keep us in your loop! Still sending prayers her way for a speedy recovery.

You got to meet Cathy!! I am always telling people on here what a thrill to meet other Members. We all have such a special bond. The fact that Angel Cathy came and met you and sat with you just shows how special she is.
This is a bond that will never be broken. I wish I could have met you both!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Intrahepatic Cholangiocarcinoma

Daisy...it's a bit of a roller coaster at first...you brought back the memory of my first few days and trying to get into my bed when I first got home (and out of it!)...excruciating, but little by little it gets better.  I also had a roller coaster ride with blood pressure going way up and then way down.  I just had my 3 year scan and so far so good.  I did no chemo as my doctor said that statistics didn't bear out chemo being effective at that point (3 years ago).  I also had clear margin.  Looking forward to hearing the progress of your mom and so nice to know that Cathy has been with you through this!  You are in my thoughts.
Kathy

Re: Intrahepatic Cholangiocarcinoma

Daisy....it is not an easy surgery to recover from - many of us understand too well.  The good news is that your Mom is in great physical shape hence, she will be a bit better each day.  I am sure that it has been mentioned already, but the "pillow" held against the chest while caughing helps greatly. 

Thanks for coming "truly" clean with us and also mentioning our great Cathy and the immense support she has been.  It does not surprise me - we love her too.

Please continue to share with us.
A tidal wave of good wishes for a speedy recovery is heading your Mom's way.
Hugs,
Marion

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: Intrahepatic Cholangiocarcinoma

Ms. Daisy-What a great way to start my day, to wake up to kind words. I am alive because of the kindness of two complete strangers, so for me to able to repay and pay it forward is probably the most humbling expierence. To be able to pass on life saving/changing info is the most amazing feeling. Once again "until you walk a mile in there shoes" applies and you will fully understand cause you will do the same!! I have had the best of best times with Carmen and Rose! Thanks for sharing your family !!!
Lots of prayers for all to keep getting better!!-Cathy

Re: Intrahepatic Cholangiocarcinoma

Hello All,

My moms recovery has been tough. She has to use a catheter to urinate because they say her bladder is asleep. She is in lots of pain still. This is a women who up,till 3 months ago ran 30-40 miles per week and now she can barely shower with out assistance. I am sure she will eventually recover but then she will be faced with 6 months of chemo. Yes I found Dr. Chapman and yes the 7inch tumor was resected but the final path showed vascular involvement and 4 lymph nodes were involved. The cancer is locally advanced what ever that means. We were hoping for clean margins. The cancer that remains is microscopic so we have to hope the chemo will work. Now I am sure we are in better shoes because we are no longer dealing with a tumor I just hope we extended her life to experience mor than just chemo radiation and never ending hospital visits.  She said if she knew that she would be in this kind of pain she never would have done it. I told her we will see if she feels the same a few years from now. During child birth I said I would never do it again and I did so hopefully thus will be a distant memory and along the way we met our ANGEL named Cathy who after all she went through lives life to the fullest and is one the happiest people I know.

Re: Intrahepatic Cholangiocarcinoma

Dear Daisy, I am so sorry to read that Mom is in that amount of pain. Have you told the ONC? Unfortunately this surgery requires a long slow recovery and perhaps she needs a stronger dose of pain Meds. I like your comparison of having a baby. When I went in with my 1st I kept telling myself if so many women keep doing it, it can't be that bad! I am so thrilled you got to meet Cathy and I hope you 2 stay in touch. I would call the ONC and either get her Meds increased or changed. Hang in there and Be Strong!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Intrahepatic Cholangiocarcinoma

She will barely take pain meds because they told her that is a reason she is having the issues with urinating. The more pain meds the less walking she does and then her lungs start to fill with liquid. It's a double edge sword. And as for Cathy yes we will always keep in touch we are so much alike in so many ways and I miss her terribly. Her being there for my mom and dad when I had to return home is a gift like none other. I know god sent her to me and I plan on keeping her:)

Re: Intrahepatic Cholangiocarcinoma

Daisy, so sorry about the pain Med junk. In my feeble mind I am thinking there has to be something! Even to just take the edge off. Gee, I never heard of pain meds stopping the flow of urine. Could she even take an over the counter pain reliever? Gosh, I just feel so bad for her. When one is in that kind of pain it makes the healing process slower as all the energy is being used towards pain. My best is going out to your Mom.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Intrahepatic Cholangiocarcinoma

Some pain medication, such as morphine, can cause urinary retention.  Maybe she needs a different med.

Re: Intrahepatic Cholangiocarcinoma

Daisy....Your poor Mom is the first on our site suffering from drug-induced urinary retention.  My heart goes out to her. Hopefully tomorrow will be the day for her bladder to function again. It is unfortunate that the true extent of the disease can only be determined by the eye of the surgeon.  As it happened in your Mom’s case and that of many others, it is disappointing that the disease originally thought to be confined instead is in a more advanced stage than anticipated. 
It is of some consolation though that the tumor burden has been removed and that your Mom may respond very well to the upcoming chemo treatments.  The odds are in her favor, dear Daisy.
It warms my heart to know that our dear Cathy has supported you and continues to stand by your side. She truly has become your Angel in this time of need. 
I wish for tomorrow to be a better day for your dear Mom and for you.
Hugs,
Marion

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: Intrahepatic Cholangiocarcinoma

Update on my mom...today we are 2 weeks and a day out from surgery. She was released from the hospital yesterday after the put a new JP bag in before she left. She is staying at the hotel nearby the hospital. We expected her to be home by now but not complaining we are just grateful that she is recovering. She no longer has to self cathoder and her infection from the incision is healing nicely. She is being spoiled rotten by our new friend Cathy and her family. They took my mom out for lunch today and she actually ate French fires which she never eats LOL!! She walked a couple of miles the other day when she escaped the hospital and today managed to paint her toe nails. So all in all things are good. That is my opinion if you ask her she is still in lots of pain but that is to be expected. Now if the JP bag drys up she will be good to come home and we will then begin our journey with chemo. I am hoping that after the recovery from the surgery which at first was pretty rough chemo won't seem too bad...

Re: Intrahepatic Cholangiocarcinoma

Good report Daisy, and every few days I am sure things will get better and better. Wow, I think we could all use a little comforting from Cathy, she is something else. I am also sure you are a lovely lady as well and that is a good reason for the 2 of you to have become friends. Thanks so much for the update and wishing only for good things to follow.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Intrahepatic Cholangiocarcinoma

So happy to read your latest post. Amazing what a couple days of recovery can do. Sounds like your Mom had a pretty good day.
Hugs
Lisa

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