Best time to take tykerb

[Sherryg683]

For those of you that are on it, what have you found is the best time to take the Tykerb to minimize side effects. I was thinking of taking it before bed. Didn't realize you had to take 5 pills. I have my supply sitting here but I'm sort of afraid to start taking the things...sherryg683

[hutchibk]

I haven't started yet, but my doc told me today that when it arrives and I start it, it is fine to take it at night before bed... don't know if that helps you at all, but I don't know anything about side effects yet. Just that the doc said it's OK to take at night.

[Esther]

When I first got the pills, I took them in the morning, then switched to night. I think the side effects are less when I take them at night.

[Sherryg683]

Tks..I bit the bullet and took the pills tonight. I figured by the time I knock myself out with my ambien, if I were to get nauseated..i'd sleep right through it..lol..sherry

[ron]

Hi...

my 69 year old mother switched from Herceptin to Tykerb 3 week ago. She did great on Herceptin. Now with Tykerb/Xeloda cocktail she has irritated eyes, diarrehea, little nausea, and is just plain ol' tired. She switched to bed time on her doctors advice which helps a little, but she is getting tired of being tired...

any other thoughts out there for dealing with that?

Ron

[Esther]

Ron:

Have your mom talk to her onc., I have heard of others being put on drugs such as Ritalin to combat fatigue and having it be succesful.

Her onc will have an idea of possible things to try, and if they would be appropriate for her at this time.

[Adriana Mangus]

Hi Sherry: Are you still receiving Herceptin? Good luck with Tykerb, am sure it will do wonders for you.

[Lala]

Sherry,

I take my dose at night. I found this the best time; less side effects and it is easier as you have to wait 2 hours after a meal.
Best of Luck to you.

[Lala]

Ron,
The Xeloda can cause side effects if the dose is too high. Perhaps the oncologist can lower her dose.
Fatigue is a side effect of all chemotherapy. The diarrhea is more of a concern, you need to watch out for dehydration.
There are several ways to combat the diarrhea, one is diet and the other is medication such as Lomotil which needs a prescription. Many take imodium, however lomotil is a little stronger. If diarrhea is more than a few times a day you should call the oncologist.
Best of luck to your Mother.

[Shell]

Sherry-

This time around, I am taking the tykerb at night before bed - I just started with it, so we'll see how it goes.

Regards,

[Margerie]

I want to wish you luck Sherry! Hope you don't have too many side effects. Let us know how you are doing.

[Sherryg683]

I have take it 3 times so far , at night and have no problems with it yet. I am still on herceptin...sherry

[bailey]

I will be starting the tykerb/xeloda combo early next week. I was told I will be taking 5 pills/day of tykerb at 250mg. each and with the xeloda I'll be taking 3 pills, 2 times/day at 500mg. each. I was told to take the tykerb in the a.m. with water an hour prior to food and the xeloda with food 3 in the a.m. and 3 with dinner - 14 days on with xeloda and 7 days off.
How does this sound to you ladies who are taking these 2 drugs and do you have any recommendations for me?
would appreciate all the info. I can get.
Thanks
B

[SoCalGal]

Hi Bailey,
I am on day 27 of the ty/xeloda deal. I was taking (5) tykerb in the AM then wait one hour, and eat breakfast then take 2 xeloda. Then after dinner anothr 2 xeloda. I think the recommendation from the trial is 2000 mg a day of xeloda (total 4 pills). For the past 3 nights, I tried tykerb right before bedtime, at like 11:00. I think it was waking me up with the runs, so today I'm switching back to the morning routine...infact, I just took them now.
Someone told me (pharmacy or Tykerb "cares") that you need to wait 2 hours after a meal but now I've read the fine print which states 1 hour prior or 1 hour following.

BTW I think Tykerb "cares" is an oxymoron. Today I am going to try and stay on a low dose of ativan and see if that doesn't help calm my side effects with the nausea.

Hope you have an easy day, Flori

[koolmom]

I'm right here with you guys. Start Xeloda 9 days ago. Just got my Tykerb today. I came on here to see if I was supposed to take the 5 pills at the same time. I assume I am. Still debating the night vs. morning dosage. I guess I will try it tonight. I'm glad I have found this support board. I feel like everyone has there arms around me...even though I have only posted once, just reading the posts, we are all in the same boat.....sometimes we feel like the boat is sinking, but we just start bailing harder. LOL.

[bailey]

I will be starting next Wed. There are a few different ways I've read to take all these meds - some swear by Tykerb at night but someone said they woke up a few times with the runs others take it in the morning. The xeloda is am and pm. With the tykerb you take the 5 pills all at once - that much I do know. How many xeloda are you taking a.m. and p.m. - I will be taking 3 a.m. and 3 p.m. - seems a bit high from what I've read so we'll see how it goes. Just thankful that there is a new drug out there like this and the side effects can be adjusted with your onc accordingly. I think I'll keep daily notes on how I feel at least for awhile to go over with the onc.
Otherwise we are all good to go and yes in it together. I too am thankful for these posts and someone to talk to about it.
How have you been on the xeloda so far?
B

[hutchibk]

I start Xeloda tomorrow morning and Tykerb on Friday or Monday, depending on when it arrives in the mail.

Lets see, here's what I learned today...

Xeloda I will take 3pills AM (1500 mg) and 4pills PM (2000 mg) = 3500mg(!) for 14 days and then 7 days off.

Tykerb needs to be taken on empty stomach, so I will take the 5pills either {1 hour before breakfast/Xeloda, or 2 hours after breakfast/Xeloda} or {2 hours after dinner/Xeloda, before bed}, every day.

I asked about when to take my B complex and the pharmacist at my clinic said wait 2 hours after each Xeloda... 50mg twice a day. (increasing to 100mg twice a day if needed).

