I'm a Diarrhea Diva!!
 

I'm having such a hard time with diarrhea and Tykerb i'm only taking it 5 days a week and letting my body rest over the weekend. I feel horrible doing that, but i'm stage 3 taking it for my own piece of mind, and i just can't eat anything while taking it. I've lost 5 pounds already. Tykerb takes my appetitie and my taste away. When i stop it for a day i have a regular stool. I had a bowl of cereal with milk one night and was up allll night with terrible stomach cramps and diarrhea. Will i get used to the Tykerb, or is this something that will not go away?

Michele - are you taking any supplements with folic acid? It can be found in multivitamins and B-complex... it can make the side effects worse, so don't take it! Also, no grapefruit! I find that eating as clean and healthy as possible really mitigates the diarrhea severity. Also, try a BRAT breakfast everyday... banana, rice, applesauce, toast and tea. It works for me. I only have about 1-2 bad diarrhea days every month so far, and usually when I get lazy dietarily...

Hi Michelle,
Are you getting any other side effects apart from diarreah. Do u take tykerb at bed time.
Regards,
Rupali

Hi Michelle,
Read some of the home remedies for diarreah.
http://www.otan.us/webfarm/emailproject/miscdiarr.htm

Did you try bentonite clay?

Regards,
Rupali

Hi Michelle,
I wanted to check back to see how you were doing with tykerb and managing the diarreah.
I still havent started Tykerb monotherapy as my LVEF came down to 45%, so I am still waiting for it to jump back.
Regards,
Rupali

Michelle - I have found that my daily diet plays a HUGE role in how my intestines react! Make sure you are eating clean and HEALTHY... not junk no fried no sodas - it makes all the difference in the world for me. Also, see my post of other meds to steer clear of while on Tykerb. Maybe one of those will apply to you. And, remember, no grapefruit and I just learned that they tell you to stay away from <MILK products if you are having Tykerb diarrhea.> I didn't know that until I read it last week in some of the literature...

No Milk??
 

Hey Brenda where did you read about not having milk while on Tykerb.

I was only told not to eat grapefruit (which I love ) but nothing was said about anything else. Not that I drink that much milk but now am wondering.

I will ask my onc. to see what they say but if you can tell me where you read I can refer this to them.

Thanks Brenda - hope you are doing well. Have you gone for your scans yet

I read it in the bowels (no pun intended) of the Tykerb booklet that came in my little purple Tykerb purse... And I had read all of that info before, but somehow missed the sentence about milk. It is actually in reference to how the lactose affects severity of diarrhea, not that it causes a reaction to the Tykerb (sorry to mislead). It is on page 13 under "Diarrhea" and it says:

If you have diarrhea, try making changes to the way you eat. It may help if you:
*Drink PLENTY of water
*At least 8-10 glasses a day of sports drinks/electrolytes, broth or other clear liquids to replace lost fluids and minerals
*Eat low-fat, high protein foods (lean meat and eggs, instead of fried, fatty, spicy)
*Try the BRAT diet (Bananas, rice, applesauce, toast) for absorption
*Avoid milk and milk products, including ice cream
*Eat cooked veggies more than raw ones, remove skins from fruit before eating
*Avoid herbal supplements as some may cause diarrhea

Now that I re-read it, it makes total sense... to avoid milk products while you have diarrhea.

Michele
Try taking Imodium daily this does help. Some have to take it on a regular basis in order to tolerate the drug. Also the Tykerb dose may need to be lowered to 1000mg instead of the 1250mg. Eating a Bulk diet white rice, white pastas, white breads can be extremly helpful.

I will play devil's advocate here, but as I have learned, actually brown rice, whole grain pastas, and whole grain breads work equally as well, and they are alot healthier!

Try Bentonite clay as an absorptive agent in place of immodium every day. It is wiser to change diet than to keep an unhealthy diet and become dependant on immodium. It is pretty bad to stop the system the way immodium does... it's a good idea to find ways to stay as regular as possible while on these meds.

In general I have to agree a healthy diet is important.
I have been on Tykerb since March and I ended up in the hospital having to seek care because of the diarrhea. I learned there are different grades of the diarrhea side effects with Tykerb. Diarrhea can be very dangerous as I found out; it can lower your eltrolytes and potassium levels can be affected. This is why drinking something like Pedialyte or another oral eltrolyte maintenance solution is also important. You need to replace the balance in your body. I would add if you have several bouts of diarrhea a day or every few hours its time to stop. You need to restore the balance in your body prior to restarting the drug usually at a lower dose.

In my case I can not have too much fiber or it will cause me to have diarrhea. So I stick to the diet plan that was given to me by MD Anderson. I am able to purchase organic white pastas and breads in addition to all of my foods. I still eat a well balanced diet but I must include the starches in order to prevent the diarrhea from reappearing.

As we are all different consult with your doctor as to the best plan for you. Taking Tykerb should not be so difficult if you have the right diet it is very tolerable.

You are correct about using the organic white flours and rice. They are not processed or bleached as aggressively as the conventional products are - which essentially removes all nutrients. That is a much better alternative to the conventional white flour and rice, and does not have nearly the degree of fiber that the whole grain does.