Hi Carl. My husband had a resection for ICC in November 2011 but it recurred in September 2012. His oncologist sent him for a consultation at the U of Chicago where they were doing a Folfirinox trial. My husband wasn't eligible for the trial but the two oncologists recommended he try Folfirinox anyway. His first treatment was on November 1, 2012. He had very few side effects for the first eight weeks but then began experiencing more serious problems with diarrhea and fatigue as well as neuropathy. After my husband had completed sixteen weeks on Folfirinox, the doctor modified the treatment somewhat by reducing the dosage of one of the drugs and eliminating oxaliplatin. These changes greatly reduced the side effects and the recent scan showed that the tumors are still stable.
My husband is ten years older than your wife but he was able to handle the side effects pretty well and has kept working full-time throughout the treatment. However, each person reacts differently and Folfirinox is a very tough regimen that many people are unable to tolerate. The data seems to show that it is the preferred treatment for pancreatic cancer but research on its effect on cholangiocarcinoma is limited. Best wishes to your wife.
1 Thu, 02 May 2013 07:05:07
Re: Gem/Cis v. Folflorinox (19 replies, posted in Chemotherapy)
2 Mon, 29 Apr 2013 20:36:17
Re: Still stable! (9 replies, posted in Good News / What's Working)
Thank you all for your kind words. It is hard to have to deal with scans every eight weeks but we are glad the oncologist is monitoring Terry so closely. Perhaps we are in complete denial but we have chosen to treat this as a chronic disease that needs to be managed until a more effective treatment comes along. Terry is optimistic by nature but I need a little more help sometimes and the support I have received on this discussion board has been invaluable.
3 Fri, 26 Apr 2013 18:26:56
Topic: Still stable! (9 replies, posted in Good News / What's Working)
We received my husband's scan results today and were happy to learn that there was no change from the last scan eight weeks ago. He started FOLFIRINOX last November after a recurrence of intrahepatic CC but, after eight rounds, the doctor eliminated the oxaliplatin and made some dosage changes in the other drugs to reduce side effects. As a result, my husband has been feeling very well and his energy level and weight have increased. His labs today were the best they have been in months. There will be another scan in eight weeks but we plan to enjoy ourselves as much as possible in the meantime.
4 Thu, 25 Apr 2013 19:55:25
Re: Treatment Cycles (11 replies, posted in Chemotherapy)
Hi Crissie. You may have heard some very frightening things about chemo but so much depends on the type of chemo, the physical condition of the person receiving it, and many other factors. My husband was on a very tough chemo regimen but went several months before having any significant side effects. Once the side effects appeared, things were more difficult for him but he was still able to work and enjoy himself much of the time. Later the doctor changed his dosage and he is now feeling quite well. Some people experience side effects shortly after having chemo, some a few days later, and some not at all. Like everything else relating to this cancer, it is different for each person.
5 Thu, 25 Apr 2013 08:31:17
Re: Gemzar/Xeloda (17 replies, posted in Chemotherapy)
My husband was on Xeloda last year and it was at least two months before he had any problems with hand and foot syndrome. Even then it was fairly mild until he spent a couple of hours doing yard work. Apparently he put a lot of pressure on his toes when he was kneeling in the dirt and ended up losing some toenails as a result. Otherwise, it wasn't too bad and lots of lotion definitely helped.
6 Tue, 23 Apr 2013 08:25:24
Re: Genetic & Molecular testing (2 replies, posted in General Discussion)
My husband's oncologist at the University of Chicago used Foundation Medicine in Boston.
http://www.foundationmedicine.com/
7 Thu, 18 Apr 2013 21:45:12
Re: Congratulations, Linda (10 replies, posted in Announcements)
Thank you Marion. This is a wonderful opportunity and I am looking forward to using the knowledge and skills I gain through the RAN program to benefit the Cholangiocarcinoma Foundation.
8 Sun, 14 Apr 2013 13:56:56
Topic: A lovely day (3 replies, posted in Members' Cafe)
After a long, cold Chicago winter, today was sunny and pleasant. My husband and I took a long walk at the arboretum, enjoying the weather and the early spring flowers. When his cancer returned last fall, I wondered whether we would ever take a walk like this again. His chemo was very hard on him but the doctor has made some changes in his regimen and he feels much better now. The constant diarrhea is gone, his energy is better and he is even growing some hair. He has a scan scheduled for next week and we have no idea what the future will bring. The only good thing I can think of about cancer is that it really does make one appreciate beautiful days like today.
9 Sun, 07 Apr 2013 19:04:17
Re: My Take on The 3rd CanLiv Hepatobiliary Research symposium on 4/5/2013 (4 replies, posted in New Developments)
Great information! I was pleased that you had a positive impression of Dr. Catenacci. My husband wasn't eligible for his clinical trial but we were quite impressed by his knowledge and ease with patients and anticipate more interaction with him in the future.
