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.


(7 replies, posted in Thought for the Day)

I just wanted to send best wishes for the new year 2015 to all the people on this site. As we all continue to battle this disease as either patient or caregiver we have to believe the answers are there for better detection and better treatments. Let us all hope and continue to pray that this is the year a cure is finally found. May God bless each of you.


(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.

hi jennifer,
my sister was on the gemzar oxiliplatin treatment. she did have bad side effects while on it. the neuropathy in her hands an feet wasnt severe but was bad at times. she also had a bad reaction to the cold. it is a very difficult treatment but so far it has been effective. she stopped her cycle in the summer and so far thank god all the scans she has had since than have been good. her first treatment with the 5fu did not have the same effect. as soon as she stopped that chemo they found more tumors. hang in there with your mom and all the advice here is great. gloves, warm drinks, stay inside as much as possible and know that the side effects will go away after the cycles of chemo are completed.


(1 replies, posted in General Discussion)

its been a while since i have been able to write. some reasons are good others not. the good is my sister is doing well. she completed her oxiliplatin-xeloda regimine in august. so far with the exception of a couple small spots in her lungs everything is as good as can be expected. we all know you are never out of the woods with this disease. it is constantly trying to regenerate itself. right now drs are in a wait and see mentality. she will have another scan end of feb or early march and we pray it will be good news. we have been enjoying quality time together since her side effects from the chemo have subsided. our sister came to visit for christmas and it was great that my sister was healthy and vibrant for our visit together. no chemo or surgeries this time. on the bad side my mother and father in law have been consuming much of our time now. he has stage iv colon cancer and has been in and out of the hospital and my mother in laws memory is getting worse so we are there a lot of the time trying to keep them as healthy as possible. they are both in their mid 80's. just wanted to let you all know that even though i dont write often i am still praying for everyone affected by this disease. i hope we all have a happy new year and pray that 2013 brings a cure. happy new year.

i am so sorry to hear your news. i know you cant help but worry. try to think positive and continue be the great support for lauren that you are. my sister had a spot on her liver and they were concerned it was a new tumor but it turned out to be a lesion.  i will pray for a good result.
take care


(18 replies, posted in Chemotherapy)

had some great news yesterday. my sister went for her ct scan and it was clear! she will get the summer off from chemo and go back in 3 months for another scan. even though we know this cancer is always lurking around the corner we are going to try to relax and enjoy the summer.


(18 replies, posted in Chemotherapy)

haven't had much to update lately but yesterday my sister had an appt with oncologist. she completed her cycle of oxiliplatin and xeloda about two weeks ago. after initially having severe reactions to the oxiliplatin they lowered the dose for the final round and it was much more tolerable. they have now scheduled a ct scan for the end of june to see if anything shows up. we wanted the test to be sooner as it will be well over a month since chemo stopped when the scan is done. we are praying for the best. we had a nice memorial day weekend and are planning a busy summer full of health and happiness. we just have to keep moving forward.


(18 replies, posted in Chemotherapy)

my sister started round 3 of chemo yesterday. they did lower the dose and gave her benadryl to try to alleviate the side effects she was suffering. something worked because she tolerated the oxiliplatin much better this time. our question was is the lowered dose strong enough to do its job. they really couldnt answer. we will just have to wait and see. there are always questions in your mind about if your making the right decision. have to try to push them out and keep thinking positive and praying for success.