1

(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

2

(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.

3

(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!

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

5

(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!!

6

(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.

7

(28 replies, posted in General Discussion)

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

8

(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.

9

(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.

10

(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.

14

(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.

pam,
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

16

(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.

17

(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

(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.

19

(18 replies, posted in Chemotherapy)

thank you for the good wishes. we did get good news today at our appointment with oncologist. dr said he doesn't believe what is shown in ct scan and mri is a tumor. he won't guarantee it but said it appears to be a blood vessel. no new tumors were seen either. he did say her liver appears to be damaged some but believes that to be due to the chemo. has anyone ever heard about this. after we got this good news. we asked what now. dr said we have two options either rest and wait and see if tumors return or follow thru with the oxiliplatin and xeloda. our first thought was lets wait and see. she has had such a difficult time with the oxiliplatin why not take the break. but than we thought the cancer had spread after the first surgery/chemo/radiation so if it is metastatic we want to try to kill the cells wherever they are now before more spreading occurs. the mri was only done on her liver and abdomen. we asked for full mri but insurance wouldn't pay for it at this time. this is all so complicated. we finally felt it was best to continue with chemo. dr said there would be one more cycle of oxi and xeloda. the confusion is originally they said it would be four to five cycles, than they said we could stop altogether and than they said they would do one more cycle which would bring her total to three. does anyone know if there is any standard of length for this chemo protocol. we don't know if we are making the right decision about going through another round of chemo but another thought we had was if we complete this and God forbid the tumors return we will at least know this chemo doesn't work for her. we would hate to not know that and than they decide to use it again after a break when it might not work. you can drive yourself crazy trying to figure out what the right decision is.  the chemo doesn't start again until next monday so we have time to think and change our mind. i would appreciate everyones opinion on this. for the rest of this week we are just going to enjoy and celebrate the good news we got today.

20

(18 replies, posted in Chemotherapy)

appointment today at 3:30 for results of mri. just praying that what was seen on ct scan is nothing.

21

(18 replies, posted in Chemotherapy)

my sister has been on this treatment for two cycles with severe side effects that i have talked about before. last week they gave her an additional week off because she was having a lot of pain in her stomach. a ct scan was ordered and yesterday we got the results that they "see something near her liver" they claim they dont know what it is and have ordered an mri on wednesday. they have stopped her chemo until they get these results saying they arent sure if this protocol is working. when they say something like "seeing something" or "we dont know if it is working" it shows how little i think they know about this terrible disease. the dr said they are not going to give her the oxiliplatin again because of the side effects and will just keep her on the xeloda. i dont know what to think about all of this and i am trying to stay positive. so much more research and attention needs to be paid to this cancer but it is not getting the attention of the medical community and i dont understand it. right now my sister is feeling the best she has in a while since she hasnt had any chemo in two weeks but is that allowing the cancer to grow in the meantime. i guess all we can do is pray that a cure or even a more effective treatment can be found. we are praying the mri comes back with good news. it would be nice to get some of that kind of news sometimes.

hi cindy, i hope you are doing well with the oxiliplatin/xeloda. my sister has had a hard time with it from the beginning. her side effects have been severe and started immediately after the first infusion. after her first appointment we were leaving and she took a sip of water that wasnt even cold and immediately she couldnt breathe. they had to take her back into the office and get her stabilized. when she touches something below room temperature her hands cramp up and she has to massage them to get them moving. one time she went outside for a walk and her eyes actually shut and she couldnt get them open. she had to put her arms over her face until it got warm enough and they opened. for the first day or two after infusion she is almost paralyzed. her movements are extremely slow. after that those side effects subside but she still has the nausea. it has been very difficult. she has had two rounds so far. she was suppossed to have round three on monday but they have given her an extra week off because she is having a lot of pain in her stomach. dr isnt sure if it is a side effect or it could be a hernia. they did a ct scan and we are waiting for the results. since you had your first infusion last friday it sounds like you didnt have the reaction she had which is great. i hope you will continue to have success with little discomfort from this combo.

hi tiffany,
i am sorry you are having some problems. as far as xeloda goes here is what i can tell you. my sister is currently taking xeloda and oxiliplatin. the xeloda she takes a pill twice a day every day for two weeks and than one week off. the most notable side effects she is having are cracking of her hands and feet and sores in her mouth. use plenty of cream even prior to starting the medication to help with the cracking. as for the mouth problem they say to suck on ice chips but we dont know if it is a reaction to the xeloda or oxiliplatin but she can not tolerate any thing cold. also, my father in law has colon cancer and thy have prescribed xeloda. his oncologist told us about the side effects mentioned but added that even in spite of that it is one of most tolerable of chemos. if there can be such a thing.
take care of yourself.

24

(15 replies, posted in Insurance)

yes we did look into disability insurance but there is a two year wait from the time you apply until the time you are covered. it is a very scary thought of losing your health care while dealing with this disease.

25

(15 replies, posted in Insurance)

oncologist has stopped chemo for the time being as the side effects have become too severe. she cant really eat because the xeloda has caused sores in her mouth and than if she does get something down she throws it back up. also she is having a lot of pain in her stomach. she cant go back to work this way and she is worried they will fire her and she will lose her insurance. they have already changed the policy and if she is hospitalized it will cost her 400 per day. we checked with social security and she wont be eligible for insurance until at least august. i am trying to ease her fears about the insurance but havent been able to find too many answers on line so i am putting it out to my friends here. can the job fire her and take away her insurance as she has been diagnosed with cancer while working there and has been being treated for a year and half. i read the insurance company can not drop you unless you reach the max of the insurance but dont know if this applies to being fired.