September 7, 2008 at 7:03 pm #20553sherrigMember
Update on my stepday and hope for some words of encouragement and help. I posted last in June about my stepda’d oncologist telling us it was time to let nature run it’s course and we decided to go back to the surgeon who did the liver resection almost 2 years ago and he hadn’t even been cc’d on anything in regards to what they were doing for him. He said he wanted him back on chemo which he had only taken once and that was a year and a half ago. Well, 2 weeks ago they did a pet scan and then put in the port to start chemo which is suppose to begin this week. But over the last 4 weeks he has gone down really fast. He can’t eat, sleeps all the time, is in a lot of pain and is having trouble breathing. Why do they wait so long to take action? I just don’t get it . This is a precious life we are talking about and they just see when they can put it on the schedule. His cancer that we of is back in the liver, many lymph nodes in the stomach area, the entire chest wall cavity and the sternum. Has anyone been at this point and found help or treatment that worked. My mom is just having such a hard time and we are not giving up. It is just not fair. Where do we go from here? What happens toward the end?June 28, 2008 at 1:46 pm #20552
Thank you Iris that is so very true and so very encouraging. It is always good to hear that people have lived longer than what they were told. My step dad doesn’t want to know his time frame because he doesn’t want it to be that way. He wants to continue on golfing, going places and enjoying my mom and his famly and he says he knows his body. Thanks again for the encouraging words and I hope your husband is doing well.June 28, 2008 at 8:08 am #20551iris-aMember
I am so sorry for the reason you had to come to this board. CC is a very nasty cancer and according to the specialists in the Netherlands, even after a “successfull” operation it allways returns within 2-5 years. The fact that is spreading so much is not good. There are people who respond to chemo, but most don’t. It seems the most successfull when the patient tries to live on and be active as he used to. And taking extra vitamines and omega 3 helps slowing down the growth. Happiness is another thing that helps, a happy person has more resistance. Now I hear you thinking how can one with this cancer be happy?? Believe me, it’s possible. My husband was diagnosed last year and surgery was broken off because the cancer went to far into the liver. He went back to work, plays squash, runs and bikes and he is really enjoying every day. Instead of the 2-3 months lifeprediction he got, we are more than a year further now and we had a wonderful year, cause we see it as a present. And yes, by him too the cancer is spreading. But because he literally resists to lay down, but goes on doing what he did, there is no energy loss. And also no weight loss. He doesnot like eating anything as he used to, but what he likes he eats a little more of.
I wish you and your family strength and the will to fight. I sincerely hope you will have more happy time together.
Thinking of you,
Iris.June 27, 2008 at 11:34 pm #20550marionsModerator
sg…I am hoping for others to answer some of your questions, also. Generally, over the weekend the postings on this board slow down, significantly. I was mentioning the stint in re: to the jaundice you might be seeing. It is something you would want to mention to the physician. In our case, when my husband was battling this cancer it was the physicians questioning me in re: to any yellowing of the skin or, cornea as it sometimes is not very noticeable under specific lighting. I realize and understand your frustration with the recurrence of this cancer. It is heartbreaking. Supposedly, this cancer is considered to be slow-growing although, I was explained that two years would encompass this concept of slow growth. Doesn’t appear slow enough for me, either. Hopefully, with the help of the physicians and the wonderful people on this board your family will be knowledgeable to make informed decisions in re: to the further treatments of your Dad.
Until others can respond to you it might be helpful to use the “Search” function. Also, you might want to read up on the description of Cholangiocarcinoma on top of the page. In addition too, you might want to re-post some of your questions as sometimes the threads are lost due to other’s writing in. I am so glad for you to have joined our CC family although, as always, I wish it had been for other circumstances. Thinking of you and wishing for the absolute best.
MarionsJune 27, 2008 at 10:58 pm #20549
Thank you so much for the quick response. The scary part is everything had held it’s own for almost 2 years and then bam it came back in the liver, appreared in the chest wall cavity and the entire stomach area as well as multiple lymph nodes in the stomach area. You mention stints and is bile draining I am not sure what that means. I guess I wonder once it starts spreading as this has how quick it continues?June 27, 2008 at 9:21 pm #20548marionsModerator
sg.. so sorry for having tragedy strike not just once but, twice in your family. The question of chemotherapy in this advanced stage is most likely one being debated, by most. As you have been visiting this site for quite some time now you must have noticed the approaches vary, greatly. Certainly, I would ask for another opinion in re: to treatment as even the medical community differs in their approach.
A 30% chance of response could possibly include your Step Dad and he might just be the one who is tolerating the treatment, well. So, one never knows until it is tried. On the other hand with this cancer being slow growing possibly, with stints and his bile draining to keep him comfortable he may live comfortably for some time to come. Palliative care encompasses many things. I am sure for others to be able to help you along with your questions.
My heart goes out to you and your family,
MarionsJune 27, 2008 at 8:56 pm #1311
Hi everyone!!! I use to read on this forum very frequently when my step dad was diagnosed with cc 2 years ago. They removed 70% of his liver and he underwent some chemo and was doing very well until a little over a year ago the oncologist said the scan showed lots and lots of lymp nodes and we should let nature take it’s course. We then moved to a different oncologist at the Markey Cancer Center who couldn’t believe how wonderful he looked and how active he was golfing, working out and this is a 70 year old man who is just full of life. He said there was nothing wrong and he didn’t need any treatment right now. Everything looked great for what he had. Several months later a few lymph nodes did look larger in the neck and they did radiation and then some in the stomach and more radiation and then everything looked good again and said he would see him back in 4 months. After this scan now the cancer is back in the liver, the entire chest wall cavity, stomach and mulitiple lymph nodes. The doc says that most people at the point decide not to do any treatment and enjoy the time they have left that the chemos that are left to try there are only a 30% chance they will prolong his life and will make him very very sick.
My dad died of colon cancer almost 10 years ago and he only lasted with us 8 months because his was so advanced they couldn’t even budge the tumors.
This is just so hard on my mom and my family that these two were able to find each other and now he is going to be taken away from her from this awful disease.
Has anyone had the same situation and had any help at this point? What start to happen? The thing is he is still playing gold, and looks wonderful. The bad thing is he can’t eat much and is getting tired a lot more easy. Starting to looking a little jaundice maybe.
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