update on my mom & seeking help
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Caroline…..I agree with what has been mentioned so far. Although, this link will include your very own posting, it also provides for some great inside to the question of cholestyramine:
http://www.cholangiocarcinoma.org/punbb/search.php?search_id=258262535It appears that your Mom faired well with the combination of acupuncture and other homeopathic treatments, hence I would continue to try to balance it. Does tomato juice work? Well, it is high in acid – there might be the reason for some to find comfort with the thinning of bile. I don’t believe that it would cause much harm to continue to find alternative means to ease her discomfort, but also be prepared to having to resort to medications. Ultimately it is “comfort” we are looking for.
Hugs,
MarionDear Caroline,
It must be very hard to watch this when mom has decided on no more chemo.
I’m with Lainy, I’d have a doc review her care now. Not treating the cancer does not mean she does not need care. It may be that that your mom is at a stage where stenting wouldn’t be done but palliative care will help with her pain, nausea and whatever other symptoms she has.
Dear Caroline, I know you are in a tough place. Jaundice is not good if left alone as it can cause some pretty vile stuff. Jaundice and high Bili count go hand in hand. Stents do not clear on their own. If not exchanged or cleaned out they can cause bad infections. My husband was on Morphine and at one point they switched him to Fentanyl and it did not work for him either. I hate to say this but I can only be honest and I feel that with all the things going wrong, if they are not fixed it can only get worse. With CC if things are not controlled including the pain it all just keeps getting worse which is why we always say the bottom line is comfort. If it was my Mother I would first ask the ONC about the stents, as clean stents will alleviate the jaundice right away. I would also ask for something else for pain or it will really get out of hand. Definitely a call to the ONC tomorrow is in order. There comes a time in life when we sometimes have to trade places with parents. It is really hard but you need to make the calls now. I don’t put much stock in homeopathic against CC. Right now to try and get Mom healthier the stents need to be changed. Best of luck to you and to your Mom.
Wow, I don’t know the answer to most of your questions, but in my experience clogged bile drain tubes don’t come unclogged. They have to be changed out. Wish I had more info for you. Sorry your mom is going through all this. It’s rough.
Lisa
Hi everyone,
A lot has happened since my mom stopped the clinical trial on Cabozantinib at Mass General. My mom has decided not to receive any more chemo. She was recommended radiation for her swollen lymph node by her neck, which also got bigger during the clinical trial (as did her primary tumor). She decided to hold off on that too because other than the sight of it scaring her, it hasn’t been causing much pain.
Since March, it’s been a constant juggling act of putting out small fires (sorry to mix my metaphors). Constipation? Check, and finally controlled by acupuncture and regular intake of miralax and prune juice. Nausea? Check, and controlled by acupuncture. Loss of appetite? Check, and controlled by acupuncture & megace. Pain? Check, and still struggling. She tried the Fentanyl patch, which was a disaster. She’s now on 40mg of OxyContin 3x day and Oxycodone for breakthrough pains.
The latest challenge is that she’s jaundiced. Her bilirubin is 7.4. She’s not itchy, and her urine/stool colors come and go from dark/clay colored to somewhat normal. She’s more jaundiced on some days than others. We went to Urgent Care at MSKCC in NYC on Monday at the recommendation of her local oncologist at MSKCC in Basking Ridge. But they refused to do any procedures on her because they said the risks outweighed the benefits, AND, she’s not getting any more chemotherapy. They said being jaundiced is not that alarming and neither is a high bilirubin number. So even though she’s still very yellow, they sent her home without any procedure after keeping her overnight unnecessarily.
I have been with my mom since March, and it’s so hard to see these rapid changes. The growth by her neck, her extended stomach (we thought it was ascites but it turned out the ascites was quite minimal — it was mostly her cancer), and now her jaundiced face and eyes — these I see every day and I’m scared for her while at the same time determined to do everything I can to help her fight and stay healthy. When we were getting discharged yesterday from the hospital, it felt like we were being turned out and away because my mom didn’t want any more “conventional” treatment that they have to offer.
So I decided to come seek help from you all. Do clogged stents ever get unclogged on their own? What does it mean that my mom’s jaundice comes and goes sometimes (she’s not as jaundiced when she wakes up in the morning, for example)? I’m looking up homeopathic cures for jaundice (such as drinking cooked tomato juice first thing in the morning). Could those work in my mom’s case? Also, what are your thoughts on Cholestyramine? What were some of the benefits from taking it, and what were some of the side effects?
Thank you. Any advice, thoughts, and answers based on your experience would be greatly appreciated.
Caroline
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