HER2 Support Group Forums

HER2 Support Group Forums (https://her2support.org/vbulletin/index.php)
-   Herceptin / Tykerb (https://her2support.org/vbulletin/forumdisplay.php?f=44)
-   -   Something that seems to work for diarrhea (https://her2support.org/vbulletin/showthread.php?t=40043)

hutchibk 06-18-2009 08:23 AM

Something that seems to work for diarrhea
 
Being on Tykerb/Herceptin comes with the extra-exciting and totally unpredictable experience of IBS like symptoms (I don't have IBS, but my symptoms seem very IBS like)... for one week or month everything can seem perfectly normal and then suddenly without warning I will get a day (or 5) that amount to oops, hello, ummmm, where's the nearest bathroom, and I mean NOW?

I want to share with my sisters and brothers two things I have learned recently that seem to REALLY help keep things REALLY normal (and hopefully consistenly normal with no surprises), at least for me. (check with your doctor first, but this is what my gastro doc has asked me to try - with fantastic results, I must say...)

1. as I posted recently somewhere, it seems for me at least, that chewing gum increases and helps instigate IBS like symptoms. I only started chewing gum occasionally in the last 6 months, and I can tie a number of IBS attacks to the times that I have put a new pack of DoubleMint in the car and chewed through it... usually in about a week's time. I then learned from a friend with real IBS that chewing gum is a no-no for her. So, I have stopped the gum and it seems to have helped many of those symptoms stop as well.

2. My Gastro doc has offered a solution as well. He wants me to be able to tolerate my Tykerb/Herceptin regimen with as little side effect as possible so he works with me to come up with solutions. This one he asked me to try a few months ago, but I put it off because I was having a "good month" and thought everything was normalizing on its own accord... until it wasn't. So, I have been doing what the doc ordered and the result in just a few days time has been extraordinary in my opinion...

Citrucel. Dietary fiber (which I always thought was for constipation and was counterintuitive to what I was experiencing... but I was wrong - it is a normalizer for symptoms that span the range from constipation to diarrhea). Simple, straight forward, successful. I bought the pills instead of the powder. I take two a day and WOW.

So my friends, just wanted to share some poop (pun intended) with you on a great solution should anyone be looking for a great solution...

It really has me whistling dixie these days!

Rich66 06-18-2009 08:48 AM

Generous of ya to share the poop. I owe you. If no citrucell is at your command, white rice has been know to slow the flow. Worked for me after a trip to Paris gave me an undesired souvenir.

hutchibk 06-18-2009 08:57 AM

I have been eating the BRAT (Banana, rice, applesauce, toast) diet regularly to help with symptoms since starting Tykerb over 2 years ago. It really does help, but the Citrucel is something that my Gastro wanted me to try on a daily basis to help normalize things so that I wouldn't have to invest in an Immodium factory - and I have to say... it seems to be a fantastic solution so far! That and a good, fresh, mostly organic, no junk/fast food, clean, healthy diet without gum, and I think I am good to go... literally and figuratively.

SoCalGal 06-18-2009 11:03 PM

Thanks for the info. I am also struggling with the poop disorder. I think, for me, it's the two years of tykerb. I am also trying some new things to help. I ordered my supplements and will let you know what works.

Flori

hutchibk 06-19-2009 11:29 AM

2 citrucel a day - makes the Tykerb pooterookis go away... at least for me, for now.

DianneS 08-18-2009 03:55 PM

Re: Something that seems to work for diarrhea
 
hutchibk,

THANK you!!! for the info on the Citrucel. Good grief I was thinking of buying stock in the company that makes Immodium. As you said, there are days when I'm ok, today is one of the for some unknown reason, where I don't need an Immodium. But some days I don't want to leave the house unless I know precisly where the next toilet will be. It was putting a damper on my life to say the least! Thanks for the scooper poop,
Diannes

hutchibk 08-18-2009 10:29 PM

Re: Something that seems to work for diarrhea
 
It has continued to help alot, but is not perfect. I don't think anything will be perfect... I still lean on immodium, but not as often as I was. It just takes whatever it takes. I hope it helps you a little too!

