Eli
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Melissa, I am very sorry to hear the news. I hope things turn for the better for your mom.
My grandma had a stroke while undergoing chemo for uterine cancer. Don’t know what kind of chemo it was. It was back in the early 1970s.
Hi Art,
Welcome to the site. Nice to meet you but sorry it has to be here.
Lack of symptoms until late stages is, unfortunately, very common. Most of our members didn’t have any symptoms prior to their diagnosis.
Art, you mentioned Chinese and American studies about one particular genetic abnormality. Can you share the links to these studies?
Welcome again. You came to the right place for support from people who truly understand what you are going through.
Best wishes,
Elimoontje,
I’m curious if your husband has done or is doing any complementary or alternative treatments?
Things like special diet, vitamins, supplements, herbs, alternative medications and so on.
Thank you again for sharing your great news.
Rather than start a new thread I will tack this on here. It’s the same subject.
Adjuvant Therapy Beneficial in High-Risk Biliary Tract Tumors: Meta-Analysis
http://www.medscape.com/viewarticle/762919
You may need to create a free Medscape account in order to read the article.
Your sister is AMAZING!!!
Good to hear that living donor program is on the list. Not to belabor the point, but… with meld score of 7, it should be at the *top* of the list.
Tiffany, ask Dr. Chapman what he thinks about living donor transplant. It’s a very difficult subject to breach with the family members. You need to discuss it with doctors first.
Marion, thanks for clarifying. When I said that insurance approval of maintenance chemo could be difficult to obtain, I was talking about resected cases.
If the 86 year old gentlemen didn’t have a resection, it’s obviously a very different situation from insurance point of view. The approval of maintenance chemo could be very routine in his case.
Pam and Lauren,
Sending tons of positive thoughts and wishes your way. Fingers crossed for a great scan tomorrow.
Hugs,
EliHi Percy,
I asked our oncologist about maintenance chemo when my wife finished adjuvant Gem/Cis. I asked specifically about Capecitabine (Xeloda) because it’s done at home.
He wasn’t open to that discussion at all. He was quite dismissive. He said he wasn’t aware of any evidence to support maintenance chemo in CC patients. If I recall correctly, he said something to the nature of, “show me a study supporting it… then we can talk”. Of course, I don’t have any CC studies to show him.
Assume for a moment that you can find an open-minded oncologist who is willing to prescribe maintenance chemo to CC patient in remission. I very much doubt that insurance will approve it, considering that we don’t have any evidence from the clinical trials. Our government insurance is highly unlikely to cover it.
You can think of maintenance chemo as a weak form of adjuvant chemo. As you know, the evidence to support adjuvant chemo in resected CC patients is not very strong. We don’t have a single Phase 3 randomized trial to support it. We only have small, non-randomized Phase 2 trials.
This may change once UK BILCAP trial is completed. If BILCAP trial proves the benefit of adjuvant Capecitabine chemo, Capecitabine will likely become the new standard of care in resected cases. If that happens, the next logical step would be to try Capecitabine as a maintenance chemo.
Percy, I agree with your line of thinking about maintenance chemo. I think it makes perfect sense. The only catch is, we need evidence specific to CC.
My very best wishes to you as always.
Hugs,
EliThe study that Gavin linked was done in a dish.
17-AAG is the name of the drug. Heat shock protein 90 (HSP90) is the target of the drug.
17-AAG is also known as Tanespimycin. It was tested in a number of clinical trials:
http://clinicaltrials.gov/ct2/results?term=tanespimycin
None of these trials involved cholangiocarcinoma.
This article says that Bristol-Myers (pharma company) has abandoned development of the drug:
http://www.myelomabeacon.com/news/2010/07/22/tanespimycin-development-halted/
Lynn, welcome to the forum. I am sorry that you had to find us.
Have you tried nutritional drinks like Ensure or Boost?
My wife was stented for 10 weeks before her Whipple surgery. She had trouble with most foods, but she was able to tolerate Ensure reasonably well. It’s a complete nutritional drink, meaning it contains most nutrients that our bodies need.
I hope your husband is able to have the surgery. My best wishes to you both.
Eli
ADDED: If you are going to give Ensure a try, don’t drink the entire bottle at once. It’s just too much. Try one third of a bottle and see how it goes. If it tastes too sweet, add water.
Are doctors aware of extreme itching?
Are they working to bring down the level of bilirubin?
If not, you need to see them ASAP. If she doesn’t have a stent, she might need one. If she does have a stent, it might be clogged and in need of replacement.
If doctors are aware of it and are staying on top of it, these previous discussions might be of help.
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=6515
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3379
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=5953
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=2168
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=2001
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=1315
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=1273
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=296
Please note, these discussions are about temporary relief from itching. You need to seek professional help to treat the underlying issue (high bilirubin).
