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Old 06-18-2009, 08:23 AM   #1
hutchibk
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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!
__________________
Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 06-18-2009, 08:48 AM   #2
Rich66
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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.
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Old 06-18-2009, 08:57 AM   #3
hutchibk
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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.
__________________
Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 06-18-2009, 11:03 PM   #4
SoCalGal
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Posts: 1,607
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
__________________
1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.

3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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Old 06-19-2009, 11:29 AM   #5
hutchibk
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Join Date: Oct 2005
Posts: 3,519
2 citrucel a day - makes the Tykerb pooterookis go away... at least for me, for now.
__________________
Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 08-18-2009, 03:55 PM   #6
DianneS
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Join Date: Aug 2008
Posts: 327
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
__________________
Three years and 5 months NED
Dx: Aug 2008 right breast IDC with 50% of tumor DCIS, Stage II or IIA, tumor size: 2.1 cm
Grade 3
8/9 Richardson/Bloom test
ER+ weakly positive
Alred Score: 4 (suggesting I would strongly benefit from hormone therapy)
PR-,
HER2 positive +++
No vascular invasion
No lymph nodes involved
Surgery: Sept. 9, 2008 -Modified radical mastectomy, right breast. I chose to have a simple mastectomy on the left. Began Taxotere/Carboplatin/Herceptin November, 2008. Finished T/C March 2009. Finished #16 Herceptin Sept. 09. AI's and Tamoxifen made me sick. Began natural Tamoxifen which is Quercetin, I3C and a combo of other supplements. I am also a DES Daughter. There is now a link between DES exposure in utero and breast cancer!
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Old 08-18-2009, 10:29 PM   #7
hutchibk
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Join Date: Oct 2005
Posts: 3,519
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!
__________________
Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 08-21-2009, 12:35 PM   #8
Sandra in GA
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Join Date: Aug 2009
Location: Moultrie, GA
Posts: 431
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
__________________
Diagnosed: 7/25/08 ~ age 63, no family history
Surgery: 8/14/08 Bilateral mastectomy; tumor left breast, node dissection; right prophylactic with expanders: 1/12/10 latisimuss dorsi flap on left side: 9/22/10 implants in
Pathology Report: ER/PR-; HER2+ (3+); Grade 3, StageIII; 3cm tumor plus 21/21 lymph nodes positive; 5cm DCIS
Chemo: A/C; Taxol/Herceptin/Tykerb; phase II study at Mayo adding Tykerb for early stage
Radiation: 25 rads
Vaccine: Walter Reed GP2/AE37 vaccine study ~ last booster 9/17/2012
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Old 08-21-2009, 02:29 PM   #9
Laurel
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Location: Hershey, PA. Live The Sweet Life!
Posts: 2,005
Re: Something that seems to work for diarrhea

A naturopathic suggested probiotic supplements which have worked wonders for my G.I. tract.
__________________

Smile On!
Laurel


Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

15 Years NED
I think I just might hang around awhile....

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Old 08-26-2009, 12:56 AM   #10
hutchibk
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Posts: 3,519
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.
__________________
Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
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Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
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Old 11-04-2009, 01:07 AM   #11
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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!
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Old 01-23-2010, 11:35 AM   #12
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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.
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Old 02-10-2010, 02:52 PM   #13
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Re: Something that seems to work for diarrhea

Any progress/further success on the poophylactics?
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Old 02-14-2010, 03:52 PM   #14
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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.
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Old 02-22-2010, 03:24 PM   #15
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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.
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Old 02-22-2010, 03:35 PM   #16
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Re: Something that seems to work for diarrhea

Liz,
Please post the brand, ingredients and amount.
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Old 02-22-2010, 06:52 PM   #17
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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?
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3/05 Initial dx invasive dc 2 cm lump, age 39
lumpectomy & 3 of 5 nodes +, ER+/PR+, Her2+++
alternative chemo 5/05-7/05, rad 8/05-10/05
7/06 dx mets to vertebrae, pelvis & chest lymph nodes
8/06 - 10/06 tamoxifen, herceptin, oophorectomy & zometa
11/06 PET/CT showed continued bone mets, new spot on liver
12/06 began taxotere/herceptin 1x/3 weeks,
2/07 - 2-08 NED!
3/08 progression, start taxol/herceptin weekly, monthly zometa
8/08 start ai & herceptin
12/08 - progression, start weekly navelbine/herceptin thru 6/09 & monthly zometa
7/09 - PET/CT showed improvement in spine, but 2-3 lymph nodes in chest became active
9/09 - 11/09 - weekly abraxane/herceptin
12/09 - PET/CT - chest lymph nodes resolved, progression in spine & pelvis
2/10 - 6/10 - start tykerb/xeloda, progession in spine & pelvis
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Old 05-08-2010, 06:04 PM   #18
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Wink 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.

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Old 05-15-2010, 12:06 PM   #19
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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
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Old 05-18-2010, 09:32 PM   #20
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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?
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