Mom recently diagnosed with CC
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ronidinkes, thanks for the info. I’ve moved back to Houston since Jan and go back and forth. 90% of my time is spent taking care of my mom and keeping her spirits up with my crazy sense of humor. My brother and sister live in town as well but I rather take care of her myself since she’s more comfortable with me. I just can’t bear leaving her, she’s my best friend and my first love. My Hubby is a gem, very considerate and is helping out with our 8 year old son back home.
Tiff1496 how has you experience been with Dr. Javle? My mom is to go every two weeks for chemo, we find more out next week after she has an endoscopic u/s. If you can please let me know what to expect in terms of chemo that would be great!! Thanks again everyone.
I’m so sorry to hear about you Mom. I’m glad you have found us. We also see Dr. Javle @ MDA. He is a wonderful doctor, and will do everything he can to help your mother.
Dear MyMomMyLife:
I am here if you ever need to talk. My mom just passed on 3-17. She was diagnosed August 2010.
I have a wonderful caregiver, Her name is Linda, she took 24/7 care of my mother until the end.
She respects the patient’s wishes and is now available.
Her phone number is 443-310-0460.
She is honest, reliable and I love her. My mother loved her and my mother was one tough cookie!
My mother never went into hospice. Hospice came to her, she wanted to pass at home with her dogs, in her own bed on her terms and Linda made that happen.
Good Luck and much love,
RoniLinda has been with us since mom’s Whipple in August 2010, she is a gem of a find, and she is willing to travel.
Please feel free to call her, she is ready to help you!
Any questions you can call me at 443-465-9529
My Mom My Life, EXCELLENT, Dr. Javle is one of our very best! Isn’t it amazing how quickly we learn and jump in to action….that we never asked for? You are so right about attitude, that anad HOPE are our best RX. Please keep us updated on Mom’s progress at MDA. Wishing you the very best!
Thanks Lainy for your kind words, and PCL1029 I took your advice and got my mom into MD Anderson last week, we finally saw a surgeon named Dr. Curley today who has advised us against surgery. We also saw an Oncologist named Dr. Javle who thinks chemo is the best route right now.
She is stable, I capped her biliary catheter over the weekend; they were changed last week since one was blocked (no more bags to carry around) and her pain is manageable. She has an endoscopic u/s scheduled for next week and a f/u with Dr. Javle on Thursday. I’m staying positive and praying for her. She has a strong faith and positive outlook and that will definitely help her during this tough time.
MyMomMyLife, welcome to our exraordinary family, but I am sorry you had to find us. I am also very sorry to hear about your Mom but you have come to the right place.
I totally agree with PCL to try and get an opinion from MD Anderson. They have treated many CC patients and one of our most often suggested places to go for treatment. Also like PCL said we love the word surgery as so many are not able to have it. It is true that Doctors do not know what they will find until they get in to the area so it will take a ton of patience and strength on your part as the waiting is the worst. I know you will hear from more people, it’s a tad slow on the weekends. PLEASE think about MD Anderson even if only for a consult. Please keep us updated as we all truly care.Hi,
The chance that can have surgery is better than to win a lotto for the CCA patients like me who is in the 34months of fighting the intrahepatic cholangiocarcinoma journey. No matter what they find out,your mom will have the complete picture of the disease state of the cancer to help in the journey of fighting this cancer.
It is also a good idea to have a 2nd opinion from MD ANDERSON since you are so close to the #1 ranking oncology medical institution in the world.
Other caring people will join in to support you emotionally and provide information you will be needed at this time of uncertainty.
God bless.We found out last week that my 60 year old mom has been diagnosed with CC. She had been sick since Jan, initial symptoms were severe jaundice, itching, burning which led to her being admitted in the ER for removal of stones followed by removal of her gall bladder. We brought her home mid Jan thinking the worst was behind us not knowing that her symptoms would worsen
Her bilirubin spiked up to 12, the GI doc had to go place stents in twice which didn’t help with the draining of the bile. He performed two ERCP’s; the second showed narrowing of the bile ducts which led him to believe that she might have CC. He did a liver biopsy and some brushing via the ERCP which came back negative. Her jaundice improved when she had two special procedures done to insert two drain bags on either side of her liver. I brought her home mid Feb with no diagnosis since the findings were negative and we booked two appts with specialist for second opinions. Bilirubin is down to 3.5 but her alkaline phosphate is at 350.
The second GI doctor thought she might have contracted a virus when she had traveled aboard to South Asia last year but the stool came back negative for any parasite. He then referred her to a liver transplant surgeon after he had discussed her case with the tumor board. The Transplant guy told us after seeing her CT scans that she indeed does have CC and that he has to operate on her and remove 1/3 of her left liver next week. He has also informed us that if he thinks the tumor has spread that he won’t be able to do anything and will have to close her up.
As you can imagine this news has shattered my world. She has always been there for me and I can’t imagine life without her. I’m trying to find as much information as possible but have so many questions. The Surgeon we are seeing is at Memorial Herman Medical Center in Houston. She has improved a lot since Jan but the drain bags cause a lot of discomfort to her. I am scared to death as to what they will find once they will open her up for the major surgery. Please keep her in your prayers and it would be much appreciated if you have any advice or suggestions that could help me and my family at this difficult time.
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