Sandra in GA 08-21-2009 12:35 PM

Re: Something that seems to work for diarrhea
 
I have been on Herceptin/Tykerb for 9 months now and began having a history of some IBS symptons. When I tried adding fiber to my diet, it made my diarrhea worse. I did find that if I left off the whole grains and raw fruits and veggies along with all dairy products, my symptoms got better. I "googled" diarrhea diet and found a low fiber diet and basicially I follow that until my symptoms go away. I have had a couple of three week periods diarrhea free! Of course, I have to go back to my fresh fruits and veggies and before you know it, I am back to low fiber. Hope this helps for you.

Sandra

Laurel 08-21-2009 02:29 PM

Re: Something that seems to work for diarrhea
 
A naturopathic suggested probiotic supplements which have worked wonders for my G.I. tract.

hutchibk 08-26-2009 12:56 AM

Re: Something that seems to work for diarrhea
 
yes, probiotics are also very helpful. My gastro likes them and also recommends Activia yogurt. I like organic yogurt myself, but am planning to try Activia as well.

Jackie07 11-04-2009 01:07 AM

Re: Something that seems to work for diarrhea
 
It's been almost two years since I had my last Herceptin treatment. My digestive tract started having some problems since at least January this year. I thought it was caused by eating some very old beef jerky. My family doctor gave me some kind of medicine to control 'irritable bowel'. I took it for two days, didn't like it and quit (especially after reading the description of the drug - something that messes with my Central Nervous System.)

Finally I saw a specialist yesterday. Dr. Erickson is the head of the GI Department at the hospital/clinic. He said that because of the many antibiotics I had taken (the latest one was in early September, according to the record he pulled out of the computer) the 'good' bacteria in the GI tract had been destroyed. Solution? Yogurt - to replenish the bacteria. Two weeks should fix it, he said.

He also said to take Citrucel to increase the 'bulk' (the sweet potato and other veggies were not 'enough', according to him.)

I'm so glad the solution is so simple and easy. Most importantly, he had reassured me about my recent scans. "They looked good," he said. The strangest thing is: I believed him! I've been having problems believing my family doctor and my oncologist. But this doctor who I'd just met had given me such confidence that I trusted him.

He had read my chart/medical record before he stepped into the room. The first thing he uttered from his mouth was: "I've read your chart. You have been through a lot!" After he checked my abdominal area and listened to my heart/lung, he declared: "everything looks good."
What a wonderful experience!

Rich66 01-23-2010 11:35 AM

Re: Something that seems to work for diarrhea
 
In Dr. Block's Life over cancer book, quercetin at 250-500mg/day is discussed as a poophylactic. Has anticancer properties too. In other research, Capsaicin (surprise) seems to actually help digestive matters.

Rich66 02-10-2010 02:52 PM

Re: Something that seems to work for diarrhea
 
Any progress/further success on the poophylactics?

Westcoastgirl 02-14-2010 03:52 PM

Re: Something that seems to work for diarrhea
 
Would like to add that often we have problems with osteoporosis on this site, thus we take our calcium supplements. Often what we read tells us we should take calcium with magnesium in a 2:1 ratio. In talking to dietitians and friends I find we often overdo the supplements, not trusting our diets are good enough to provide us with the calcium we need. If you are taking a lot of calcium in conjunction with magnesium you may end up with diarrhea caused by too much magnesium. I am as guilty as the next person and found when I cut back on my supplements of calcium/mag my year of diarrhea was ended....just a thought.

VirginiaGirl 02-22-2010 03:24 PM

Re: Something that seems to work for diarrhea
 
I went to see a holistic nurse, and she put me on probiotics - like what you find in yogurt only tons more of the good bacteria. I got it at a vitamin shop. In reading about probiotics, it's good for diarrhea and the immune system. I just started taking it a week ago, and I've not had any problems with the big D since then.

Rich66 02-22-2010 03:35 PM

Re: Something that seems to work for diarrhea
 
Liz,
Please post the brand, ingredients and amount.

VirginiaGirl 02-22-2010 06:52 PM

Re: Something that seems to work for diarrhea
 
Probiotics are considered a supplement. The brand I got is by American Health and is called Acidophilus, and it has 3 strains of good bacteria. My nurse told me to just follow the instructions on the bottle, which is a couple tablespoons with every meal (3x/day), but work up to it. So far I haven't taken it but once or twice a day. It has a strong plain yogurt flavor, at least the strawberry does, there are other flavors. There are also other probiotics, some are in a capsule, and some have more strains of bacteria. This brand specifically states on the label: no grapefruit, and since I'm on tykerb for some reason they stress not having any grapefruit or extract, that makes me feel better. Anyway, just google probiotics and tons will come up. I'm curious to know if anyone else out there takes them?