10 Tue, 02 Apr 2013 22:53:03
Topic: What is intrahepatic cholangiocarcinoma? (4 replies, posted in New Developments)
11 Tue, 02 Apr 2013 08:15:58
Re: Chemo port ...along with 2 biliary catathers (5 replies, posted in General Discussion)
My husband had a port installed last November and has had no problems at all. He had minor pain for a day or two afterwards but none since. There were some precautions regarding bathing for a few weeks but once the skin grew over, he was able to shower normally. It's now just a small bump in his chest and he doesn't give it much thought. The best thing is that they are able to use it for all of his blood tests as well as his chemo.
12 Fri, 29 Mar 2013 14:29:53
Topic: Increasing alkaline phosphatase (ALP) (1 replies, posted in General Discussion)
Hello all. My husband has had eight rounds of FOLFIRINOX (FU-5/irinotecan/ oxaliplatin) and three additional rounds of FU-5/irinotecan. His most recent CT scan on February 22 showed that his tumors were stable. My concern is that his ALP level has been rising for the last couple of months. It was around 130-135 through the end of January. However, the last four readings have been 156, 185, 216, and 235 so it is now more than twice the normal level. His AST is a bit high (55) but ALT and bilirubin are normal. His tumor markers have always been in the normal range. He is feeling well and has no pain. The oncologist says the rise in ALP could be a chemo side effect or an indication of tumor progression but we really won't know until the next scan which will be in three or four weeks. Has anyone else experienced this?
13 Wed, 27 Mar 2013 14:17:32
Re: Lauren's Surgery (122 replies, posted in General Discussion)
Best wishes for a speedy recovery for Lauren.
14 Tue, 26 Mar 2013 12:34:33
Re: Dry cough (8 replies, posted in Adverse Reactions & Side Effects)
As an update, we solved this mystery. Soon after I wrote my message, my husband started experiencing more cold symptoms and he is now feeling much better. I, on the other hand, caught his cold and am now feeling miserable. In any event, I'm glad it was just a cold this time and not some new chemo side effect.
15 Wed, 20 Mar 2013 21:30:15
Re: Dry cough (8 replies, posted in Adverse Reactions & Side Effects)
That's a good question, Lainy. The doctor eliminated his oral dexmethasone a few weeks ago since he never seems to get any nausea but I think they still give it to him when he receives his chemo. I'll ask the doctor if that could be part of the problem. I loved your comment about Terry being a warrior. No matter what happens he continues to be positive and upbeat. Today is his birthday so we had dinner with some family members at a local restaurant. Terry acknowledged that it has been a hard year but said he is extremely grateful to be having another birthday. I love the stories you tell about your husband. It sounds like he was much the same way.
16 Wed, 20 Mar 2013 20:49:14
Topic: Dry cough (8 replies, posted in Adverse Reactions & Side Effects)
It seems as though I post in this section almost every week about one of my husband's chemo side effects. He has been through diarrhea, cracked heels, sore fingers, a rash, and a host of other problems. Fortunately, the cracked heels, sore fingers and rash have all disappeared and (as the result of a dosage change) even the diarrhea is much better. However, for the last two weeks he has had a dry cough that is keeping him up at night. The oncology nurse gave him a prescription but it hasn't done much good. We thought that perhaps he just had a cold but he doesn't seem to have other symptoms. I was wondering whether this could be yet another chemo side effect and whether anyone has any advice on how to deal with it. He just had a scan a couple of weeks ago so I don't think there is a problem with his lungs.
17 Sun, 10 Mar 2013 16:35:04
Re: Posting Sensitive Subjects and Statistics (24 replies, posted in General Discussion)
I think it's an interesting topic, Randi and Lainy. It's hard for a board to address everyone's needs and whatever you decide is fine with me. I've never found an internet board that is friendier and more supportive than this one.
18 Sun, 10 Mar 2013 15:44:34
Re: Posting Sensitive Subjects and Statistics (24 replies, posted in General Discussion)
I think most patients learn the statistics very early in the process. When my husband was first diagnosed, we received an information pamphlet from the American Cancer Society that was less than encouraging. I came to this website for information and I have found a wealth of it from Marion, Percy, Gavin and others who post links to studies and websites about cholangiocarcinoma. Like Clarem, I find some of the personal stories, particularly about patients in the final stages of the disease, the most difficult to read. For a long time I limited myself to the more scientific sections of the board as well as the "good news/what's working" section but I then found that I could learn a lot from the other sections of the board too. Although some of the posts make me sad, many of them are full of hope and provide information we would never learn elsewhere. Personally, I like the open discussion on this board and would not be in favor of changing it.
19 Fri, 01 Mar 2013 18:35:00
Re: Stable after 8 rounds of FOLFIRINOX (8 replies, posted in Good News / What's Working)
Hi Marion. The oncologist lowered the dosage of the Irinotecan last time and that made a big difference with respect to the diarrhea which was the biggest problem. The doctor was more worried about the Oxaliplatin because of possible permanent damage from the neuropathy.
