Thanks Marion. I thought you were out of town or I would have contacted you in the first place. It's possible they made some errors in entering the information or used an incompatible browser. I just wanted to report the feedback I received in case there was a problem with the site.
In my husband's obituary, I requested donations to the Cholangiocarcinoma Foundation in lieu of flowers. A couple of people have told me that they have had trouble making on-line donations. They said they were unable to indicate that the donations were in memory of my husband and are concerned that I will not receive notice of the donations. Have there been problems with the on-line donation site? I'm not sure who I should contact about this. I want to make sure I receive a list of all donations so I can thank the donors. Thanks.
Ladies - Your comments have been very helpful to me. Tomorrow will be two weeks since Terry died. The first week I did very well - lots of people around and so much to do. This week has been harder. I've discovered the best thing is to just figure out how to get through each day and not think too much about the future at this point. I've joined a bereavement support group too - all people who lost their husbands or wives to cancer - and it has been helpful to talk with others who understand. It's hard but I know I will be OK.
Wishing you the very best, Lainy. You provide so much support to everyone on this board. Now it's time to focus on taking care of yourself. Remember there are many people here who care about you. Linda
Thank you so much for your kind responses. We have planned a memorial service and reception at the beautiful Morton Arboretum, one of Terry's favorite places. In the event anyone would like to read Terry's obituary, here is the link:
http://www.toonfuneralhome.com/fh/obitu … h_id=12920
My husband Terry died this morning. Terry was a vital and extraordinary man. He played classical guitar, wrote a novel and raised orchids. He was a gourmet cook and he loved hiking, animals, nature and travel. He was one of those rare people who actually loved his work and, as a neuropsychologist, he helped many people throughout the years. He was diagnosed with cholangiocarcinoma in October 2011 and he never let the disease destroy his spirit or his dreams. He loved life and he lived it well until the end. His death was peaceful and serene and I had the privilege of holding him in my arms as he passed away.
Hello Michele. I'm so sorry things have reached this point for you. I am in almost the exact same position and it is the hardest thing I have ever experienced. I love my husband so much and it breaks my heart to see him the way he is now. I know you must be feeing the same way about your husband. I think this will the greatest challenge we ever face but we will get through this somehow. Please take care of yourself. Linda
Thank you Willow and Kris for the helpful responses. They have put him on Lactulose and it is helping a great deal. His amonia has decreased from 115 to 49 and his memory and lucidity are greatly improved. At my request they have taken him off Dilaudid as it seemed to cause very vivid dreams that resulted in confusion. Fortunately he has only mild pain at this point that is easily controlled by milder forms of pain relief. I hadn't thought about the possible relationship between draining the ascites and the lower blood pressure but that may be part of the problem.
Hello all. As I said in my previous post, my husband is not doing very well but we are trying to make him as comfortable as possible. I'd appreciate any advice you might have on a couple of issues.
First, he had ascites drained twice and the decision was made to insert a permanent drain. Unfortunately, due to high amonia, the effects of anesthesia, and pain medication, he tore the drain out the same night and the doctor doesn't want to try it again. However, the liquid in the abdomen is currently draining through the hole where the drain was into an ostomy bag and this seems to solving the problem for the moment. Has anyone else experienced anything like this?
Second, he is experiencing low blood pressure which drops when he stands, making him dizzy. The doctor says this is due to the compression caused by the tumors and there is nothing that can be done about it. Has anyone else had this problem and were they able to address it in any way?
As always, thanks for any help you can provide.
Topic: Moving toward the journey's end - sensitive (6 replies, posted in General Discussion)
My husband Terry has fought hard for over two years with surgery, radiation and chemo but we have run out of options and are now concetrating on palliative care. Terry's chemo ended in early October due to rising bilirubin levels. Although he had many scans and other tests in an effort to identify a way to bypass the blockage of the bile ducts, we learned that the problem was due to compression of the tumors in the liver on the bile ducts and there was no available treatment. During the past three months, he has had good periods when we were able to get out of the house and to socialize with friends and family as well as more difficult periods.