Unregistered 05-08-2010 06:04 PM

Re: Something that seems to work for diarrhea
 
How much Xeloda and Tykerb is everyone on? I take 2000 mg of Xeloda in the morning, 2000 mg of Xeloda at night and 1500 mg of Tykerb at night. We tried 2500 mg and 2000 mg of Tykerb but both landed me in the hospital with severe diarrhea, dehydration and my kidneys began to go into failure. So the diarrhea is nothing to mess with, do seek help right away.

I just began reading on this website and want to thank you for the advise about citrucel, I am going to ask my onc about it.

Unregistered 05-15-2010 12:06 PM

Re: Something that seems to work for diarrhea
 
Hi to all who are working through the gastro issues with Tykerb. I had a horrible time getting on it. I had to add one a week for over a month, and now am up to 4 for a month, dreading to go to 5 but probably will. I found that my doc and the staff had NO IDEA about how to treat my really bad diarrhea and stomach upset. I ended up losing close to 25 pound over the last 3 months just because I couldn't eat anything. I did figure out a regime that helped a lot.

First thing in the morning and 2 or 3 times a day I take 2 oz of Aloe Vera juice before I eat. (George's is the best brand as it doesn't feel slimy at all - like water.) The aloe really helps coat your stomach. I also was on Carafate (sp?) as well, it seemed to help my lower GI tract, (it is perscription) and now I am off that.

I take a zantac in the am before my first meal.

When I started, I just automatically took an imodium a day, then I went down to 1/2 and now I am down to as needed, which is great.

The dairy issue is a big one for me - I can't even tolerate youghurt at this point, but I have been able to introduce goat cheese and have done better with that than regular cheeses. I am hoping to start a goat kefir so I can get probiotics better. Regular probiotic supplements from the healthfood store help too.

The biggest thing though is cutting out SALT. The addition of any salt to food creates a terrible problem - it just acts as an osmolytic and pulls the water into my bowels. If I avoid salt in my meals, I am able to go for days without an incident. I even went out to dinner and asked them to hold the salt, and I was good the whole evening. It was great.

Best luck for everyone - and if you find something that works, please post it.

Thanks, Alison

Rich66 05-18-2010 09:32 PM

Re: Something that seems to work for diarrhea
 
So...
Citrucel, probiotics, Aloe Vera, Zantac, Quercetin(maybe), low sodium, careful calcium/moderated magnesium..and the big I.

Any updates?

Pushpa 05-23-2010 05:57 AM

Re: Something that seems to work for diarrhea
 
My Mom is in tykerb(2 tabs morning+2tabs night) for a week now, she has frequent diarrhea. my question is whether diarrhea will subside as her body gets used to the drug or is it a never ending process??
tykerb is preferred than herceptin because its fat soluble drug and crosses the blood brain barrier whereas herceptin doesnt. but my mom thinks otherwise as her quality of life is affected due to tykerb.

hutchibk 05-24-2010 12:13 AM

Re: Something that seems to work for diarrhea
 
OK, so when I was getting radiation to my rt rear ilium back in October, the beams were also hitting my intestine a bit... it caused the dreaded pooterookis that I had so effectively been able to manage. So, I asked my rads onc what he suggested and what he told me was a true miracle and lifesaver. However, it is not the holistic cure that we all hope will help us.

Ok, his remedy is this. Buy liquid Immodium instead of pills. Drink 1/2 (which is all I needed) to 1 cupful (the little marked dosing cup that comes on top of the bottle) each morning "to set the tone" and keep ahead of the diarrhea. After about 2 days, I was again in control. It got me regular, with normal daily output and no more "uh oh, where are those restroom signs when you need them" moments....without getting stopped up.

I stayed on that plan for about 3 months and then tapered myself off... he told me that as long as it wasn't stopping me up that I could stay on it for an indefinite time if needed. It may not be for everyone, and it may not work for everyone, but I was sure relieved once I tried it.

Unregistered 06-22-2010 07:32 PM

Re: Something that seems to work for diarrhea
 
My mother will be starting Xeloda/Tykerb soon since she hasn't been responding to Abraxane/Herceptin very well.

