tykerb se

grandma2 · 12-19-2008, 01:45 AM

hi all, haven't been here in a while. was very ill with acute pancreatitis and in and out of hospital. still have some residual problems. it seems that the cause may have been either xeloda or tykerb or perhaps the combo. onc and gastro can't definitively say. actually roche pharma. is tracking me as they've had other rare reports of pancreatitis. but my question tonite as it is now 3:40 am and i'm sitting here at the computer, is when is the best time to take tykerb. i've been taking before bed but haven't been able to sleep even with ambien cr 12.5mg. been checking up and it seems one of the se's is insomnia. problem is with taking xeloda after meals and all my many other meds...when the heck do i take the tykerb so i can get some sleep. for those who take it you know that the instructions are at least an hour before or after a meal. i hate to take tykerb so soon after xeloda. my digestive system is not a happy one. any suggestions will be greatly appreciated. thanks, grandma2

yankeebikachic · 12-19-2008, 11:42 AM

I get up at 5:30, take my tykerb with some coffee, wait an hour, and eat breakfast with xeloda. My tummy is mildly upset, it gets much better as soon as I eat. I just keep myself occupied with exercise or my dogs until I can eat. I have had no problems sleeping with the meds.
Hope this helps. Beth

Georgia girl · 12-20-2008, 07:10 PM

I've been on tykerb for 18 months, and have had 3 episodes of pancreatitis in the past few months. Now I'm wondering if Tykerb is the cause.

grandma2 · 12-20-2008, 07:31 PM

what does your onc say about this. we tend to blame everything on xeloda because i've probably been sicker with that than tykerb. but as i said in my post, both my brand new gastro doc and onc have admitted that they can't say for sure if it's one or the other or the combo. why don't you call the glaxo-smithkline and ask them. that's what i did with roche last sept. because my onc said the se's were not from xeloda and i felt they were. and now with pancreatitis they are tracking me (as required by law to report additional se's after trials to fda). i do have a + abdominal node right up against my pancreas which they thought was the cause at first, however my many scans in hospital showed that that node had gotten smaller so that didn't make sense. i'm assuming you're not on xeloda too? keep me posted...this is a very serious se. take care, grandma2

grandma2 · 12-20-2008, 07:32 PM

one more thing...are you having problems sleeping also?

Georgia girl · 12-21-2008, 05:40 AM

I don't think my ono is aware of a connection, but I see him next week and will discuss it. I did have trouble sleeping, but am taking melatonin every night (5mg) and that seems to help.

SoCalGal · 12-22-2008, 06:18 PM

I take tykerb first thing in the morning with my coffee and have been taking it for about a year and a half. When I was on xeloda I would take tykerb in am - wait one hour - eat and then take xeloda.

Hope this helps.
Flori

turbo · 12-27-2008, 12:15 PM

I have been on Tykerb for 21 months and take an hour after breakfast so less nausea also late right at bedtime. Have never had any illness from it . My diet affects mild nausea...keep something in stomach frequently...very little sugar. Hope this helps!

grandma2 · 12-27-2008, 10:40 PM

thanks everyone. my biggest problem seems to be the pancreatitis. it's hard to eat since when i do i have alot of pain afterwards. turbo...are you taking tykerb twice a day? i've only heard of once daily dosing. i'm dropping weight like crazy...almost daily. being very overweight i should be glad and i am. it's just that the way i'm doing it isn't normal, i know that. i'm up to 28-29lbs. since middle of sept. the pain is worse when i lie down so not sleeping well. and darvocet isn't helping the way it was. i see onc on jan 7th. if xeloda and tykerb are working well i hate to stop but if that's what caused the pancreatitis what do i do? i'm torn about this. i know all about quality of life but i don't want to go thru all my options too quickly. there isn't anything else right now specifically for her2+++. i do worry alot, i guess it's hard not to when i'm in pain most of the time. georgia girl....have you seen your onc yet? what did he/she think about a connection to the drugs? i'm curious. take care everyone, grandma2

Georgia girl · 12-28-2008, 07:44 AM

I see my ono on Tuesday, so I'll let you know what he says about the Tykerb/pancreatitis connection. Hang in there.

Beth

12-28-2008, 10:43 AM

I actually take Tykerb twice a day for 5 days and 9 days off...it is a stage 1 trial...so no other meds with it. I have mild nausea after a few days but only right when I am digesting food and I follow a a fairly strict diet. I have not had trouble sleeping but have noticed I don't get tired as early and seem to go to bed later...maybe the Tykerb!

hutchibk · 12-29-2008, 12:49 PM

Just wondering out loud - but curious if one or the other (Xeloda or Tykerb) might not actually "cause" pancreatitis, but might encourage an existing or genetic predisposition that someone might have toward pancreatitis?

grandma2 · 12-29-2008, 01:17 PM

hi brenda...i'm no doctor so i don't know if there is such a thing. i do know that xeloda has had a few reported cases. my onc can't say for sure if that was the cause. my gastro thinks it's one or the other or the combo. waiting for onc to call back. really sick today...have a feeling she's going to tell me to stop. actually i didn't take xeloda last night or this morning...pain too bad. according to docs, pancreatitis can be caused by heavy drinking (i don't drink) or drugs (which i take alot of). i've had a strong sensitivity to xeloda from the very beginning...that's why she did the FU5-toxicity test. i don't know, just that i need some relief from the pain...it's getting to me.
wish me luck. grandma2

grandma2 · 12-29-2008, 05:19 PM

well talked to onc. off both xeloda and tykerb for now. xeloda probably for good. am on a liquid diet and if pain doesn't get better in a few days then back to hospital. very upset.

Georgia girl · 12-30-2008, 05:55 PM

My ono isn't aware of a connection between Tykerb and pancreatitis, but he doesn't have many patients on it. He said if heard of another case like mine, he definitely would believe there might be a connection.

grandma2 · 12-30-2008, 06:20 PM

thanks for asking. my onc (and i agree) think it's probably more the xeloda or possibly the combo. when i talked to the xeloda pharm company they said they had 1 possible reported case of pancreatitis and that's why they are now following me. i've had severe sensitivities to xeloda from the beginning. will find out next week what the game plan is. grandma2

miss di · 01-01-2009, 12:07 AM

Everybody is different and everybody processes meds different. Your pancreititis could be from either or both meds. Have you ever had an attack before?
I had terrible gallbladder attacks when I was taking Navelbine, on call doc said it was my liver, my regular Onc said alot of people have problems with gallbladder related to Navelbine. Had my gallbladder out, no more pain.
I believe this, if you start a new med, and have new symptoms you never had before, it could be the med.
Doctors know what MOST people report, so they say they don't think it is from the med when they don't hear alot of people reporting the same thing. That doesn't mean you are not the person that that one side affect is not going to happen to. We need to listen to our bodies, and listen to these sites because we get a bigger picture by reading what others have the same than what the doctors have. In other words, there are a lot more of us writing than one doctor sees. Make sense?

grandma2 · 01-01-2009, 07:49 AM

thank you...that is exactly what is happening. i never had these problems before i started these 2 drugs. i'm now concerned about liver damage...these drugs can cause that also and for past few days my urine is very dark. i'm also back on liquid diet. i think i may go back to hospital today. daughter is coming down. my hub needs custodial care so it's a real problem. she can only stay a few days. the last time i had a service which was so expensive and totally a nightmare. so i don't know what i'm going to do. at the beginning my onc kept saying these were not se's from drugs but i called roche pharma. and they said it was reported so that's why they're tracking. i can't imagine sitting in er on new years day for years, but i need relief from pain and probably iv fluids...i'm hoping that's why urine is dark and not liver.