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Welcome to this site and I hope your brother continues to tolerate his chemo. We went to Georgetown in October to see if my husband would qualify for a clinical trial. We met with Dr. Jimmy Hwang. We liked him very much and he was honest with my husband and said there were no trials that he could be considered for at that time because the chemo he was on had damaged his kidney function. My husband was diagnosed almost four years ago with Stage IV ICC. He has fought very hard and has kept a positive attitude most of the time. I truly believe that attitude plays a big part in fighting this cancer. Tell your brother to stay strong and fight with everything he’s got and to never give up hope. One day this cancer will be defeated; hopefully, sooner than later. Hang in there and continue to support your sister and brother. I will say a prayer for each of you, PeggyP
My husband’s prognosis was 7 months. He has Stage IV ICC. His first symptom was a dull pain in his right side. In July, it will be 4 years. So don’t put a timeline on your life. Take one day at a time and set goals and do things that you can while you can. John has had some side effects from the different chemos he’s been on, but his biggest complaint has been fatigue and stomach pain. He still makes himself do as much as he can each day, and he knows when to quit. He rests more during the day while the kids are at school so he can be up when they get home. Prayer is a powerful thing and I’m sure that has helped John as well. Stay positive and seek other opinions and research as much as you can. God bless you and your family. PeggyP
GREAT NEWS Eli!!!
I know you and Marina are ecstatic. Thanks for sharing this with us. Here’s to many more clean scans. PeggyP
What great news!! That’s what we like to hear. I hope you and Ron have a big celebration. I live in Staunton, VA so I’m not too far from you. My husband, John, has Stage IV ICC and is coming up on four years in July. Sending tons of hugs your way, PeggyP
Welcome to the CC family. My husband was diagnosed Stage IV ICC in August ’08. He had a resection where they removed over 70 percent of his liver, gallbladder, right kidney, part of colon and part of his stomach cavity. In March ’09, he presented with multiple tumors in the part of liver that had been left. He has been treated with Folfox, Gem/Cis and Xeloda. He was also taking Avastin. They did a trial run to see if he would be a candidate for radioembolization, but there was too much leakage into his stomach cavity. He did have a chemoembolization the end of February and is scheduled for another one next week. I think this has taken more out of him than his original resection. He is very weak, stomach aches like crazy, and he has very little appetite. I try to remain positive and hope that he responds better to the next one. I can’t imagine having five kids and having to do all that you do for your husband. We have two kids at home (14 and 9) who are very active in sports. I feel like I am running from one place to the other all the time. I took Kaden to the doctor this morning as he is having some pain in his pitching arm. He fell while playing basketball and hurt same arm. The doctor said that he should not pitch as much or throw as hard because he could damage this arm for life. He’s only 9 and has a game tomorrow night. I’m sure his coaches will love hearing this. I just bought John some Boost drinks today. He drank one and said that it wasn’t bad. I hope he gets his appetite back soon as he, too, has lost some weight. I will keep you and your family in my prayers and hope that your husband will get better each day. Hugs, PeggyP
You and John have something in common; his birthday is April 25th, too.
Sounds like a good report on your mom. My husband’s first chemo was Folfox and he had a significant response with it. He had 18 cycles before he had an adverse reaction to the oxaliplatin. Hope your mom responds to it well and that she has shrinkage on her next scans. Hugs, PeggyP
Moira seems to be a strong woman, battling this terrible disease with all her strength. I know my husband stays cold most of the time. Just as the others have said, I think it’s either from the cancer itself or the chemo. John keeps a throw with him all the time so he can cover up when he feels too chilled. You are so right when you say CC is so unfair–it seems to affect the nicest people. I hope Moira continues her fight and that you can make many more memories. Hugs, PeggyP
I am so sorry to hear that Sarah has passed. You have my heartfelt sympathy and prayers for you and your family. I know Sarah is at peace now so be comforted by that until you and Sarah are reunited for eternity. God bless, PeggyPMarch 29, 2012 at 4:22 am in reply to: Sanity check on chemo treatment recommendation from new Oncologist #59366
Hi CC Caretaker,
Folfox was the first chemo that my husband was treated with. After two treatments they added Avastin. He then had ten more cycles before taking a chemo break. He continued to use Avastin until his scans showed progression. He was put back on Folfox since he had significant success the first time. At the end of his sixth cycle, he had tremendous pain in his back. They still scheduled him for his seventh cycle. At the beginning of that cycle, he started shaking with chills and they had to keep putting heated blankets on him. They attributed this to an adverse reaction to the oxaliplatin. He was diagnosed Stage IV ICC in August ’08. His next treatment was with Gem/Cis until this started affecting his remaining kidney. Then they switched him to Xeloda. He just had a chemoembolization 5 weeks ago and will have another on April 17. I personally felt that he had his best results with the Folfox. Hope this helps and welcome to our family, PeggyP
Please accept my sincere condolences in the loss of your Dad. He is at peace now and I’m sure he’ll be watching over you and your family. I lost my Dad a little over a year ago, and I try to visualize the good times we had and forget the memories of his illness. It seems like you are going to be very busy with your plans of making people more aware of CC. Busy is good because it doesn’t leave you much time to dwell on what might have been. I know your Dad must have been very proud of you, and I can also tell that your Dad was very special to you. Prayers coming your way, PeggyP
I know you and your family are going through a devastating time right now. Please know that others feel your pain and will support you through this. Your husband is free of his pain and is at peace now so may you find comfort in that. Many hugs coming your way for you and your children, PeggyP
Great news about your scans and here’s to many more years of hearing good news. Hugs, PeggyP
Hang in there and it will be over before you know it. Good luck with your scan tomorrow. Hugs, PeggyPMarch 26, 2012 at 4:06 am in reply to: Intrahepatic CC stage lV newly diagnosed what do I do next? #59425
My husband was diagnosed with Stage IV ICC in August ’08. He had a resection but two spots showed up on the part of the liver that was not removed in Dec. ’08. Not knowing what they were, the doctors decided to wait until his next scans. In March ’09 he presented with multiple tumors.
We were told that chemo and radiation were not options so he did not have any after surgery. We both wish he had. Chemo was started in April ’09 and he has been on three different chemo cocktails. We had good results with Folfox but had to discontinue that after 18 cycles due to an adverse reaction to the oxaliplatin. Then on to Gem/Cis until that affected his remaining kidney function. Last chemo was Xeloda. He had a chemoembolization four weeks ago and is scheduled for another one on April 17. My opinion is to try whatever is available to you. My husband is still able to enjoy life; he tires easily but knows his limits. We are raising a 14-yr. old girl and 9-yr. old boy who are very active in sports. My husband tries to make all of their games but sometimes isn’t feeling up to it. I believe the kids are what keeps him going because he enjoys seeing how they change from year to year and what all they accomplish. My husband was in good health prior to CC so I guess it would depend on your health, age, outlook, etc. as to which choice you make. By the way, welcome to our family, PeggyP
As Marion said, seek another opinion because another doctor may have more experience with CC. I am curious as to why they chose Xeloda. My husband started with Folfox, then Gem/Cis and his last chemo was Xeloda. Ask about the Y90 theraspheres radioembolization or chemoembolization. One of these may be an option for your dad. My husband was diagnosed Stage IV ICC in August ’08 and refuses to give up the fight. He had the chemoembolization done four weeks ago and is scheduled to have another one April 17. Never give up hope. PeggyP