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I thought I'd pass on what I've figured out about managing diarrhea, and ask others for their "best practices."

Since starting on Herceptin and Perjeta I've had diarrhea or at least cramps/gas pains just about every day. Immodium always helps, but if I overshoot, then I can have constipation. I've hit upon a few strategies that seem to help:

Probiotics. I started taking one formulated for people over 50. It has three kinds of bifidobacterium and four kinds of lactobacillus. I also eat yogurt just about every day. I make my own Greek yogurt.
Fiber. I know some folks think fiber exacerbates intestinal distress, but for me it helps a great deal. I eat whole grains, fruits, and vegetables every day. I'm considering adding some psyllium husk too.
Water. I'm not a big water drinker, but diarrhea can make you dehydrated, so I try to be mindful.
Taking Immodium defensively. As soon as I notice my stomach hurting or my intestines gurgling I take one pill (Loperamide HCL, 2 mg.) Most of the time, that stops it before it starts.

What about you? What helps?

__________________
Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb

08-30-2014, 08:27 AM	#1
Mtngrl Senior Member Join Date: May 2011 Location: Denver, CO Posts: 1,427	Managing Diarrhea I thought I'd pass on what I've figured out about managing diarrhea, and ask others for their "best practices." Since starting on Herceptin and Perjeta I've had diarrhea or at least cramps/gas pains just about every day. Immodium always helps, but if I overshoot, then I can have constipation. I've hit upon a few strategies that seem to help: Probiotics. I started taking one formulated for people over 50. It has three kinds of bifidobacterium and four kinds of lactobacillus. I also eat yogurt just about every day. I make my own Greek yogurt. Fiber. I know some folks think fiber exacerbates intestinal distress, but for me it helps a great deal. I eat whole grains, fruits, and vegetables every day. I'm considering adding some psyllium husk too. Water. I'm not a big water drinker, but diarrhea can make you dehydrated, so I try to be mindful. Taking Immodium defensively. As soon as I notice my stomach hurting or my intestines gurgling I take one pill (Loperamide HCL, 2 mg.) Most of the time, that stops it before it starts. What about you? What helps? __________________ Amy _____________________________ 4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++ 4/29/11 CT scan shows suspicious lesions on liver and lungs 5/17/11 liver biopsy 5/24/11 liver met confirmed--Stage IV at diagnosis 5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX) 7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy 8/29/11 CT scan shows no new lesions & old lesions shrinking 9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex 10/17/11--Brain MRI--No Brain mets 12/5/11 PET scan--Almost NED 5/15/12 PET scan shows progression-breast/chest/spine (one vertebra) 5/22/12 Stop taking Arimidex; stay on Herceptin 6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo) 9/24/12 CT scan--No new mets. Everything stable. 3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger. 4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed. 4/30/13 Begin Kadcyla/TDM-1 8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla. 11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive. 11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion. 2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1. 2/28/14 Begin Herceptin/Perjeta every 3 weeks. 6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better. 8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid. 9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks. 12/11/14 PET Scan--no new lesions, and everything looks better than it did. 3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid. 4/13/15 Increasing Xeloda dose to 10 days on, one week off. 7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13. 10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved. 12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16. 1/27/16 PET scan shows cancer is stable. 5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans. 6/3/16 Begin Kadcyla and Tykerb combination 6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia. 7/15/16 Begin Kadcyla only every 3 weeks. 9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia. 10/3/16 Last of 12 radiation treatments to right lung. 11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone. 11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse. 11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off. 3/6/17 Scan shows progression in lungs. Bone met a little better. 3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment. 5/31/17 Port placement 6/1/17 Start Navelbine & Tykerb