I guess I will need to take my once a week Fosamax 1/2 hour before Tykerb one day every week...might be time to switch to Boniva so I can take it once a month on my Xeloda OFF week.

I have my Zofran and immodium ready if I need them and gingerale on ice.

Yikes, here we go! Like Taffy said last week, I am a bit apprehensive about what tomorrow might bring...

[koolmom]

Okay, took my first Tykerb last night around 11:30. I had supper late and wanted to be sure I waited two hours. I didn't really feel bad. I did have 3-4 episodes of diarrhea through the night, but it was nausea and diarrhea, just diarrhea.

The Xeloda seems to be going okay. I'm on 3 in the am and 3 in the pm. I see my oncologist next week and think I will be moved to 4 in the morning and 4 pm. I'm on day #10. My 4-6 days I had diarrhea, but it seems to have subsided, until I added the Tykerb. I have felt good on the Xeloda (last night I was very tired). I also took at Ativan with it - just incase. I was a little nervous about the side effects. I keep forgetting to take the B6 Vitamin. So - so far, so good. Keep me posted on your experiences! Thank you guys!

[bailey]

I'm curious to know what they think the B6 is suppose to do for you? Also, have any of you heard of any hair loss. When I received my pills yesterday and the Onc. mentioned it they state some hair loss although when I talked to the care division they said non was reported so I'm curious to know. Also, any reddening of the hands and feet yet?
B

[hutchibk]

the B6 or Bcomplex is supposed to help mitigate the chances of hand/foot syndrome... I am willing to give it a shot!

[koolmom]

Okay Xeloda/Tykerb users. I'm day 12 of my Xeloda and day 6 of the Tykerb. I have started experiencing terrible heart burn. Has anyone else had this? The pamphlet that came with the Xeloda said something about not taking antacids with the Xeloda. Does anyone know about that? I called the pharmacy and they said they understood that you could take antacids a couple of hours after taking Xeloda. I really think it is the Xeloda, but I am not sure. It burns from my stomach to the back of my throat. Is that TMI? LOL. Hope you other guys are doing good with the cocktail!

[hutchibk]

Did they say anything about Nexium or Protonix? I have taken Nexium for burn/acid reflux for the 3 years that I have been in and out of chemo... I'll try and remember to ask my doc next week.

So far I am tolerating the Xeloda really well! Waiting to start Tykerb in next few days.

[SoCalGal]

I also take an acid blocker from all the chemo. I take prevacid every morning.

BTW- I've been on a Tykerb hiatis since Friday (after 30 days on) and am now on round #2 of Xeloda, day 5. I am functioning again! My doc wants me to start back on the Tykerb on Tuesday - only 3 pills a day to start. I hope that is beneficial - I think he wants me to try weaning up to full dose.

I feel scared to be off the Tykerb but glad my symptoms calmed (chronic diarrhia & nausea - talk about too much information-haha) I have been eating again - all food was tasting so sour on the Tykerb. Okay, it's a beautiful day in southern California today - a perfect day to sit outside in the shade. Blessings, Flori

[koolmom]

Flori,

I really hope you can take the Tykerb this time. I haven't had much diarrhea or nausea (some) but for me, it is the heartburn. I slept in a recliner last night as to not lay completely flat. Thank you guys for posting. I will ask my oncologist next week about going back on Nexium.

Pam (Koolmom)

[koolmom]

Okay, something else weird is happening. Of course, I attribute everything to the meds. I look like a 37 year old teenager. My face has started breaking out all over my cheeks. Just in the past 2 days, but it is much worse today. Could this be from the Tykerb? If anybody else looks like a pimple face teenager, let me know. Thanks. Pam

[chrisy]

Hi Pam
I got some of those, too. Only on my nose and a couple on my cheeks. Definitely pimple-looking instead of rash-looking. Mine got worse for a couple of days, then has settled down some. Maybe the Tykerb is adding SO MANY years to our lives that we are regressing to our teen years! Let's hope so - but without some of the other teen angst!

[Lolly]

I'm on day 5 and started noticing more pimples than usual yesterday; I'm no teenager but do have Rosacea which causes pimple-like outbreaks so wasn't sure if the Tykerb was causing them or not but definitely by this am have more than my usual share. I'll try the topical medication my derm gave me for rosacea and see if it helps.

<3 Lolly

[bailey]

Ladies - do try the Jan Marini skin care line - the Cesta cream and Bioclear are amazing and highly recommended for rosacea as well. If you go onto the Jan Marini website they will hook you up with a rep. - the line is awesome and may help with the skin.
Hope you'll try it.
B

[hutchibk]

You want the rash, right? It means that you are very responsive to the Tykerb, right?

[SoCalGal]

Brenda,

That's just what I was thinking. I asked my onc if the rash was "favorable" and he said, "yes, we think so". So far mine isn't on my face, but I'm sure it will be there any minute.

I start back on the tykerb today - am starting at 3 pills and gradually going up to all 5. Will take the 1/4 ativan every 4 hours against nausea. Am seeing a nuitritional oncologist or something like that - A Dr Conklin, MD, PHd at UCLA tomorrow about supplements. I already am a health food junkie so it will be interesting to see what he says. Will ask about the ??clay instead of immodium. And about the B6's, B12's and magnesium. I'll post any helpful info.

Hope we all have a good day today. It's hard to have a life that doesn't center around treatment and side effects. I'm sick of thinking, worrying and discussing this all of the time...but it's always first on my mind.

[Andi]

The amount of B6 that they are using in the study in am in is 200mg/day in case any of you want to start taking it. I have been putting my cream on my palms of my hands and soles of my feet now for a week and taking my daily pill, of course one or both could be a placeabo, but so far I have not had any symptoms, however, I think it is still too early for the symptoms to show up.