Last week, however, he became very ill so I took him to the ER. His bilirubin is now over 13 and is continuing to rise and he is quite jaundiced. He has experienced increasing confusion and memory loss that is being treated with laculose. He has also developed very low blood pressure that becomes worse if he tries to stand and we have been told this cannot be corrected. His ascites had increased a great deal and were drained twice while in the hospital, giving him a greatly increased level of comfort. At my request, yesterday they installed a drain so the fluid can be drained in a bottle, thus eliminating the need for further hospital procedures. A surprising effect of the drainage of the ascites is that his ability to eat seems to have been restored. For months he has been living on liquid supplements, yogurt etc. As soon as the ascites were drained, he ate a chicken sandwich and he has been eating well ever since. I wish we had done this earlier.
We think he will be discharged from the hospital today and the plan is to move him to a rehab facility for a week or so. We are not optimistic that he will benefit much from rehab at this point but it will buy me some time to set up home health care. I know that many of you have had good experiences with hospice and I may consider it at some point but, based on a previous negative experience with hospice for my mother, I would prefer to avoid it as long as I can. Fortunately, I will be able to hire caregivers to help me through this process. We don't have children and there are few family members nearby so I will need some help.
Despite all that is happening to him, my husband refuses to believe he will not recover. The aide at the hospital told me he said he plans to return to work as soon as he gets better. It breaks my heart when he says things like this but maybe he needs to retain a little bit of hope to get through this period.
I haven't posted for quite some time but it has helped me to put these thoughts in writing. This discussion board has been a wonderful resource for us and, once all this is over, I hope to return to doing some advocacy work for the Cholangiocarcinoma Foundation.
Wishing you and all on this board a very Merry Christmas!
Hello all. My husband has been trying very hard to eat and maintain his weight but is experiencing the sensation of a lump in his throat that makes swallowing unpleasant. The doctor says his digestive problems are likely caused by pressure from his liver tumors on his stomach. (He is not currently on chemo or radiation so they are not factors here.) He takes Prilosec every day and we have tried tried Zofran, Ativan, small meals, warm liquids, and everything else I could think of but so far nothing has really helped. He drinks Boost and is able to manage yogurt, soup and a few other foods in order to meet minimum calorie needs but I would really like to see him enjoy eating again. Any suggestions will be greatly appreciated.
Kris, I hope that you and the other moderators realize how much help you provide to others. I try to help the Foundation by reporting on Webinars and providing occasional review of documents but I know I don't have the sensitivity or emotional strength to answer posts the way you do. I think the person who criticized the members of the discussion board for not being helpful enough was probably feeling frustrated and overwhelmed. I lost my temper at the grocery the other day and later realized I was really feeling angry about my husband's illness but I directed the anger toward the poor grocery clerk instead. (I'll be banned from the store if I keep this up!) Overall, I think this is a remarkably civil and friendly discussion board and I don't know how I would have survived the last year without it.
Topic: Country specific characteristics of cholangiocarcinoma (1 replies, posted in New Developments)
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.
My husband was diagnosed with intrahepatic CC two years ago. He had a resection but the cancer returned a year ago. He did well on chemo for a while but the disease has progressed recently. The doctor was considering what to try next when my husband's bilirubin began rising. It is now 3.7 and he has been ill for the last couple of weeks.
The doctor at first thought that there was an obstruction of the bile duct that could be stented but several tests have failed to confirm this. He now thinks that it is more likely that the tumors in the liver are compressing the small intrahepatic bile ducts and causing the bilirubin to build up. He says there is no treatment for this condition and that further treatment of the cancer is not possible because of the high bilirubin. He plans to order one more MRI just to make sure he is not missing anything and, at my request, he ordered antibiotics in the unlikely event that an infection could be contributing to the problem. However, it is clear that he thinks we are nearing the end of the journey. At our meeting today he talked mostly about symptom relief and the possibility of hospice.
I knew this day would come but I wasn't expecting it so quickly. My husband has always felt pretty well despite everything he has gone through and less than a month ago he was working, going on walks, and enjoying life. I'm trying to accept this news but it's very hard for me to give up after we have fought this disease for so long. If anyone has any advice or new ideas about anything else to try, I will appreciate it. If there is nothing else to do, then I will do my best to cope and help him through these difficult days. Linda
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.