Introduction
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Posts
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Hi Dave!
I think that you and I registered on the same day here. My father was recently diagnosed with ICC and started chemo a week ago. He had his second treatment today. He had a rough couple of days, but seems to be tolerating it pretty well. His doctors also said he is not a candidate for surgery, but we will be seeking second, third, and fourth opinions.
I feel so lucky to have found this website!! It has such a wealth of knowledge and support. Next week I fly out to be with my dad, and the first thing I will do is get him registered here!
Anyway, I just wanted to reach out and say “hello”, and I’m so sorry.Keep up the good work, and I’m crossing my fingers for both you and my dad!
Val
Dear Dave,
Welcome to our group. My Mom was diagnosed in October 2013 and was also closed back up during surgery (vena cava/bleeding risk). At that time, we thought all hope was gone. However, she is still with us and feeling good after chemo and Y-90. This time we went 5 months without a scan, so are hoping that when we get the results on Friday, she is still in remission.
Best wishes,
CatherineDave….you found what works best for you in alleviating the side effects of chemo and gained weight as well. Congratulations. It also helps to drink, drink, drink fluids to flush the chemo through your system as quickly as possible.
Hugs,
MarionIt is nice to hear from others that are facing a similar challenge. I appreciate the responses. As far as how I’m feeling, I have found my reaction to each of the 3 treatments to have a few similarities but many differences. One thing I did learn: Emend is a wonderful anti-nausea medication. I had nausea for a few days after treatments 1 & 2 (actually vomited only once) but with the Emend prior to treatment 3, I never had any nausea symptoms. Highly recommend.
My appetite has remained strong and I finally stopped losing weight. I’ve put on a couple of lbs in the past week!Dave…. a warm welcome from me as well. I agree with Julie in that we are not experts, but the collective postings from all members provides invaluable information for all touched by this cancer. I am glad you joined us and cross my fingers for a positive response to the current chemo regimen. How are you feeling? Any side effects?
Hugs,
MarionDear Dave, welcome to our remarkable family, so sorry you had to join us but like Julie wrote….you will be glad you did. Hurrah for that GI specialist! Below is a site that you may find helpful as a new member and please do keep us in your loop by letting us know how you are doing. No one wants to be here but you will find the most loving and caring people in the world.
http://cholangiocarcinoma.org/newly-dx/
Dave,
If I’m up….I’m checking my computer. LOL I was so tired…but afraid to go to sleep. Don’t ask me why….could hardly keep my eyes open, but just coiuldn’t stand the idea o f lying in bed and not being able to go to sleep. Shouldn’t have worried…went to sleep in 5 min or less.
I r esponded when I did, because I remember when I first joined the boards…..and hoped for someone to come back on and give me the courage I needed at that time. My details last night of my current situation was to show you that no matter what is happening…..I”m still here….despite the bad news…not once, but three times.
I will find out today when I consult a surgeon if he would consider a third resection. Transplants for my type of CC….Intrahepatic,….are very few and far between….generally not done, but intrahepatic comes back so frequently, even in the new transplanted organ. That said….I was recentl y humbled by three people who volunteered to get themselves checked to see if they were a match for a live donor transplant. That will make you stop and realize your place in the universe…and how very lucky you really are. It isn’t without risk to the donor .
Must go….we are packing the car and heading out right now for Rochester, MN to Mayo for the consult. Wish me luck.
Julie
Julie,
I appreciate the response at that hour of the night! Actually, when I hit the button on my computer to enter the post, it looked like it didn’t go through. I was getting up this morning to try again when I saw that it did indeed post on the website and I had a reply.
I’m so sorry to hear about the recurrance of your disease. Are more surgeries possible? Liver transplant?
Stay strong and keep fighting!!Dave
Dear David,
I may be the only one up at this hour….. dealing with my own CC medical crisis, but before I go to bed for a couple hours, I wanted to take this time to welcome you to the discussion boards. You will definitely find information here…..but more than that….you will find comfort when you ask for it (and sometimes when y ou don’t) , and….most of all, you will find friends who understand what you are going through. We aren’t experts here…..well, maybe a couple might be….but for the most part, we are a bunch of people who are clinging to each other for support and help to get us through what could be the worst…and sometimes the best days of our lives.
My CC is intrahepatic, and I did have a resection in Feb of 2014, followed by a subsequent resection in Dec of 2015 for a recurrence. I also had adjuvant chemo of Gemcitibine and Cisplatin following the first resection. Now, I find myself in the situation a week ago of hearing that my new scans show another recurrence of the cancer, still in my liver, but this time two tumors.
You are very lucky to have a couple phy sicians in the family who can help you through the maze of treatments and trials. For those of us who are trying to do this on our own, it’s very time consuming and difficult to navigate and understand.
Again….welcome and I look forward to more of your posts.
Julie T.
Hello,
My name is Dave. I am 61 years old. Back in February of this year I was having some irritable bowel symptoms and went to the doctor for a series of tests. The tests did not reveal anything extraordinary. A couple of months later, I had a sudden onset of severe abdominal pain. I was passed on to a GI specialist who spotted something in my blood work that, along with the pain I experienced, warrented an ultra sound of my gall bladder and liver. The test revealed that my gall bladder was full of stones but also showed something going on with my bile ducts. I was scheduled for an ERCP. The hope was that a stone had migrated from the gall bladder and was blocking a bile duct….but that’s not the news I received. I was told I had a Klatskin’s tumor.
At first, it appeared I was a candidate for major surgery to remove the tumor, the left side of my liver and reconnect the remaining bile duct to my small intestines. However, when the surgeon at Mass General went in, he saw the cancer had spread to my abdominal wall. My gall bladder was removed and 2 plastic stents were placed in my bile ducts but I was told there was no benefit to doing the rest of the big surgery once the cancer had spread. I began a series of 4 chemo treatments with the hope of shrinking the tumor enough to get more permanent metal stents put in place.
I have had 3 of the 4 treatments: gemcitabine and oxaliplatin.
So far, the only place the cancer has spread is to the abdominal wall.
I have a wonderful support group including two close family members who are physicians. They are helping me research all the new treatments and clinical trials out there that may help me.
I’ve been reading posts on this website and watched some of the videos from the recent conference.
I look forward to sharing my experience on this journey with all of you.
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