20 Fri, 01 Mar 2013 17:53:06
Re: Stable after 8 rounds of FOLFIRINOX (8 replies, posted in Good News / What's Working)
Thanks Lainy. I just noticed I made some spelling errors - Oxaliplatin and chemoembolization. Oh well, it was a very long day!
21 Fri, 01 Mar 2013 17:32:01
Topic: Stable after 8 rounds of FOLFIRINOX (8 replies, posted in Good News / What's Working)
We received my husband's CT scan results today. He was diagnosed with intrahepatic CC in October 2011 and had a resection (70 percent of the liver) followed by radiation and Xeloda. In September 2012, he learned the cancer had returned (approximately 20 small tumors in the liver and one affected lymph node) and on November 1, he started on FOLFIRINOX. His late December scan showed stable disease in the liver and shrinkage of the lymph node. This scan showed no change since the January scan and his labs show normal liver function. The doctor is pleased with these results but wants to modify the treatment at this point since FOLFIRINOX has so many side effects. My husband will continue on FU-5 and Irinotecan but will take a break from Oxaliolatin. During our meeting, we also discussed other chemo regimens, clinical trials, chemoemolization and other steps that may be appropriate once this treatment is no longer effective. I was very pleased that the doctor understands our desire to remain proactive.
22 Thu, 28 Feb 2013 21:14:29
Re: Caregiver's Bill of Rights (9 replies, posted in General Discussion)
Hi Cristerry. My husband is on Folfirinox - 5FR, oxaliplatin, irinotecan and leucovorin and it sounds as though your husband may be on the same regimen. The leucovorin enhances the effectiveness of the other drugs and has few side effects on its on own. My husband does get a shot of neupogen to help his blood count. Folfirinox is very tough chemo regimen and is generally used only used for people who are in relatively good health otherwise. The side effects Pam mentioned are quite common but my husband has been lucky as, after 8 rounds, his neuropathy is quite mild. He has to be careful outside on windy days and trys to drink beverages at room temperature but so far it hasn't been too bad. He has never had any nausea although this can be a problem for some people. His biggest problem has been diarrhea which became severe during the last month. However, the doctor reduced his dosage of irinotecan last time and he is now feeling better and we are able to go out to dinner again. He has some problems with fatigue but he has managed to continue working throughout his treatment. There have been some other occasional problems (rash, mouth sores, cracking heels, sore thumbs) now and then, but it really hasn't been as bad as we expected. My husband has an incredibly positive attitude and that helps him deal with the side effects. Hope all goes well.
23 Tue, 26 Feb 2013 18:46:03
Re: New member (15 replies, posted in Introductions!)
Hi Susan. I'm very sorry you and your husband are having to deal with this. My husband had lung cancer a number of years ago and his cholangiocarcinoma was found during his annual CT scan in October 2011. He had surgery but the cancer returned in September and he is now on FOLFIRINOX. My husband also has intrahepatic CC and has never had any symptoms. It is my understanding that the jaundice and other problems so many patients describe are less common in intrahepatic CC. Although my husband has some side effects from the chemo, he still doesn't have any pain or other problems relating to the cancer itself. He is self-employed and was originally hesitant to tell his clients about his illness. Once he did, however, their support has been over-whelming and he is still working full-time. Your husband will work out what is best for him. It sounds like you are doing all the right things by getting additional opinions, investigating clinical trials and doing research. I have found a lot of support on this board and I know you will too. Take care.
24 Mon, 25 Feb 2013 18:23:33
Topic: Has anyone tried Kudzu Root for diarrhea? (6 replies, posted in Adverse Reactions & Side Effects)
I attended a nutrition class at the Wellness House, a nonprofit in the Chicago suburbs that provides support services for cancer patients and their families. The nutritionist strongly recommended a mixture of Kudzu root (which she says is available at Whole Foods) and apple juice, along with cinnamon, vanilla and ginger for flavoring, for chemo-related diarrhea. She claims that some patients have found it more effective than medication. Before I coerce my poor husband into drinking this concoction, I wondered whether anyone else has had any experience with it.
25 Thu, 21 Feb 2013 11:49:22
Re: My Mom Recently Diagnosed (and we can't figure out which end up) (23 replies, posted in General Discussion)
Hi Rebecca. We live in the Chicago area also. Despite all of our excellent medical facilities here, there is not a lot of expertise in cholangiocarcinoma. We consulted with Dr. Daniel Catenacci at the University of Chicago who is knowledgeable about cholangiocarcinoma and is conducting some clinical trials. I think U of C is the best choice in Chicago but we are also exploring options outside of this area so we will be prepared if this chemo regimen stops working. My husband is taking a very aggressive approach to fighting his cancer but this is not the right course for everyone. I wish you and your mother the very best.
