Stomach Sounds-yikes :tykerb-herceptin combo

Ceesun · 03-05-2010, 12:37 PM

Hi Gals, Has anyone experienced this while on this combo. I know tykerb can cause this but lately I have had an increase in gurgling, churning, stomach distress. I know this sounds positively goofy ...started taking lactinex for this the past week. And, if something doesn't agree with me it just runs right through me....Ceesun

jml · 03-06-2010, 05:53 AM

Sounds like a classic case of the Tykerb Terrors to me!
I'm so sorry!

I found that if I took my Tykerb at night, on an empty stomach, before bed, I could typically predict a "morning bathroom rush". But then there would be unexpected episodes at random times too - definitely after eating dark, leafy greens, etc.

The rn's always recommend Immodium - but I thought it was the devil! Like pouring liquid cement directly into your colon - then being constipated for days after, which for me is even more miserable.

I kept GasX or Peppermint pills close by at all times to calm the rumblings & always new where the closest restroom was. And, as silly as I felt making the purchase, baby wipes & desitin.
I'm sure lots of other folks will offer ideas too.
Hope you find a solution that works for you~

Keep the Faith~

Jessica

VirginiaGirl · 03-06-2010, 06:48 AM

Ceesun,
I went to see a holistic nurse before starting the tykerb/xeloda and she has me taking a probiotic (which is good bacteria like in some yogurts only thousands more of them, can find it at a vitamin store) to help with the big D, and it does seem to help! I believe it may help with the gurgling gassy tummy, too. Also, she has me eating (or trying to) a baggie of fresh veggies (celery, broccoli, carrots, snap peas, etc) and a banana a day for fiber and bulk and vitamins, and I believe that helps, too. I have good luck with immodium, but would prefer to get more control more naturally if I can.

Jessica - I too have the "morning bathroom rush" from bedtime tykerb but usually it's done before I have to go to work, thank goodness! And, I've been keeping Desitin in the back of my mind in case I end up having to go there, too! Others on this site have recommended that, too, I just haven't tried it yet!

Good luck!

Barbara H. · 03-06-2010, 11:55 AM

I only take 4 tablets and haven't had much of a problem. I have had problems with gas, which can keep me up at night. I tried Beano, which works, and I haven't used it lately. I have only had the runs a few times, and didn't take anything for the situation. That happened when I ate a lot of salad and fruit. Now I eat everything. I do eat yogurt for lunch with probiotics.
I did have a rash when I started Tykerb, but it disappeared after about a month. I am not fatigued on Tykerb and Herceptin, and in reality, don't feel as if I am on any drugs. This May I will reach my 6 year mark with metastatic disease. When I was first diagnosed it was detected everywhere including the brain, except in the bones. Heceptin alone cleared everything else, but it was detected a year and a half later in the bones. Fortunately, my markers are currently normal, and whatever is in the bones is not measurable. Injury, even former breaks to bones always show up on a bone or CT scan, so I assume that I am currently NED.
Best wishes,
Barbara H.

StephN · 03-06-2010, 02:58 PM

Hi Ladies -
I do not take Tykerb, but get occasional stomach rumblings from other various and unknown reasons.

While making my supplements run recently I decided to ask at that store for something that would work when I was having the problem.

They recommended and I got "RAPID RELIEF" Digestive Support for gas and bloating. Gaia Herbs makes it. Just one capsule and my trouble was over! It contains fennel and other natural substances plus vegetable charcoal.

The label on the back of the bottle says "may interfere with absorbtion of drugs" and to check with doctors before taking. But I don't see how this could be worse than the other things that are recommended.

Anyway - wanted you to know this has worked immediate wonders for me.

hutchibk · 03-06-2010, 03:24 PM

OK, let's see if I can help...

I have been on Tykerb/Herceptin for a year and a half. I take 4 pills (1250mg of Tykerb) every night. When I first started this regimen, I took 5 pills, but it caused bad digestive distress and gurgling/bloating that was horrible, so we dropped to 4 and all was immediately much much better.

I learned a fantastic solution from my doc for the "poo-terookis"... instead of taking Immodium pills after the fact to try and control what has already happened, I keep the Immodium liquid on hand. For a couple of months, I drank 1/2 to full capful every morning. It controls the tummy and sets the tone for the rest of the day, every day... and I had no more "uh-oh everyone get out of my way" moments. It is very controlling and soothing. The last couple of months have been very normal and I haven't needed the Immodium... but I have been taking Jarrow EPS Acidophilous everyday, and I think that really does the trick now.

All that said, I have to eat a very clean diet to keep things stable. Fried and processed and spicy and junky foods set my stomach in a downward spiral. Clean and fresh and mild and home-prepared/home-cooked foods are what my stomach loves.

Also, I read the Tykerb packaging again recently and as with many meds, you are supposed to stay away from all things grapefruit and get this... on Tykerb they tell you NOT to eat potato skins. So I don't, even though I used to love them.

Hope this helps...

Rich66 · 03-06-2010, 05:09 PM

Quercetin and Capsaicin (surprisingly) are said to have stomach/Big D calming qualities. There's a more in-depth exploration of the poophylaxis issue on the Tykerb/Herceptin channel.

VirginiaGirl · 03-14-2010, 05:35 AM

For the first time the other night I experienced the gurgling churning stomach at bedtime. The only difference I could relate it to was not having waited a full hour after eating before taking the tykerb (wanted to go to bed!). Last night I took my 3 tykerb shortly after eating (more than 30 min after) instead of the xeloda (oops, need better lighting!), so I just went ahead and took the xeloda at the same time rather than missing a dose. I figured I'd pay for this somehow, but was curious to see what would happen, and...nothing! I didn't notice any difference. I don't plan to make this a habit of course!