my sister has been living with this terrible disease for 6 years now. she is still fighting it. it keeps spreading and she keeps fighting. it has now most recently appeared in her colon. this fight is tiring. she will be starting chemo and radiation again soon. hopefully it will work. i don't get to post much anymore as besides my sisters cc my mother in law has alzheimers which keeps us busy as well. i hope they can find a more effective treatment for my sister soon.

my sister had her first ct scan since re starting xeloda in november. the news was good. the tumor on her pelvis actually shrunk 3 mm and the rest of the tumors remained the same. would have loved to have seen them all shrink and go away but we will take any positive news we can get. she is now one week on one week off xeloda. they did drop her from 4 pills a day to 3 to help with the side effects. her appetite still isn't good and  while her hands and feet are cracking it seems to be a little better. her spirits are better with the latest results. hopefully the good news will keep coming when she has her next scan. now we are prepping for the big snow storm on saturday. to everyone on the east coast stay safe and warm.

thank you to everyone for your positive thoughts and prayers. today will be a difficult day. our sister who lives in sweden came to visit for the holidays and is going home tomorrow and as i said chemo starts monday. it was such a good few weeks being together. we said a toast on new years eve that we will all be together again for next new year. i now pray that our dream will come true. thank you again and my positive thoughts, wishes and prayers are sent to all of you here as well as those who are dealing with this awful cancer who haven't found our group of wonderful people on this site yet.

another year has begun. my sister has been dealing with this disease for over 5 years now. they had to stop chemo over the holidays as the side effects to her hands and feet from the xeloda were very bad. the good news was she was able to enjoy christmas and new years. the bad is there is no treatment right now so we dont know how her cancer is reacting. she will start again on monday with no guarantee the chemo will do anything other then make her sick and cause the awful side effects. after 3 weeks they will do a ct scan to see if it has helped control the spread of this disease.
the new year brings hope for at least better treatments. i want to spend many more new years days with her. i pray that some doctor or researcher will find the cure for her and everyone who has his horrible disease. best wishes to everyone on this board for a happy, healthy and blessed 2016.

i dont know if your father is taking xeloda but my sister is and she too is having a bad case of hand foot syndrome. however where your father is sleeping most of the time my sister has terrible insomnia. definitely check with your dr. as i said in another post a couple weeks ago my sister looked good and was laughing and traveling. since being on xeloda she has taken a 180 degree turn. chemo does a lot of things to people and each person reacts different so talk to the dr as soon as you can and get an accurate evaluation.

hi thank you for your advice. my sister does want to stop chemo. the side effects with the xeloda this time have been horrible. the cracking of her hands and feet is very worrisome. she can hardly bend her fingers or touch anything. the insomnia is also awful. now she is saying she is having pains in the area of her liver and kidneys. its a shame because a couple weeks ago when she wasnt on any chemo she was doing much better. i dont know if anyone has suggestions on what to do for her hands and feet but i will let her know any advice that is given to us. thank you so much.

hi everyone. i am looking for some advice. my sister has been taking xeloda for about a month now. this is her second time around with xeloda. this time it is a higher dosage. she has had some bad side effects from the chemo. mainly it is the cracked hands and feet and when she is taking the meds she has terrible insomnia. she has been searching the internet and keeps reading about eating organic foods and avoiding red meat instead of chemotherapy as an effective treatment for cancer. she wants to stop taking the chemo and instead go to this strict diet. has anyone tried this diet? i dont know what to say to her. should i go along and support this diet or should i tell her she needs to stay the course with the chemo? i would really appreciate any advice anyone has on this topic.
thank you all.

my sister's cc has spread to her pelvis, ovary, and lungs. she has had surgeries to remove tumors from pelvis and ovary. she had one surgery on her lung to confirm cc. as more spots have shown up they told us they can no longer do surgery. she now will just get chemo and hope it works. i say this to let you know that doctors can and do operate on other areas if they think it will be helpful to the patients quality of life. in my sisters case, it has been 5 years since she was diagnosed and she has had 4 surgeries and we would say that because of them she has earned some quality time allowing us to do a number of things together. we are very worried about the chemo that she will now be getting but just have to wait and see how it goes.

