labrador
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Thank you Marion,
Yes, and I appreciate all of your thoughts and prayers from this wonderful family.
Love & hugs back to everyone
PatriciaDear Gavin, Marion, Darla, Lainy and the rest of the Cholangiocarcinoma family,
Thank you for your kind words, condolences and hugs. Your support for the short time since we registered has been so very helpful, especially knowing that you all completely understand the nature, complexity and course of this terrible disease. For myself, I know it was helpful to read you posts, to learn and really get a basic understanding of this complicated disease. It was also helpful spiritually and emotionally to know that this support family was there, ready and able to reply to any question I had.
I will be checking in regularly to say hi and would like permission to add this valuable organization to my Pinterest page (Braillethis) so that others in need may find appropriate education, support and comfort through your resource.Fondly,
PatriciaThank you Iowagirl/Marion, Lainy and Gavin,
Thanks for your prayers, thoughts and hugs – all appreciated. I know you all understand, wishing you didn’t have to, but it is comforting to have your knowing support. Steve is coming home today. Can’t wait for him to get there as it’s where he wants to be.Makua,
Although we have traveled slightly different paths, our families are both dealing with this horrible disease at the same time within about 10 miles from each other. If you would like to communicate directly with us you may find our e-mail under our profile.
We would also like to thank the entire group on this website for being such an informative and caring “family”. Special thanks to Lainy for your continued support through this challenging time.
Patricia
Profile name: LabradorMakua,
My brother was initially seen at Community-Toms River right after Christmas 2013. He was transferred to Beth Israel-Newark and at that time they completed two weeks of tests and the results were that the two top doctors felt surgery was not an option. My brother then went to I believe, the University of Penn. (right across from Children’s Hospital of Phila. ). He saw the top liver guy for the cholangiocarcinoma and the top heart doctor as he also has a large tumor in his heart. After several additional weeks of testing, they indicated that surgery was not an option. He followed-up with one of the top oncology doctors there and they recommended 5 weeks of radiation, 5 days a week. He also received Chemo shots at home, So, this is where he is today. 2 weeks post radiation. We have seen a steady decline in his energy level. He has problems with coughing and weak voice that we were told is a side effect of the radiation. I believe that the radiation/chemo was extremely draining for him in addition to it being an 1 1/2 hour drive to/from everyday. He doesn’t eat much, but I believe he drinks boost drinks and maybe ensure. Through all of this I would have to say that he has kept as positive of an attitude as anyone can have. I never would have thought that there would be another young man suffering though this same awful condition so close by as we are from the Ocean County area too.
Sending prayers your way,
LabradorHi Julie, My brother also recently went through similar situation and has resolved. Feel better!
LabradorHi David,
Glad you decided to join the group. We found out in Dec/Jan that my brother has this diagnosis. Quite a shock to the entire family. I agree with Marion that it is very beneficial to have a young man on board that can share your experience with others of the same age group. This is a great group of people! Thanks for joining and sharing you experience.Labrador
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,
LabradorMakua,
Just wanted to introduce ourselves. We are going through similar situation and are within a few towns away from you. My brother is 57 and only had symptoms in October, November. He is receiving radiation and chemo at University of Penn. Daily. Remember to also take care of yourself.Labrador family
Iowagirl, 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.
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.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.
