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Old 10-19-2010, 02:57 PM   #1
hezzy_9805
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controlling Tykerb

I started Tykerb less than a year ago. I had severe diarrhea for months and couldn't find any control. I was trying the BRAT (bread,rice,apples,toast). After some time I found out about diphen/atrop (lomotil) to control freq.bathroom breaks.
Im taking 5 Tykerbs 500mg. If I take diphen/atrop the first five minutes Im awake, and the first five min. after taking Tykerb I have NO side effects, tummy ache, freq.bathroom visits with diarrhea .... nothing!!!!

Just hoping this helps someone else too.
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Old 10-19-2010, 07:02 PM   #2
Laurel
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Re: controlling Tykerb

Wow! I have long appreciated the effectiveness of Lomotil.
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Old 10-24-2010, 11:59 PM   #3
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Re: controlling Tykerb

My started on Tykerb and Xeloda on the 22nd.23rd morning was terrible for her. The Onc suggested cutting Xeloda for a day and if needed to take 1 Tan of Immodim a anti diorreal.Ysterday she started Xeloda againand this morning the frequency incresed and she has taken an immodium.
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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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Old 10-25-2010, 12:07 AM   #4
pibikay
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Re: controlling Tykerb

BTW hezzy PBK again. Is lomotil an anti diafrreal?
All the best
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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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Old 10-25-2010, 05:22 PM   #5
Sandra in GA
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Re: controlling Tykerb

Yes it is an antidiarrheal. Here in US it is by prescription only. I found that taking one Lomotil along with 2 Immodium at the very first sign of any problem worked. The suggested dose of Immodium is two after the first stool and one after each succeeding one up to (I think) 4 or 6 a day. I hope this helps your wife.

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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
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Old 01-21-2011, 12:00 AM   #6
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Question Re: controlling Tykerb

I began Tykerb 7 days ago. terrible diarrhea began within 2 days. I have found nothing that controls it. I also began Endocort ( intestinal sterorid) and Lialda in Aug 2010 for lymphacytic colitis. I am back again going up to 20x per day to bathroom. If one is not within 5 feet of where I stand, I am in big trouble.

Im going to speak to Dr about either changing Tykerb dosage. or removing from from treatment plan..dont know where to go at this point in time.

Stage 3B ER/PR + Her-2+
5/10 Lymph nodes +
Right Masect 1/05
ACT 2/05- 6/05
RADS 6/05 - 8/05
Tamoxifin 8/05- 6/2010
RECURRANCE 11/2010 Plueral Effusion ( 4 liters)
BONE METS
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Old 01-21-2011, 12:10 AM   #7
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Re: controlling Tykerb

I started Tykerb/Xeloda Dec 2007 and developed severe diarrhoea and vomiting to the point of being hospitalised for dehydration on two occasions. I had to have breaks and the dose of both drugs was adjusted. I was thought to be particularly sensitive to that drug combination but I was on it for a year until some progression of my liver mets was noted at the beginning of 2010. I am now on Tykerb/Herceptin/Abraxane but I only take 750mg (3 tabs) rather than the 1250mg (5 tabs) recommended dose. Diarrhoea is a minor and not inconveniencing issue. Trish
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5/2004 (R) 30mm bre gr3 infiltrating ductal ca 16/18nodes er (2+) pr (3+) HER2 (3+)
6/2004
6 cycles(FEC), Oct 40 rads, Tamoxifen
5/2006
oopherectomy, Arimedex
12/2006
liver mets largest 9cm
1/2007
Herceptin,
3/2007
Taxol + Herc
1/2008
Herc alone
4/2008
Multiple bone mets,Zometa
7/2008
Herc + Gemcitabine
8/2008
Herc+Navelbine/vinoralbine
10/2008
Herc+Carboplatin+Taxol
12/2008
Tykerb+Xeloda
2/2010
Herceptin + trial drug
5/2010
Herceptin+Tykerb
8/2010
Tykerb+Abraxane
9/2010
Abraxane
12/2010
Abraxane+Tyk+Herc
4/2011
Tyk+Herc+Femara
6/2011
Liver and bone mets prog.Abraxane continue Herceptin,Tykerb,Femara and Zometa
8/2011
Probable liver progression and increased neuropathy. Xeloda with Tyk+Herc. Zometa 6 weekly.
9/2011
Liver progression,TM +++. Cyclophosphamide and Methotrexate metro Herc Zometa
10/2011 liver mets prog.Herc, 3 Tykerb +2mg decodron daily,Zometa
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Old 01-21-2011, 09:32 AM   #8
Nancy L
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Re: controlling Tykerb

I started Tykerb 2/2009. Dr. Slamon prescribed 1000mg of Tykerb plus Herceptin every three weeks. He told me 1000mg of Tykerb, not 1250mg, is the recommended dosage if you are also on Herceptin. If you are ONLY on Tykerb, the recommended dosage is 1250mg. After five days on 1000mg, I had a severe allergic reaction from Tykerb----hives all over my body. Dr. Slamon changed my dosage to 750mg (3 tablets) and that is what I have been on for two years and still NED.

I have diarrhea but it is controllable with diet and lomotil. I know that drugs definitely affect people differently and most physicians do not take the time to fine tune dosage for each patient. When a drug company does a study, they do not try to study different factors like weight, age, other medication interaction, etc. This is true for all drugs---not just cancer medication. My husband is extremely drug sensitive and gets every side effect listed on the information. Half of a standard dose of anything is all he needs to get the same result. I know it is scary to have a dosage adjustment for a cancer drug, but based on my experience you may want to consider this approach and talk to your oncologist.
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Old 01-22-2011, 02:33 AM   #9
Trish
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Re: controlling Tykerb

As I understand it the trials go for the maximum tolerated rather than the minimum effective dose, so hopefully your oncologist can adjust the dose for you. I didn't realise 1000mg was the recommended dose in comb with Herceptin as I have never been able to cope with that level, but still responded really well and had no progression for a year. Recently since adding the 750 mg daily Tykerb (I had severe diarrhoea and skin probs at the 1k mg dose) to my Herceptin and Abraxane my tumour markers have plummeted. Hope your treatment goes well.
Trish

Trish
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5/2004 (R) 30mm bre gr3 infiltrating ductal ca 16/18nodes er (2+) pr (3+) HER2 (3+)
6/2004
6 cycles(FEC), Oct 40 rads, Tamoxifen
5/2006
oopherectomy, Arimedex
12/2006
liver mets largest 9cm
1/2007
Herceptin,
3/2007
Taxol + Herc
1/2008
Herc alone
4/2008
Multiple bone mets,Zometa
7/2008
Herc + Gemcitabine
8/2008
Herc+Navelbine/vinoralbine
10/2008
Herc+Carboplatin+Taxol
12/2008
Tykerb+Xeloda
2/2010
Herceptin + trial drug
5/2010
Herceptin+Tykerb
8/2010
Tykerb+Abraxane
9/2010
Abraxane
12/2010
Abraxane+Tyk+Herc
4/2011
Tyk+Herc+Femara
6/2011
Liver and bone mets prog.Abraxane continue Herceptin,Tykerb,Femara and Zometa
8/2011
Probable liver progression and increased neuropathy. Xeloda with Tyk+Herc. Zometa 6 weekly.
9/2011
Liver progression,TM +++. Cyclophosphamide and Methotrexate metro Herc Zometa
10/2011 liver mets prog.Herc, 3 Tykerb +2mg decodron daily,Zometa
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