Thank you for the great information on this website. God bless you all and good luck. You are all truly brave souls.

feonad 03-06-2011 08:45 AM

Re: Something that seems to work for diarrhea
 
Aloe Vera can cause diarrhea. Google it. I guess everyone's different though. I know this since I was thinking of taking it.

KristinSchwick 07-11-2011 10:30 AM

Re: Something that seems to work for diarrhea
 
So I'm all confused about the dosing of Tykerb and Xeloda, my doc started me on what he called a heafty/aggressive dose- 1250 mg Tykerb and 2000mg Xeloda in the am and 1500 mg of Xeloda in the pm. But I've been suffering with side effects so we're trying to decrease the dose to a less symptomatic dose.
Anyway, I think and correct me if I'm wrong, but the actual mg/person depends on the body mass of the individual. So I may not need as much mg as a person, who weighs say, 200 lbs. Am I right?

Mtngrl 07-10-2012 03:23 PM

Re: Something that seems to work for diarrhea
 
I've just started my fifth week on Tykerb.

I do think yogurt helps. I make my own, which means I know it's fresh and lively. I have some every day.

On "bad" days I just eat brown rice, banana, and applesauce, and maybe some cooked carrots. I drink herb tea with ginger or mint (or both). I haven't cut back on fiber.

I seem to be getting used to it. There's been less diarrhea, and less abdominal pain. It's better when I'm home and can have my yogurt. It's a bit tougher when traveling.

Jackie07 07-16-2012 07:44 AM

Re: Something that seems to work for diarrhea
 
Bump it up...

NEDenise 08-16-2012 05:56 AM

Re: Something that seems to work for diarrhea
 
Bump it up, indeed!
I start Tykerb today...and before I do...I feel a health food store run looming on my horizon!

Thanks for all the great advice! Though I could stand to lose about 25 pounds right now (thank you, Decadron)...I'd like to exercise it off...not "shed" it painfully or worse...explosively!

Thanks again, friends!
Can't imagine this journey without you all!
Denise

Sandra in GA 08-23-2012 07:09 AM

Re: Something that seems to work for diarrhea
 
I "googled" diarrhea diet and found a low fiber diet that I basicially followed ~ white bread, no fresh fruit or salads, only green beans and asparagus, etc. It really helped.

The amazing thing is when you finish the Tykerb, within two days you can go back to your healty diet of fiber and frest veggies and fruits!!!

When I began the trial with the Tykerb, I was told that the women who had dropped out had because of the diarrhea. I decided the benefits out weighted the problems and I decided to do whatever it took to continue and finish the Tykerb. I feel this drug is probably why I am NED four years out from stage III with 21 of 21 positive nodes.

Mtngrl 08-23-2012 07:55 AM

Re: Something that seems to work for diarrhea
 
@Sandra--good point about the tradeoff. I think that makes sense.

However, I'll be taking it unless and until I have progression, which could be years. (I hope so!) I frankly cannot face an indeterminate future on white bread with no fresh fruits or vegetables.

I am having less diarrhea. My research nurse asked me to log when I get it, and how much Immodium I take for it. It only happens every three or four days, and one dose of Immodium usually takes care of it. That's not too bad.

I seem to do better on days that I get a LOT of fiber, like when I make popcorn. I'm trying to keep my cholesterol down (in case the cancer doesn't get me first), and fiber is an important part of my cholesterol control plan.

Actually, I think yogurt is my secret weapon. I posted about making yogurt under the diet and nutrition thread. Homemade yogurt is cheaper, and it's much fresher, than store bought. It has lots more of the friendly bacteria that help maintain gut health. That's my theory anyway.

Sandra in GA 08-23-2012 09:33 AM

Re: Something that seems to work for diarrhea
 
Amy,
I think you are right about the yogurt. It did help. I agree, a life without fresh fruits and veggies would be horrible. I will confess I would indulge occasionally, but I always paid the price. My onc did prescribe Lomotil and advised me to take one of those along with the Immodium (one each at the same time) and the "cocktail" did work better than each alone.

Good luck to you. I suspect eventually your body will adjust and you will have less and less symptoms.
Sandra

Mtngrl 08-24-2012 09:30 AM

Re: Something that seems to work for diarrhea
 
I'm having much less abdominal pain, and everything is working more normally, so there may be something to the "getting used to it" idea.

I had a lot of mouth sores & bleeding gums at first, and that's better now too.


All times are GMT -7. The time now is 06:20 PM.

Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2024, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007 - 2021