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Fire….good luck with the upcoming consultation. I also wanted to mention that the periodic vomiting may reoccur intermittently or may become more consistent.. Is your mother in-law using enzymes to help aid in the digestion? Also, regular bowel movement is important. She may also want to move around a bit after ingestion of meals. Some foods are more difficult to digest than others are. And, of course everything should be noted and reported to the physician.
Please, stay in touch.
Hugs and love,
MarionThank you all so very much for the kind welcome.
We have taken her to RWJ New Brunswick and saw a radiation oncologist have an appointment to discuss Sirispheres. The problem there is they want the bilirubin under 1 and hers is holding steady at 1.4. From what I’ve read and what the doctors have said, liver directed therapies are the most effective.
Marions- she had her treatment on a Friday, and we found all this out later, said her stomach started to hurt Sunday but did not take anti-nausea meds, vomited twice on Monday, and then vomited her meal on Tuesday night. Said she had a fever of 100.9 and called the Onco service. They put her on an antibiotic. Claims her fever went up to 102 but in the 20 minutes it took to get to ER was back down to 99. While in the hospital for 5 days it never went over 99.
Lainy – thank you. It’s what we want to discuss with her. Have a decent quality of life for what you have left, or be sick for the remainder of time you have.
Pamela – My heart aches for your daughter and your family. She is so young.
Gavin – she has 2 plastic stents as they could not insert the more permanent metal ones. She has to go back every 2 months to get them changed.
Again, thank you everyone. Just knowing there are people I can turn to who have experience helps.
Hi FireEeyore,
Welcome to the site. Sorry that you had to find us all and I am sorry also to hear about your mother in law. But, I am glad that you have joined in with us all here as you have come to the best place for support and help. None of us here are doctors, we are a mix of patients, carers and loved ones who have all been touched by this disease in some way and we so know what you are going through right now.
That is good to hear you say that your MIL has an amazing team of doctors with her here and also that her bili is falling quite a bit. It sounds like the stents are workling as they should and my dad’s first symptom was also the jaundice, and for that he had a metal stent inserted.
As to your question regarding life expectancy with or without treatment, none of us can answer that for you. We are not doctors and even if we were, we still wouldn’t be able to answer that question for you with any certainty. Who knows what the future holds and how your mother in law will react to treatment?
I am glad that you have joined us here and hope that you will keep coming back. Please keep us updated on how your MIL does and if you have questions then ask away and we will do what we can to help in answering them. We are all here for you.
Best wishes,
Gavin
Hi FirEeyore,
Welcome to the site. To answer your question, my daughter, Lauren, age 25 was diagnosed with CC in Aug 2011. Her largest tumor was 17cm. x14cm.
She has had 10 rounds of chemo. Gem/Cis and 5-FU. Since then her tumor has shrunk to 13cm. x 11cm. She also has 5 tumors on the other side, the largest was 2cm. It has shrunk to under 2cm. and most of the others are invisible on an MRI.So chemo is working for her. So 10cm. is large but not the largest!! I have never heard of anyone having a tumor as large as Lauren’s. She is doing pretty well actually. She is not near as sick as many on this sight. Might have something to do with her being young. I am not a doctor, but I sure do think some kind of treatment would be better than no treatment. Take care and I am always willing to answer any questions you may have. Take care and good luck.-Pam
Hi,
10 cm is big but not uncommon for ICCA.
2nd opinion by interventional radiologist is highly recommended for the relative large size and the intolerance of GEM/CIS chemo. Radioembolization may be a good choice if it is not contraindicated.Chemo embo is another choice.
Chemotherapy at this point may not be the best choice at this moment based on the simple information you put on the message board here.
It is too early to talk about life expectancy since 69 years old is relatively young unless there are additional underlining diseases involved.
BTW,I am just a patient with ICCA like your MIL.
GOD BLESSDear Fireeyore, welcome to our most amazing family. I am sorry about your MIL and it becomes especially hard when someone doesn’t help themselves. I know as my Mom was like that. I used to think she was going to kill my Dad first!! Actually they both lived in to their 90’s. I do believe that there has been CC of 10CM. As for life expectancy with or without chemo you really need to talk to the ONC about it as he would have better knowledge knowing your MIL case. When my husband got to the end with a prognosis of 4 -6 months the ONC suggested Palliative chemo and Teddy asked him what it would buy him and he said, maybe a month. Teddy said no, it was not worth it. So, the best thing to do is talk to your MIL ONC. Best of luckand hang in>
Welcome to our site. Side effects to chemotherapy vary greatly; some people encounter minimal problems whereas others don’t do so well. When did your mother in-law receive her treatment? What lengths of time did she vomit and run a fever?
We have this saying on this board: “no one has an expiration date stamped on their feet” therefore, I don’t believe that anyone can tell you for certainty as to how things will evolve for your mother in-law.
Tumors of this size have been reported. Hopefully others will chime in real soon and share some of their thoughts with you also.
Please, continue to reach out to the great members of this site. Their combined wisdom, kindness, and understanding is unsurpassed and I know that you will receive the support you deserve.
Hugs and love,
MarionHi everyone! I am new here as my mother-in-law was diagnosed shortly before Christmas. She jaundiced, with a bilirubin of 19.3, and on CT and MRCP they found an intrahepatic cholangiocarcinoma of 10 cm. We have an absolutely amazing team of doctors for her including Christopher Gannon & Jason Rogard (Capital Health Systems Hopewell NJ) and Scott Kindsfather (hematologist & oncologist Lawrenceville NJ).
Due to the involvement of the hepatic vein and hepatic artery, another tumor on the other lobe of her liver and uterine cancer (even though it as the lowest stage possible and all removed due to surgery) she is not a candidate for a transplant nor surgery. To resect the tumor would mean removing 80% of her liver.
She has 2 stents inplace and her bili is down to 1.4!! She has had one round of chemo – Gemcitabine & Cisplatin – which totally knocked her out. Although we all are in agreement had she just drank the 8 glasses of water each day as she was instructed, she would not have had the problems of fever & vomiting. She was not given a full dose of either and the concensus was there would be little to no side effects. What you need to know is my MIL is her own worst enemy. She has never taken care of herself and how she’s gotten to 69 years of age, I’ll never know.
I have a few questions and don’t know if I post them here or in specific message boards.
1. Has anyone had experience with IHCC of this size?
2. Does anyone have any magic 8 ball that may give us an idea of life expectancy with or without treatment?Thanks for letting me tell our story!
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