Hello All
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Hello everyone,
Just a quick update. My brother continues with radiation 5 days a week. I think he has two more weeks of radiation then a re-evaluation. Reportedly swelling in legs has been better. Eating continues to be a challenge.
Best to all,
LabradorIowagirl, thanks for this additional info. Boy, this is exactly what my brother describes. 5 straight days of radiation and he’s wiped. The weekends coming and I hope he along with others with cc have a good weekend.
Darla, thanks for your words. I will keep you updated.
Marion…thanks for the advice on moving around more. I was just so shocked that my legs were hurting so much from fluid retention while still even in the chair getting the chemo…and then when I tried to walk, the extra fluid was more than just uncomfortable. The fact that they had to use some injection to get my body to move out urine probably points to a problem. Once I got home, I didn’t want to move…but later that night I finally decided I had to walk some…to try to move blood through those legs of mine. I could only do it for 5 minutes…before I was too short of breath and it hurt to breathe…a bad tightness in my chest similar to what I felt during the last half of the chemo earlier that day. No gastric problems yet…nausea or otherwise. The chemo was on Tuesday….and today is only Thursday. I was expecting the first several days to be good and then get hit by some side effect on Friday…the third day, right? But today….I feel almost normal and on top of the world. If I get by tomorrow without any grief….I figure it’s just my weird body doing things in its own way and hang what it’s suppose to do.
)))) Next time with the cisplatin though…..I will definitely force myself to walk more, even if it does hurt. Who knows, I may not have the urine elimination problem again. It may be though, that I had an allergic reaction later with itching and burning….so have plenty to report to them about and questions. I know I’m pretty lucky all the same….and am grateful that at least one infusion is done …half way through the first round. To someone who has been through countless rounds…I’m sure I sound silly…but when I don’t know what to expect….I think I really get anxious.Labrador,
I would like to add my welcome to the others. We all have asked ourselves the same question. How did this happen and so fast. It just seems to come out of know where and really knock you down. I am sorry that you and your family are now part of our club, but glad you have joined us as you are in the best place to be for help and support concerning this disease.
You have already gotten a lot of good advice and I agree with all that has been said. a second or third opinion is a good option and also that comfort and pain control is very important.
Please let us know how your brother is doing and know that you have people here that really do understand and care.
Darla
Thank you Kris, Lainy, Iowagirl and Marion for your helpful ideas. My brother has a new recliner and he just got a new bed that raises the head and feet/legs as needed. He has a very dedicated loving wife that is juggling work and primary care giver role. He has a very supportive family that includes both parents (81 & 80) that are driving him several times a week the hour and 1/2 to Philly (for radiation) and with support of brothers and sisters that all live within 10 miles. He also has great spiritual support of aunts/uncles. Eating is difficult but he will ask for items he craves. His wife makes him fresh juice daily along with getting Ensure and milk shakes. He has been short of breath and can only walk a few steps (about 10) at a time. I feel that this disease knocked the heck out of the whole family because until now we have not had any serious illness with any family member. I find myself thinking about this disease and wonder how did this happen and happen so fast. My brother has worked in the field of plastic mold engineering for 30 years and just made president of his company. My brother has demonstrated a great positive “let’s move forward” attitude.
Thanks for listening and the best to all.Julie…some time ago I attended a plenary session where the subject of activity or the lack thereof, had been discussed. It was pointed out that those patients not moving around suffered the most. Hence, it is advised to walk several times per day may it be in the house or, if weather allows, outside as well. This helps with the digestion and fluid retention issues.
Hugs,
MarionMarion….excellent idea about raising the legs for water rentention. On my first chemo, I held in a lot of fluid and almost couldn’t walk on my legs the first day because I sat in the recliner…but with my back upright, which doesn’t get your feet in line with or above the rest of you. Until I was in bed with two pillows under my lower legs and one under my knees for several hours, the fluid just wouldn’t move. It’ s pretty boring in that position when you’re awake, but really important to do.
Julie T.
Labrador…definitely discuss the water retention with the physician. Raising the legs may also help with water retention in lower extremities.
Hugs,
MarionDear Labrador,
I am fairly new to this too, having had my tumor found Jan 27th, 2014. Please know that you have found a place to come filled with wonderful people who don’t judge….and will listen and understand. We’re all in various stages of this disease and there’s always someone who has gone through something similar to what your loved one is. But, the one thing that is constant through everyone here is the universal caring. I don’t know when I’ve ever had the experience of such genuine acceptance. If you need to just talk to someone and vent a little….this is the place. If you want info…you couldn’t have come to a bretter place either.
Julie T
Dear Labrador, I am so sorry that your brother has to deal with so much. We are huge believers in 2nd and 3rd opinions and you want to make sure that where he is being treated and his ONC as well have lots of experience with CC. Don’t ever feel you can’t get another opinion. You might want to ask the ONC why the swelling and what can be done about it. As always comfort is the bottom line. You have come to the best place to be as we have a very caring and informative family here from all over the world. You are not alone, we are all here for you and thanks for the information!
My brother started out being very tired and losing weight on October 2013. He was being followed by his primary checking blood levels and different tests to determine why blood counts were off. He was initially denied a cat scan by insurance. He went to the ER and had a Cat Scan of the liver and they saw the tumor. Then he was sent to Beth Israel Christmas week where they were going to operate on his liver, but then they found a large tumor across his diaphragm and a large cancerous growth around his heart. He was there 13 days when they determined they could not do surgery. Then they contacted University of Penn and he was scheduled for resection surgery but it was cancelled as they felt he would not make it through surgery. So now, he was referred to the oncology Dept. where he is receiving radiation and (Chemo pill). It may be proton radiation. We have been told the objective is to control and shrink the tumor. He is experiencing swelling in his lower abdominal and legs.
Dear Labrador, welcome to our remarkable family and know that you have come to the best place you could be for CC support. We all know what kind of shock you are in and like Kris said when you feel more up to please tell us about your brother’s Journey thus far. Our best wishes to your family.
Welcome to the family, although I’m sorry you had to join us.
There seems to be a large number of us from the NJ area. I grew up in Summit.
When you get time please let us know how your brother is doing, what care he is receiving, etc.
I’m sure you will find many helpful and supportive people here.Hello, we have been viewing you message boards and have found your group to be very informative! I am completing this first post for our family. My brother was diagnosed with cholangiocarcinoma December of 2013 at the age of 57. It took some time for us to think about looking for such a site. We just wanted to start with a quick intro.
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