lindar
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I haven’t been on the discussion board for a while as my husband was quite ill but I want to update you on what has happened. My husband’s latest MRCP did not show a blockage so the oncologist and those with whom he consulted came to the conclusion that the tumors were compressing the bile ducts and no further treatment would be possible. He said the bilirubin level would continue to rise and we should make an appointment to discuss my husband’s care. I told the doctor that I would like to try a round of antibiotics and also Ursodiol (as suggested by Marion). He said that he did not think either of these drugs would have any effect but he was willing to prescribe them as he didn’t think they would do any harm. He also wanted to drain my husband’s ascites but I convinced him to try a diuretic first.
Although my husband was extremely ill during the last couple of weeks, the fever he has had for two months completely disappeared after a few days on the antibiotics. The diuretic was effective as his abdomen returned to normal size. About three days ago, my husband began to feel much better. Instead of sleeping all day, he began checking his email, watching football, and reading during part of the day. Today he had a blood test and the doctor just called me with the results. Bilirubin has gone from 3.7 to 3.4 and there are also small reductions in the other liver function tests.
Although we have a long way to go, I’m encouraged by these results. When we met with the oncologist today, I could tell he was surprised. I think he is an excellent doctor but sometimes it pays to think outside the box and I’m glad he is willing to listen.Thank you all for the support and a special thanks to Marion and Percy for these excellent suggestions. I will first await the results of today’s MRCP in the unlikely event that it reveals a blockage that can be stented. If it does not, then I plan to have another talk with the oncologist to discuss the possibility of Ursodiol as well as some of Percy’s suggestions. We had been discussing radioembolization at Northwestern but that is no longer on the table as they won’t accept patients with bilirubin over 2. However, I will contact Dr. Moeslin to see if he has any other suggestions. Although he isn’t feeling well at the moment my husband still has a strong will to live and wants to examine all possibilities.
Clarem, it’s wonderful that your husband is raising money by doing the run at this time. My mother died almost three years ago after a long battle with kidney disease. We were very close and when the first anniversary of her death approached I wanted to recognize it in a special way. I decided that each year I will try to do something positive in her name. She loved animals so the first year I sponsored the care of a dog for a year in a no-kill shelter. She also cared about children so the second year I made a donation in her memory to a children’s hospital. I’m now beginning to think about what I want to do this year. I’ve found that instead of dreading the anniversary of her death I now look forward to doing something positive in her memory.
It is my understanding that no new patients will be accepted into NIH clinical trials during the shutdown and that no new research grants will be awarded. I have contacted my Congressional representatives about the potential effect of the shutdown on cancer patients and encourage others who have similar concerns to do also.
Hello. I’m happy to hear you are doing so well. Unfortunately, recurrence is fairly common after surgery but there are factors (size of tumor, lymph node involvement, etc.) that can help predict whether this is likely in your case. I suggest you discuss this matter with a doctor thoroughly familiar with cholangiocarcinoma who can give you some specific guidance.
Hello Danna. I’m sorry you are feeling so down. My husband was diagnosed with cholangiocarcinoma two years ago. He had a resection but the cancer returned last September and he has been on chemo ever since. He tends to be an optimistic person by nature but we have both had our bad times too. In addition to being a patient, Terry is also a clinical psychologist. He always says that the best way to deal with depression is to force yourself to do something. It doesn’t have to be anything significant – perhaps a walk around the block, a phone call to a friend, making a pie – whatever you feel you can handle at the moment. You have made a major step toward feeling better by reaching out on this discussion board. If you keep feeling down, don’t hesitate to discuss it with your doctor as there are many medications that can help. Take care and I hope you feel better soon.
Thanks for sharing this. Some of the early immunotherapy trials for pancreatic cancer have been very disappointing and it is good to see some positive results. I am very hopeful that there will eventually be an immunotherapy treatment for cholangiocarcinoma.
Kristin – You are so wise not to lose hope. Those timeframes the doctors give are simply averages but each individual responds differently. My husband also had a resection with clean margins but the cancer recurred ten months later, in September 2012. One year later he is still working, taking walks, and enjoying his life. During the past year he has resumed playing guitar and written a novel. Chemo has been challenging at times and the doctor has had to make changes in regimen on occasion but we refuse to give up or to let the cancer take over our lives. It sounds like your father has a very positive attitude and that will be of great help to him. I have found this board a great source of information and support and I know you will too. Linda
Thank you for reminding us of this Marion. It’s so important that we let our legislators know how important these issues are to cancer patients and their families.
Lady Linden – When you read the entire list of possible side effects, chemo sounds pretty awful but no one has all the listed side effects and some people have very few or none at all. My husband has been on chemo for almost a year and sometimes it has been difficult. However, we’ve spent time with friends and family, gone to concerts, taken walks and had a pretty good time together despite the obstacles. We know that chemo won’t cure my husband but we hope it will extend our time together and we haven’t given up hope that something more effective (perhaps immunotherapy) will be available soon. You are the only one who can make the decision about whether to try chemo but don’t let depression make the decision for you. Get all the facts, talk it over with those who are important to you, and then make the decision that is best for you.
Welcome! My husband was initially accepted for the FOLFIRINOX trial last fall but was later determined to be ineligible because of prior radiation. His oncologist, in consultation with Dr. Catenacci, decided to treat him with FOLFIRINOX even though he wasn’t in the trial. He was on FOLFIRINOX for about six months and then on FOLFIRI for a while longer. His tumors did not shrink but they did stay stable for quite a while. Side effects from FOLFIRINOX can be tough but my husband did pretty well and was able to continue working throughout the treatment. Unfortunately, he had a bad liver infection in June that resulted in a change to a treatment that didn’t work very well. He is now back on oxaliplatin with Xeloda which we hope will work better. We only met with Dr. Catenacci a couple of times but liked him very much. I also had a chance to speak with him at the ASCO conference and he indicated he is doing some additional research in cholangioarcinoma. I hope your treatment is very successful.
My husband’s doctor has talked about this possibility also. Thank you Percy and Jason for posting such helpful information about it.
That’s an amazing story. I have a little collection of CC success stories and Ben is definitely on my list. Best wishes to you both!
I wanted to provide an update on my husband’s condition in the event anyone researching ascites reads this thread in the future. Although it was my understanding that the doctor put my husband on antibiotics because his scan revealed ascites, I later learned that the scan also revealed signs of infection, possibly pancreatitis, and this was the reason for the antibiotics. Apparently the infection caused his albumin level to drop far below normal and this caused a host of problems. After 17 days of antibiotics, he is greatly improved. He has no fever and his blood pressure has returned to normal. His bilirubin had risen to 3.4, causing some jaundice, but it has dropped to 1.5 and the jaundice is all gone. Almost all of his digestive problems are gone and his appetite has returned to normal. I won’t know whether there has been any change in the ascites in his abdomen until the next scan but the fluid around his ankles is now gone. The albumin level has been rising slowly and is now only slightly below normal. All of the tests he had in the ER were negative for infection so it is fortunate it showed up on the scan. I plan to take any future fevers very seriously.
