Tykerb --- diarrhea!

[michele u]

I know diarrhea is a side effect of the Tykerb, but already after one dose!! Does it get better girls? or do i have to live with it? I'm going to try taking it in the am so the diarrhea isn't at bedtime, but then again working might be interesting!

[chrisy]

Hi Michele,
I only have had very slight problems with diahhrea - and it did seem like it was more of a problem when I first started. it also seems that it was related to how long it was after I took the tykerb before I ate anything - that is, how long my stomach was empty except for the tykerb. That's just my experience, I haven't really heard anyone else saying that.
Good luck, Michele

[VaMoonRise]

Hi Michele,

When I was on Tykerb I had a terrible time with diarrhea the entire time that I was on it which was for 15 months. I lived on Immodium, I would take Immodium every morning as soon as I woke up before I took the Tykerb. Tykerb is to be taken 2 hours before or 2 hours after a meal. The Immodium helped me a great deal and without it I would have been living in the bathroom the entire time I was on Tykerb.

Everyone is different though and hopefully this wont be a problem for you the entire time. Be sure to let your onc know. My onc was fine with me taking Immodium everyday and there are prescription drugs you can take if the Immodium doesn't work for you. You can also try the BRAT diet for a while and see if that helps.

Wishing you all the best,
Nicola

[IRENE FROM TAMPA]

unfortunately this is one of the side effects. I started last August on this combo, and I still do experience diarhhea (?) but Immodium can control. When I first started, within the first two weeks I had terrible gastritist like symtoms. I have been able to manage better (either that or I am getting used to it. ) I go in spurts where its better then I get to where I can't even drink something that I have to go to the bathroom.

It will I am sure level out some and the Immodium will help. I need to start taking it again myself.

Good luck, other then that it is a pretty easy drug to take.

[Sherryg683]

That is the reason I took myself off Tykerb after a week of usage. I had such terrible diahrea that I felt totally weak. It started after the first dose and food would just go through me. Nothing seemed to help, immodium or anything. Then came all the little white pimples. I decided to get off it and keep it for later if my cancer came back. I just didn't feel like putting my body through that unless it was necessary. It wasn't an easy drug for me but if I need it later, I guess I could wear a diaper..lol..sherryg683

[Carolyns]

Hi Michele,

I must be lucky. I set my alarm for one hour prior to waking up and rise take my pills and then go back to sleep for one hour. Then I rise and get ready ...must make to trips to the john. Then coffee (less that half a cup) and breakfast, toast with olive oil and fish oil. That's it for me no other worries...so far at about 20 days on Tykerb.

I will say that I notice a little more trouble if I eat fatty foods like ribs or pork. I tend to eat mostly veggies, rice, salads and fruit.

Good luck, I hope it gets better for you!
Carolyn

[Carolyns]

Michele, I forgot...important to drink lots of water! Carolyns

[Joannie]

I have had diarrhea on and off again with Tykerb. It will be bad for a couple of days then it goes away. I do have the pimples that was mentioned earlier. I wondered if that was a side effect. I feel like a teenager!

[hutchibk]

In 3.5 weeks on Tykerb, I have only had 3 bouts of diarrhea, and they were all in the first 8 days. Since then, I have paid very, very close attention to what I eat. I start most mornings with the BRATT diet, (banana, (brown)rice, applesauce, toast and tea) - I believe that really helps me alot through the rest of the day. Ditto to what Carolyn said, anything junky or fried or too much meat makes my stomach really tender and poopy. As that is not how I typically eat anyway, it is not hard for me to avoid those foods. I eat mostly fresh and healthy and whole grain. I do notice that my intestinal fortitude is a little more compromised during the 2 weeks that I take Tykerb and Xeloda together than the week that I take Tykerb alone....

And DRINK, drink, drink your water!!!

[julierene]

I got it under control with Imodium AD, then I got constipated, then hemroids! I had bleeding and it hurt SO bad! I jokingly told my father that I didn't have periods anymore, I just bled from my bum and that my poop hole was really sore! Sometimes I think humor is the only way to go. The gas pains were very painful too. But the good news for me is that it seems to be getting a little bit better, almost like my body is getting used to it.

[Susan2]

When I first started, the diarrhea was so bad, I became dehydrated. I had IV fludis for 2 days. I went off both drugs for a couple of weeks. This time around, my dr. lowered the Tykerb dosage (kept the already low-dose Xeloda) and I'm now doing fine. I average about 1 immodium every 3-5 days. But if I eat fried food, it's a problem. That's not a big deal since I eat very little of it anyway.

Best of luck,
Susan

[Shell]

Michele-

I take tykerb before bed, and usually experience diarhhea once in the morning, and then I take 2 immod ad and haven't had any further problems. But I am losing weight, which I don't want to do, so i'm goiing to watch out for that...

regards,

[lu ann]

I have been on narcotic pain killers that make me slightly to severily constipated. Whenever I was on a chemo that caused diarhea, it seemed to even out.

Are any of you having the same experience as I with pain meds/tykerb? I will be starting tykerb and xeloda soon.

Thanks, Lu Ann

[Rupali]

Hi Michele U,
I guess the diahrrea might be a temporary thing as your body starts getting use to TYkerb.
My case is pretty similar to your case and I am having a very tough ime to convince the doctors to give me tykerb as monotherapy on a preventive basis.
Can you give me some tips on how I can convince my docs. Also how did you go about convincing the insurance company for off label use.
Please help.
Regards,
Rupali

[michele u]

Rupali,

my onc. basically lets me do what i want!! He knows i research alot and I'm a nurse. I told him long ago that I will do anything and everything!! He did tell me NO to 2 years of Herceptin though. I'm glad he did. I think since Tykerb is oral and there are some trials starting now on early tykerb, he knows that someday Tykerb will be like Tamoxifen. My insurance company first denied it. Then he wrote a letter of necissity and then they paid it. What really helped me was the Tykerbcares program. You can find it on the internet. They helped and did most of the work. They are the ones that got me in touch with the Patient Acess Network Foundation that paid for my copay of 900 dollars a month

[Rupali]

Hi Michele,

Thanks for your reply. If I may ask is it possible that I can have a phone consult with your oncologist and maybe that way I could maybe be able to get my community oncologist to talk to him and she can then prepare a similar leter for my insurance company. I have CIGNA HMO. I know I am asking for too much but I am in a desperate situation to get this drug and somehow have the insurance pay for it.
If you dont mind then you can give me the name of your oncologist in a private message or send it in an email to my husband at saurabhkapoor27@hotmail.com
AS you are a nurse so you must be knowing your oncologist pretty well, is it possible thta I can have a secnd opinion from him and as my case is so similar to your case so maybe I can have him as my oncolgist for major treatment advices.

Thanks for you r help. I really appreciate it.
Regards,
Rupali