sallypa
Forum Replies Created
-
Posts
-
thank you all for the support. leeann, dr javle email is drjavle@mdanderson.org
he is very interesting. we actually emailed him last night at 11:30 pa time and he responded almost immediately. in my sisters cases he told us to start chemo as soon as possible. i hope everthing works out for you.my sister is going to oncologist tomorrow. he wants to start xeloda-oxiliplatin tomorrow. i am not too confident in this treatment. we are taking the one study i found that showed this regimin was not so effective for intrahepatic cc. i hope he has a good answer why he still wants to go with this regimin. the other advice we got was for gemzar-cisplatin but either way we were told we need to start as soon as possible. we are praying this will work.
my sister is about to start the same chemo treatment tomorrow. i have searched and searched for info about the xeloda-oxiliplatin treatment. i cant find much information on this. i found one small study that said this treatment showed positive results for extrahepatic cc but not intrahepatic cc. we are taking the study to the oncologist tomorrow to see what he says. i will post what ever we hear from him. i also found a clinical trial study that looks like it hasnt started but they are going to test xeloda-oxi vs gemzar-cisplatin to see what is more effective. it seems like they dont know much about the xeloda oxiliplatin combo yet.
i emailed dr javle and he responded almost immediately. he said my sister should start chemo immediately. he said gemzar cisplatin is the standard but xeloda is acceptable. i want to ask him for a little further explanation of acceptable. i did add a new topic to get some opinions on xeloda oxiliplatin vs gemzar cisplatin. my thanks to lainy and derin for the help reaching dr javle.
hi kris,
thank you very much for the information. i will look into it. the treatment they are suggesting now is xeloda and oxiliplatin.hi derin,
thank you so much for the email addrress and advice to contact dr javli.
my best wishes to you.hi derin,
my sisters case is very similar to yours. she had her second surgery in december and they have prescribed gem/oxiliplatin. i see lainy mentioned me to you on this post. i would really appreciate if you could tell me dr javle’s email. i found him on the internet and on md andersons website but not his email address. my sister was given radiation and gemzar after her first surgery. unfortunately the tumors came back and now they want to try gemzar and oxiliplatin. she goes to university of pennsylvania cancer center for treatment but we are looking for second or third opininons. i wish you all the best with your treatment. do you know if they got a good margin in your surgery. my sisters original tumor was very close to the main vein so they couldnt get a clean margin and they believe that is why it came back. take care!thank you for the advice lainy. i am searching the site to find email address for dr javli. so far havent found it. we asked sloane if we could email someone just to get an answer about chemo regimen that was offered at u penn but they said no.
not too much luck with sloane today. we tried everything. called different doctors, begged, pleaded. nothing! all appointments go thru the scheduling dept. everywhere we called we were directed back to scheduling. they gave us an appointment for february 28. we asked if a dr could just review the file we sent and make a decision if a dr wants to see her sooner. no luck. very frustrating. i dont understand this process. they ask you to send them all these records before giving you an appointment for a dr but no one apparently reviews these records until you get there. now we have to try to come up with the decision to wait or go ahead with chemo at u penn. it was a long upsetting day.
thank you all for the advice. we are back to the phones to battle with sloane again. what it now seems to be is they are saying is if you need chemo fast than go back to university of penn and start. if you want to wait than you can come here in five weeks. we are trying to find someone who will move the date up. they put us in a difficult decision. do we wait 5 weeks for a second opinion and maybe its the same as u penn or do we start chemo now and maybe miss a better treatment. my sister had her second surgery on dec 15 and they removed 5 tumors. the surgeon said he got all the tumors. they are now talking about microscopic cells that may form more tumors. u penn oncologist did say we could wait and see what develops or try the chemo now.
it is a terrible decision to have to make. either way you are left to wonder what if i made the wrong choice. again thank you all very much.we really dont know what to do. it was such a shock when the oncologist told us he didnt think chemo would help. he offered to give her xeloda and oxiliplatin if she wanted to try chemo but he said the side effects would be severe and may not be worth dealing with for such a small chance of benefit. i feel we have no choice but to get other opinions. at the same time we dont want her to suffer for no benefit. it is a very difficult time. i dont know how she deals with the stress as well as she does. we are just praying for a miracle.
had appointment with oncologist at university of penn yesterday. he said her cancer is metastatic and he doesnt believe doing chemo will help. he said the side effects for the chemo will be bad and said it is up to us if we want to start it. my sister had her second surgery in december and he said that is rare because they usually dont operate when the cancer is spreading. she had 5 tumors removed. his theory now is to wait until tumors return and than they will treat that. but he made it sound hopeless.
i have some more information about the treatment plan for my sister and i hoping to get some advice from the friends i have here. the oncologist at university of penn spoke of three different chemo protocols. xeloda, gemzar and 5fu plus oxiliplatin. my sister was given 5fu with the radiation treatments she received after her first surgery. that was followed by six months of gemzar. the oncologist believes the best course of action right now would be to give her a stronger dose of gemzar. he said he is basing that on the length of time it took for a recurrence to appear. it was a little over a year. he feels a stronger dose could keep it on hold longer. my sister also spoke to someone who felt a combination of xeloda and gemzar may be effective. we dont have much infor on the 5fu/oxi chemo. i would really like some advice. on monday we are contacting sloane to let them look at her reports and give advice. also was wondering if anyone has ever heard of a drug called naltrexone. i was reading about it and it suppossedly has become an effective cancer fighter but i always question the legitimacy of drugs i havent even heard of before. thank you to everyone for your support, prayers and advice. we really appreciate it.