hi mizzey, I do agree that you should let your sister choose the best path for her treatment. you can tell her what you think but ultimately it is up to her. my sister has been dealing with this disease for 5 years now. she has been thru 3 surgeries, different chemos and radiation. we thought things were going good but we just got her latest test results and the cancer continues to spread. it is a frightening thing to go from good reports to difficult ones almost overnight. we are looking into clinical trials now as my sister wants to continue the fight. we support her decisions as we move thru and offer advice but not to the point of pressuring her. we continue to pray for a cure and hope for better treatments. that is the reason she continues to fight. she holds out hope that the researchers will find a cure. my advice would be to enjoy everyday. when my sister hasn't been doing treatments we have gone places together and just spent time together. we recently went to visit our other sister in Sweden and had a wonderful time. hang in there and just be there to listen to your sister and enjoy each others company. that will be a big help to her. she is blessed to have you in her corner.

hi michelle, i would recommend talking to your surgeon. my sister had her first resection and then gem/cis. the cancer came back and she had a second surgery. she then had a second round of chemo. the cancer then spread to her pelvic region and she had a third surgery. she recently went thru a round of radiation for a pelvic tumor. she may not be eligible for any more surgeries but you should know that multiple surgeries are possible. you have to keep fighting this cancer. it doesnt give up. if the drs cant do another surgery maybe targeted radiation could be an option to shrink the tumors.  your sister sounds a lot like mine. my sister never complains. when she is on breaks from treatment no one would know she even has this disease. dont give up. we have been fighting this for over 4 years now. stay positive. always be willing to look for 2nd 3rd or 4th  opinions. we have gone to a number of drs looking for the best options. i


(5 replies, posted in General Discussion)

Thank you all for your great wishes. we appreciate all the positive thoughts being sent our way. i am sorry i dont post as often as i used to but we seem to always be running one way or the other. its either to the doctors for tests and treatment or when that is over we try to spend as much free time as possible enjoying the break from treatment. in the meantime my husband and i are busy with my mother in law who has alzheimers and cant be left alone. its been very hectic the past year with her. very sad to see someone's memory just slip away. but as i said we take our victories where we get them and right now its with my sisters doctors report so we are just going to enjoy it. you are all always in my thoughts and prayers. this website is such a comfort to us and the well wishes really boost our spirits. i will definitely let everyone know what happens after the next scan. THANK YOU AGAIN!!!!!!


(5 replies, posted in General Discussion)

Hello everyone, i just wanted to check in and give an update on my sister. she had scans done on monday and met with the doctor today. we got some good news. we were disappointed that the tumors in her lungs did grow but at least it was only by 2mm so i guess we can consider that a victory. and then after 6 weeks of radiation they have seen a decrease in the size of the tumor in her pelvis. the best news of the day was no chemo for at least 3 more months. she will go back for another scan in three months and see what happens. we are a little concerned that she is experiencing pain in her abdomen but scans didnt show anything. so we are just going to enjoy more time together. we can now plan a trip to visit our other sister in June. we just keep hoping if we can push this further and further down the road maybe some more effective treatment options will be discovered. i continue to keep all of you in my prayers. Take Care everyone.

I haven't posted much lately. just running a lot. when my sister is getting treatment we are busy with that and when she isn't we are busy enjoying life. I did want to post some good news. in the fall they found another tumor in her pelvis that was growing. she was hoping for another surgery. its kind of funny when you are asking for surgery. unfortunately the tumor was in a dangerous area. it was about 3.5 cm when the drs decided to do radiation. she went thru 5 weeks of radiation around thanksgiving and she just had a ct scan last week to see if it was effective. the tumor is still there but it hasn't grown which is good news. we thought dr was going to recommend chemo but he was happy with the ct results and suggested we wait and do another scan in 3 months. any time the dr says no chemo is a good day.  another ct scan in the spring and just see what happens. hopefully it will stay where it is. got to continue to have hope the longer she fights the more chances that a researcher will find a better treatment or some day a cure.


(28 replies, posted in General Discussion)

thank you again valwong. your insight is very helpful and i am going to pass the information to my sister so she can talk to her drs


(28 replies, posted in General Discussion)

thank you valwong. your fathers case seems similar to my sister. i have concerns about the chemo treatment they want her to take. it is very strong and they dont know if it will help. how long did you try chemo before switching to radiation? was the radiation effective at keeping the tumors from growing?
thank you again for the advice. we are looking for a third opinion now. she really doesnt want to go thru chemo again.


(28 replies, posted in General Discussion)

thank you all for the encouragement and advice. i am not familiar with foundation one. my sister is being treated at UPenn. we have also been working with fox chase. it was fox chase that said she has a mcl 1 mutation and to look for clinical trials dealing with that type of mutation. still no luck but i keep searching. i will look more into foundation one and see if they can help. thank you kris!


