sallypa
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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.
appointment today at 3:30 for results of mri. just praying that what was seen on ct scan is nothing.
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.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.
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.
cindy, i hope that you wont have the same reaction my sister does. the good thing if there can be a good thing the severity of the effects lessens a day or two after the infusion and continues to lessen between infusions. wear gloves and try to drink liquids at room temperature. also if it is cool outside stay indoors for a couple days after the appt if you are having the side effects. i wish you all the best.
thank you jathy for the information. can i ask you about this drug thing. you say it doesnt favor the patient but if you dont take it you are penalized? is that true? are you using both your own insurance and medicare. we are hoping my sisters insurance will continue but we dont know when they will decide to stop it.
my sister is having a tough time with the xeloda oxiliplatin. it started tuesday and the side effects have already presented themselves. she has lost 4 pounds so far due to the nausea. touching even cool things have caused her fingers to cramp up. she put a piece of room temperature watermelon in her mouth and her tongue froze up. she went outside to try to take a walk and her eyes closed and she had to put her hands over them to warm them up so they would open enough to get back inside. its odd that cold things bother her but she isnt cold. she is wearing short sleeves and is comfortable. i cant believe the side effects after only 3 days. what is this going to be like in a month. we are going to contact the oncologist and see what he says. she is wearing gloves but says that makes her hands sweat and they are only thin cotton gloves. i feel so bad but i dont know how to help her.
chemo started yesterday. my sister had an immediate reaction after the oxiliplatin. she took just a sip of water and had a bad reaction. she said she felt like she couldnt breathe. the nurses helped her and after about 15 minutes she left. on the way home she had bad stomach pains and went back to the hospital. they monitored her again and sent her home. she cant open the refrigerator or touch anything cold. ct scan came back with no tumors visible. after her first surgery we would get excited about the clean scan but now there is always questions in the back of our minds as the ct scan doesnt always give an accurate reading.
thank you to everyone for your advice. i have been telling my sister everything everyone is writing me. thank you eli. i am going to pass this article along to my sister.
hi,
my sister is just starting the xeloda-oxiliplatin regimen. we went to fox chase cancer centers last week and were told about tarceva. it is something that from what i was told would not be used while she was on chemotherapy. the oncologist told us to have her complete the xeloda-oxi regimen and than come back and they will see where she is and will discuss tarceva. i dont know what this all means but here is more of what the dr told us. tarceva is a protein blocker. if the tumor is found to have the certain type of protein that tarceva works on than it is helpful in keeping tumors from growing. there is a test called a EGFR test that can be done on a previous tumor that was removed. the results of this test will tell if tarceva is a viable option. we were told that this test usually isnt done in most hospitals and you will have to discuss this with your dr. i hope some of this helps.had a meeting at fox chase. they concurred with oncologist at upenn and for now they also recommend the xeloda-oxiliplatin. he said if this doesnt work he wants us to come back. in the meantime he asked her to do a couple tests and he wants to review them to see if he feels tarceva would be a possibility. hopefully we wont have to go back and the xeloda-oxi will work. insurance in this country has to be revised. $5000 for tarceva. the medicine companies are out of control. also dr at upenn ordered pet scan for my sister and insurance said they will not pay. they will pay for a ct scan and if something shows up they will pay for a pet. my sister had numerous ct scans after her first surgery that showed nothing. mri done much later showed multiple tumors. dr even admitted ct scans dont always show tumors. why does an insurance company get to tell a dr what he can and cant do for a patient. they are far too powerful and should be reigned in. anyway let me get off my soapbox. we are going to upenn tomorrow and after meeting with oncologist chemo will most likely start.
i am so sorry for the mistake. i mixed up my drs email and dr javles. it is mjavle@mdanderson.org
after meeting with oncologist chemo was put on hold until scan can be done. he is going to do either pet or ct scan and see if any tumors have returned. there just doesnt seem to be any confidence in the xeloda oxiliplatin treatment. oncologist said it is used on pancreatic cancer so they feel it should work on cc. he admits that there is not enough research being conducted on cholangiocarcinoma. my sister is going to meet with another dr who thinks she might benefit from the drug tarceva. i dont know if anyone has any information on this. from what i see it looks like it is experimental. however it is approved by the fda so insurance will cover it.
