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.
Re: Haven't been here in a while . . . . Update on me. (46 replies, posted in General Discussion)
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.
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.
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.
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.
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.
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.
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.
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.
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.
i dont know if any one can help me but i thought i would put this out there and see. my sister is having a very difficult time with the oxiliplatin and xeloda chemo treatment. the side effects have been severe and so far oncologist just says it is normal side effects. the day she gets her oxiliplatin is horrible. we have asked if she can stay in the hospital overnight because of the side effects. they tell us no. aside from this what our concern is right now is her health insurance. she has been out of work since december when she had her second surgery. so far her job has been very helpful. she has missed significant amounts of time over the past year and a half since she was diagnosed. she is collecting disability and they are still providing her health insurance. she is worried that sooner or later they are going to tire of this and fire her and she will lose her insurance or she will simply max our her insurance benefits and be dropped. i was reading on the social security website that if you receive disability benefits for 24 months you automatically enroll in medicare. she is going to look into this and see if this is an option. does anyone know what medicare pays for and what are the out of pocket expenses. it is such a mess. you are trying to deal with this horrible disease and than have to worry about the expense. i would appreciate any help.
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.
my sister went to a nutritionist a few weeks ago who told her to stop eating anything with sugar including fruits. she should only eat raw vegetables, fish, and some lean meats. i know it is said that cancer feeds off sugar but i believe that is true for processed sugars. blueberries, strawberries for example are suppossed to be cancer fighters and they contain sugar. she is starting chemo again and i am concerned about the diet she is being told to follow. she believes in this nutritionist so i am having difficulty explaining this to her. her oncologist told her to eat healthy as she needs her strength. he did tell her to avoid supplements that have calcium in them. i was just wondering what everyones thoughts were on this sugar issue.
Re: Xeloda & Oxaliplatin w/Tarceva possible addition??? (4 replies, posted in Chemotherapy)
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.