(12 replies, posted in Good News / What's Working)

that is wonderful. it is always great to hear good news!!! i am so happy for you.


(28 replies, posted in General Discussion)

thank you for the good wishes! the doctor did remove one of the tumors and the preliminary report is that it is cholangiocarcinoma. not a big surprise but now the question is what to do next. he said there are other small spots on her lungs. they are not sure if they are cancer too. she still has a tumor in the other lung. the surgeon and oncologist are going to meet. they may decide to remove the other tumor or they may say to do chemo. i don't really know what to hope for anymore. as i said before, this is her 4th surgery and every time they remove it from one place it comes back someplace else. it won't just go away!!


(28 replies, posted in General Discussion)

my sister is going to have surgery tomorrow. she has a tumor in both lungs. the doctor is going to remove the tumor from the one lung and than they will check it to see if it is cholangiocarcinoma or a different cancer. from what he told us if the test comes back negative for cc than he will remove the other tumor in a couple weeks. if it is cc than the only option would be chemo. this will be her 4th surgery in 4 years and 2nd in 6 months. it just won't go away!!! i don't know how she does it. to look at her and  talk to her you would never know she even had cancer let alone what she has gone thru. we are trying to find some clinical trials. dr told us she has mcl1 mutation and to look for clinical trials to deal with that mutation. so far haven't found anything.


(28 replies, posted in General Discussion)

hi lainey,
thank you very much for the information. i will pass it along to my sister.


(28 replies, posted in General Discussion)

i just wanted to post the results of our second opinion. we met with dr today. i hope this will help jetcm with his wife. it may be something to discuss with her doctor. we were given a few options. one was because her tumors were small and located kind of in a cluster in both lungs and not scattered throughout her lungs that surgery could be done. it does have risks but don't all surgeries? the second was for cyber knife which sounded like a good option to us. the third was chemo but he told us the two chemos i mentioned previously while being given for lung tumors he didn't feel they would be too effective with cholangiocarcinoma tumors. finally he said to look into clinical trials. he said my sister has the mcl1 gene mutation. he thinks this mutation is the cause of her problems and if they can find an effective treatment to suppress this they may be able to help her more. so far i have found nothing on any clinical trials but i will keep looking. the bad news about the visit is the concern of a spot in her pelvis. they are hoping it is scar tissue from a surgery but if it is cancer he said the surgery wouldn't be the primary choice for treatment.
to jetcm. please ask your wifes dr if cyber knife or surgery is an option. my sister has had 3 surgeries in about 4 years. they are rough but they have given her more time and a good quality of life. more time is what we hope for so that maybe better treatments and a cure can be found.


(28 replies, posted in General Discussion)

just wanted to post what my sisters oncologist has suggested for treatment of her lung tuners. he says he thinks the chemo's vectibix and erbitux may be the best treatment. i have briefly looked up these chemos and they appear to be used mainly for colon cancer that has spread. my concern with these in my short time researching it is that both have side effects that refer to lung disease and difficulty breathing. we are going to get a second opinion about treatment options so hopefully i will have more info soon.


(28 replies, posted in General Discussion)

i dont know how common it is but my sister also has tumors in her lungs. the drs hadnt really been concerned until the scan she had last week. the tumors were very small. they now seem to be growing and more are appearing. i am not sure what the next plan is but i wanted to let you know that you are not alone in this. i hope and pray things work out well for your wife. when we get a plan i will post it.

i am sorry you are having a hard time with this chemo. the oxiliplatin can be rough. my sister had that. it was very strong and she had some side effects but she pushed thru the cycles and it did help her. the side effects went away after her treatments and she has been doing pretty good since she finished. a pity party every now and than is needed. this is a tough battle so its always good to come to this site and get out your frustrations just as long as you remember to always keep fighting.  hang in there and stay strong. i will keep you in my thoughts and prayers.

my sister had the gem/cis chemo and that didnt help much. the side effects were minimal but after completing the cycle she had a new tumor and had to have another resection surger. the dr than tried the oxiliplatin/xeloda combo and although the side effects were difficult she has at least had some success by her ct scans not showing any tumor growth after 5 months since completinig the cycle. she is due for another ct scan in feb.  it is a difficult decision as each person reacts to the oxiliplatin differently. these decisions are never easy. i wish you all the best.