pamela

Hi Laura,

I wanted to welcome you to this site. I am sorry to hear you have CC, but you are definitely at the right place for support, advice, and friendship. My daughter has CC and has been on all the chemos you have mentioned, gem/cis, just gem, 5FU, and Xeloda as well as oxaliplatin. I think 5FU was the easist for her to tolerate, but is kind of a pain because you have to carry it around with you for 48 hours. Her oncologist switches hers when the chemo starts not being as effective. She has been on gem two different times, so they can go back to one with a different combination. My daughter has been doing this for 18 months and is set to have surgery March 25th. She was told at first she was not resectable, but things change.

As for diet, Lauren did eat what she wanted and what made her stomach feel good, but gained a bunch of weight plus she was inactive. So now we are eating very healthy, and she feels great. She can still have whatever she wants, but is making smart choices. Since Feb. 11 she has lost 14 pounds. She is also walking every day on the treadmill. She is up to 25 minutes and we are trying gradually to get up to 60 minutes a day.

There is no excuse for what that nurse said to you. There are always going to be people that don’t think and say the wrong things. I’m sure she meant well, but said it in a dumb way.

I hope I have covered everything you are concerned about. It is so scary, but as you go on things settle down a little and I hope it does for you. Please keep us posted. All the best.

Love and hugs,
-Pam

Gerardo,

What a beautiful lady Ginger was. The tribute video was very moving. God bless you, Gerardo.

Love and hugs,
-Pam

Hi bnanagirl,

Welcome to this site, but I am so sorry you had to find us. I too feel you are on the right track to seek a 2nd opinion when a doctor says there is no hope and doesn’t even try to help. I agree with Susan that you should seek the largest, most reputable cancer center that is very experienced with cholangiocarcinoma. I think it is up to the oncologist to decide which chemo will work best for each patient. In my daughter’s case, she has always participated in clinical trials when offered to her. If something doesn’t work, then there is something else to try. Make sure to ask for pain meds if needed. The most important thing is to find a doctor you trust to be looking out for your Mom’s best interests, talks and explains everything to you so that you understand, and is compassionate. I was excited when I read you were from Shaker Hts. I would have suggested for you to take your Mom to University of Michigan for treatment. My daughter gets the best care there. But then I see she is in California, so that wouldn’t work. I know Marion will probably be around to direct you to the best cancer center in Cali. I think everyone will feel better once you find a cancer center and oncologist you like. All the best to you and your Mom.

Hugs,
-Pam

Hi milenzz,

You must be very young having a Mom that is only 45. Bless you for caring so much for her. My daughter, Lauren has CC. She is only 26. She had liver pain while on chemo. She always said her liver hurt a lot after having chemo. We figured it was the chemo doing it’s thing! Your Mom should have pain meds. Nobody should ever have to suffer with pain. Lauren has morphine, fast acting morphine, and hydrocodone. Some people don’t like to take medications, but they do help. She takes a long acting morphine every 12 hours and fast acting for breakthrough pain. She doesn’t feel the hydrocodone does much for her so she doesn’t take it much. Lauren has a lot of back pain as well and that is mainly why she takes the morphine. I think her liver gets sore when she is sitting up a lot. Her liver is really big. It feels better when she lays down, but how practical is that when you want to be an active member of society! Don’t give up hope because Lauren was unresectable for 17 months, but recently has been put on the schedule for a 2 part resection. Her first surgery is March 26th!! If all goes well, she will have the big kahuna surgery 6weeks later. Please tell your Mom to ask for pain meds. I can’t believe they haven’t been offered to her. Well, take care and I wish your Mom all the best.

Love,
-Pam

Hi Cristerry,

My daughter, Lauren has been on oxaliplatin and 5FU( that is the one you wear at home) at one time or another. Oxaliplatin is the rougher of the two. Lots of neuropathy in hands, feet, and throat. You cannot drink cold drinks with this chemo or it feels like shards of glass or your throat is closing. Wear gloves when handling cold food or frozen food. My daughter had an allergic reaction to oxaliplatin on the 6th treatment of that particular chemo and cannot take it anymore. She turned beet red, thought her throat and ears were closing, and broke out in hives all over. This is not uncommon for this chemo so be aware of the signs generally around the 6th or 7th treatment. 5Fu is relatively easy for Lauren to handle. Wearing the pack is a pain, but the chemo was ok. I also was trained by the nurses to disconnect Lauren myself at home, which was a lot more convenient. She hasn’t had the other two chemos so I can’t comment on those. I am wishing you and your husband all the best.

Hugs,
-Pam

Hi Susan,

I would also like to welcome you to this site. I’m sorry to hear about your husband, but you have come to the right place for comfort, information,and friendship. I’m sure it is very hard keeping your husband’s illness a secret, so hopefully it will help you to talk about things here. I hope your husband decides to tell people about his illness because I am sure he would be met with so much support. I think men have a hard time opening up sometimes and some view illness as a sign of weakness and worry that co-workers won’t think they can handle their job. Sadly, some do get really sick and have to leave their jobs. My daughter cannot work anymore and is on disability. That doesn’t mean she is weak. She is so strong, positive, and hopeful. I wish both of you all the best. Please continue to visit us.

Love and hugs,
-Pam

Dear Marinmommy,

I am sorry to hear your Dad has passed. Try not to think about the what-ifs. Focus on the fact that your Dad is no longer suffering and is having a great time in heaven. I’m sure it is more than difficult not to have his physical presence, but he is still with you in spirit. Please take care.

Love and hugs,
-Pam