Xeloda/Tykerb Help

Faith in Him · 04-09-2009, 09:54 AM

Hi ladies,

I have only had one treatment of xeloda/tykerb so far. This week I am on tykerb only but I have been running to the bathroom frequently. The doctor believes it is the Xeloda not the tykerb doing this. He does not want me to start Xeloda again until this is under control. This combo seems to be working. After only one treatment my skin rash is signifigantly lighter. I do not want to delay treatment.

The over the counter meds like immodium do not seem to make much difference. Has anyone tried the immodium tablets? Are they more effective?

Tonya

Rendi69CA · 04-09-2009, 11:11 AM

I will start this treatment today. Have your doctor give you diphenoxylate/atropine tablets. You take it when you finish going to the bathroom.

hutchibk · 04-09-2009, 06:22 PM

I am not a doctor, but I am a patient who has been on Tykerb for 2 years. I disagree with your doc that it is the Xeloda. I would surmise that it is a combo of the two or soley the Tykerb. I say that because I started Xeloda first for 3 weeks with no diarrhea at all. When I added in the Tykerb, that's when I had the initial problems, immediately. I am now on Tykerb/Herceptin and I never had diarrhea on Herceptin alone, but I did when I added Tykerb in. With Xeloda, I was on 5 Tykerb per day. With Herceptin, I am on 4 Tykerb per day. If it is a problem that does not correct within a month or so with good diet, then it is not unusual for your doctor to lower your dose by one or perhaps two pills. Many here have had to do that and have not lost efficacy by reducing dose a little.

In my experience, it took me about a month for my guts to settle down after I started the Ty/Xel combination. I have to eat very very clean and healthy. It really makes a huge difference. During that first month I ate the BRAT diet for breakfast everyday. (Banana, rice, applesauce, toast). And, my doctor told me to take 2 immodium tablets immediately when the diarrhea started, and then to take one after each subsequent episode, until it stopped. I worried about taking too much immodium in a 24 hour period, but I did let myself take a total of 6 in a day when necessary. It did work well for me. After about a month, my bowels settled down. But, it always comes back if I break down and eat unhealthy. I can't eat anything fried or any junk food (potato chips, candy, cokes/sodas). The cleaner and healthier I eat, the more regular I am. I only indulge in fast food maybe once every couple of months if I am in a hurry. Otherwise I eat very healthy... fresh, clean, no processed foods from boxes (except pasta), whole grains, non-fat organic dairy, very little meat/poultry, very sporatic alcohol. That's what works for me.

PetuniaJan · 04-10-2009, 08:25 AM

Is tykerb the same as lapatnib? I am trying to learn, day 3 for me on Lapatinib.

Thanks
Have a great day!
Happy Easter
Love Jan

hutchibk · 04-10-2009, 11:39 AM

Yes, Tykerb is the brand name for lapatinib.

Faith in Him · 04-10-2009, 03:09 PM

Rendi, thanks for the info. I will ask my onc about it. Hope you do well on this combo.

Hutchibk, I agree with you. I think it is the tykerb. I am going to try the immodium tablets just as you suggested. Now, if I can have the willpower to work on my diet. I guess the cherry coke, chicken burger and fries I had for lunch will not help my plight.

Jan, I hope the tykerb does the trick for you.

adrien · 04-11-2009, 04:56 AM

Hi,
I was on 5 Tykerb a day for 16 months and never had diarreah. Now I'm on 6 Xeloda a day (no Tykerb) and still have no problem. I think Hutch is right, that diet is crucial. I stay off all dairy products, no alcohol or coffee and no processed foods. Look after yourself—it's worth it.

CourtneyL · 04-13-2009, 08:56 PM

Yes, I second Brenda's message - Imodium tablets are amazing and diet is crucial. I have only had occasional diarrhea since starting Tykerb in January. One Imodium tablet usually does the trick. I also occasionally take probiotics which I think really help too. I use the Natren Healthy Start system - available at GNC.

adrien · 04-14-2009, 07:16 PM

Hello,
I notice little is discussed re integrated therapies, just the medical side. I have kept back much of what I do re nutritional, herbal, supplements and things like acupuncture. I embrace them all and if you only look at them in terms of managing the side effects of the drug regimes they have been totally successful.

In particular, slippery elm is a great benefit for the entire digestive system. Does anybody else work this way?

Darlene Denise · 04-14-2009, 07:44 PM

Okay, had to post my two cent worth too. I had raging grade 4 diarrhea lasting 90+ hours two weeks into Xeloda requiring trip to ER and IV fluids/potassium for a week and potassium pills for two weeks longer. I am now on a reduced dosage and things are much better.

If Immodium doesn't help ask onc for Lomotil. All I could eat was bread/toast, eggs and bananas. I now take lactobacillus and have been able to broaden my choice of foods to almost normal and no GI issues. I use the coated little capsules that Walgreens sells. Very tiny and don't need refrigeration.

May the force be with you on this crappy issue!!

Darlene

SoCalGal · 04-15-2009, 08:36 AM

Gotta weigh in - I really think that the key is to start TYKERB gradually.

Start with three pills for 4 days, then take four pills for 4 or 5 days and then five pills. Take the xeloda as directed, make sure to have a full tummy FOR XELODA.

EMPTY tummy for TYKERB!!

I think if you do this, then you have a better chance of being able to get through without having to stop after a few days. Along with posted advise to use Imodium and to clean up your diet. I eat a gluten and dairy free diet and take multiple vitamins and supplements along with weekly acupuncture. No wonder I'm exhausted!

adrien · 04-15-2009, 04:04 PM

Find it fascinating the number of women who take Tykerb on an empty stomach. We are all so different. I took 5 last thing at night so as to sleep off the nausea and be fine throughout the day. Obviously it's worth experimenting to find the time that suits you.