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Old 08-13-2011, 12:20 AM   #1
DeenaH
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Anyone suddenly have major diarrhea on tykerb?

After months with no problems? I started taking tykerb with herceptin in early January. I had the occasional loose stool, but sometimes would even get constipated. I was tolerating it really well for 5 months. Then I had a lung wedge resection on a Friday, and major diarrhea set in on Monday night. It has been constant diarrhea. Everything goes right through me. I have been tested for Cdiff twice (neg), had a colonoscopy with biopsies that were normal. Tried taking vancacin just in case the Cdiff test was false neg. No dice, it did nothing. I have tried immodium and limotil with no success. I was trying to get to my next pet/CT before making any treatment changes, and the scan is tuesday. I started navelbine 1 1/2 weeks after the diarrhea started, so it isn't that. After so long, I have landed in the hospital with dehydration, very low potassium and magnesium, 1.4 white cells (getting neupogen shots for that), and 8.2 red cells (getting 2 units of blood for that). They will also be trying to figure out the cause of the diarrhea. Anyone else had side effects from tykerb set it months after starting the drug?

Thanks for any info. I am really scared about dropping tykerb. Especially if it isn't the culprit.
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March 2010: Diagnosed with Stage IIIC IDC with axillary, mammary and suplaclavicular node involvement. ER/PR -, HER2+++. 7cm tumor in right breast.
April 2010: Started neoadjuvent chemo. 4 DD A/C every 2 weeks, 4 DD Taxotere every 3 weeks with Herceptin weekly.
August 2010: Finished chemo!
August 20, 2010: PET/CT showed no cancer in any nodes, and only a little uptake to the breast.
September 9, 2010: Bilateral mastectomy with immediate reconstruction with implants and Alloderm.
September 16, 2010: Pathology report showed 18/51 positive axillary nodes, 3.2cm tumor. Granual sized cancer found in the fatty tissue between levels 1 and 2.
October 19, 2010: CT showed several spots on lungs and 1 spot on liver. Liver spot is 2mm, lung spots range from 2mm to 4mm. We don't know if they are cancer or not.
12/15/10: Brain MRI clear
1/7/11: PET/CT
1/13/11: Recurrence in lungs. Start Tykerb
5/13/11: Progression in lungs
6/3/11: Lung surgery to get tumors for chemosensitivity testing.
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Old 09-01-2011, 11:18 AM   #2
Rich66
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Re: Anyone suddenly have major diarrhea on tykerb?

Seems like Florastor brand probiotic (over the counter at Walgreens, Walmart) has helped my mom's situation.
I suppose you've perused these..but there are a number of posts here:
http://her2support.org/vbulletin/showthread.php?t=40043
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Old 09-01-2011, 05:46 PM   #3
DeenaH
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Re: Anyone suddenly have major diarrhea on tykerb?

I haventried everything, and read all of the posts about tyker and diarrhea. What is strange about my case is that I was fine for 5 months on tyker, then I had lung surgery and the diarrhea started. Why all of a sudden?
__________________
March 2010: Diagnosed with Stage IIIC IDC with axillary, mammary and suplaclavicular node involvement. ER/PR -, HER2+++. 7cm tumor in right breast.
April 2010: Started neoadjuvent chemo. 4 DD A/C every 2 weeks, 4 DD Taxotere every 3 weeks with Herceptin weekly.
August 2010: Finished chemo!
August 20, 2010: PET/CT showed no cancer in any nodes, and only a little uptake to the breast.
September 9, 2010: Bilateral mastectomy with immediate reconstruction with implants and Alloderm.
September 16, 2010: Pathology report showed 18/51 positive axillary nodes, 3.2cm tumor. Granual sized cancer found in the fatty tissue between levels 1 and 2.
October 19, 2010: CT showed several spots on lungs and 1 spot on liver. Liver spot is 2mm, lung spots range from 2mm to 4mm. We don't know if they are cancer or not.
12/15/10: Brain MRI clear
1/7/11: PET/CT
1/13/11: Recurrence in lungs. Start Tykerb
5/13/11: Progression in lungs
6/3/11: Lung surgery to get tumors for chemosensitivity testing.
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Old 09-02-2011, 04:33 AM   #4
ElaineM
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Wink Re: Anyone suddenly have major diarrhea on tykerb?

If I were in your situation I might try changing my diet temporarily. I would reduce fat in the diet, and eat less of the whole grain foods and more white grains temporarily. I might try a diet similiar to what a person with the flu might eat and slowly add back the foods I took out of my diet one by one until I could eat normally without problems.
Even if Tykerb is the culprit one can learn to eat healthy without too much diarrhea. You can try to reduce the Tykerb dose temporarily for a few days and see if that makes a difference. You will still be getting some benefit from the Tykerb. You can add back a little Tykerb every few days until you reach the normal dose and see if that helps. Just make sure you tell your doctor what you are doing.
Rich is right about probiotics. They help straighten things out in the gastrointestinal system. If you can't get the medication he suggested eat more good quality yoghurt or other foods with the same healthy bacteria that yoghurt or the probiotic medication has.
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Old 09-02-2011, 03:26 PM   #5
Rich66
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Re: Anyone suddenly have major diarrhea on tykerb?

It's a long shot but...did you have blood given during or after the surgery? Seems there may be a small chance of that causing problems.
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Old 09-08-2011, 06:51 AM   #6
hezzy_9805
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Re: Anyone suddenly have major diarrhea on tykerb?

Im taking Tykerb and Xeloda and w/out my diphen/atrop (generic title) I'm a wreck living in the restroom. I think its the best control med stopping diarea
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Old 09-11-2011, 04:00 AM   #7
pibikay
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Re: Anyone suddenly have major diarrhea on tykerb?

Hema intially had diarrhea when she started tykerb/xeloda.After a few courses of immoodium she was fine.After a break of 5 months it was back with pain in the stomach.So back to immodium and Pan 40.It stopped a couple of days ago and we are keeping our fingers crossed
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huband of Hema
Metstatic Breast Cancer Stage 4
Left breast cauliflower 25x20cm
ossousmetstatis in vertbrae secondaries L4=L5secondary
nodules in both liver lobes secondary
Diagnosed 10th March 2010
ER/PR-ve
Her 2 neu +++
Taxotrne Zylotec started 16th March
Herceptin added 5th April.9th Herceptin over on 20th Sep '10.Started on Tykerb and Xeloda on 22nd Oct2010TYKERB 4 TAB A DAY XELODA 4 TAB A DAY ONE WEEK ON ONE WEEK OFFZoletrust infusion every 4 months.Lesion in Brain 3D CRT Radiation started on 1st Feb'12 for 20 days ,5 days a week for 4 weeks.Devloped a small lump in breast.Xeloda stopped from 11th April '12.On Taxol.After 3 cycles of Taxol Taxol stopped.Back to Xeloda regime from 3rd July
Herceptin started again on 27th Dec 2012.Xeloda stopped Navelbin added on 7th February 2013.Now on Tykerb Herceptin and Navelbin
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