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Old 06-03-2007, 07:54 PM   #1
michele u
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Tykerb --- diarrhea!

I know diarrhea is a side effect of the Tykerb, but already after one dose!! Does it get better girls? or do i have to live with it? I'm going to try taking it in the am so the diarrhea isn't at bedtime, but then again working might be interesting!
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dx: August 2003 stage 3b 35 pos nodes ER/PR neg Her+
4 AC 12 weekly taxol
one year Herceptin in trial
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Old 06-03-2007, 10:01 PM   #2
chrisy
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Hi Michele,
I only have had very slight problems with diahhrea - and it did seem like it was more of a problem when I first started. it also seems that it was related to how long it was after I took the tykerb before I ate anything - that is, how long my stomach was empty except for the tykerb. That's just my experience, I haven't really heard anyone else saying that.
Good luck, Michele
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June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
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Old 06-03-2007, 11:21 PM   #3
VaMoonRise
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Hi Michele,

When I was on Tykerb I had a terrible time with diarrhea the entire time that I was on it which was for 15 months. I lived on Immodium, I would take Immodium every morning as soon as I woke up before I took the Tykerb. Tykerb is to be taken 2 hours before or 2 hours after a meal. The Immodium helped me a great deal and without it I would have been living in the bathroom the entire time I was on Tykerb.

Everyone is different though and hopefully this wont be a problem for you the entire time. Be sure to let your onc know. My onc was fine with me taking Immodium everyday and there are prescription drugs you can take if the Immodium doesn't work for you. You can also try the BRAT diet for a while and see if that helps.

Wishing you all the best,
Nicola
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Old 06-04-2007, 04:55 AM   #4
IRENE FROM TAMPA
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Smile yep it happens Michele

unfortunately this is one of the side effects. I started last August on this combo, and I still do experience diarhhea (?) but Immodium can control. When I first started, within the first two weeks I had terrible gastritist like symtoms. I have been able to manage better (either that or I am getting used to it. ) I go in spurts where its better then I get to where I can't even drink something that I have to go to the bathroom.

It will I am sure level out some and the Immodium will help. I need to start taking it again myself.

Good luck, other then that it is a pretty easy drug to take.
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1996 - INFILT DUCTAL CAR.W/ LYMPH NODE INVOLVEMENT. ADRIA/CYTOXIN/5FU
1999 - RECURR. TO AUXILA AND 2 TUMORS IN LIVER
TREAT: STEM CELL REPLACEMENT/HERCEPTIN.
2002 - RECUR TO LIVER
TREAT: NAVELBINE, THEN GEMZAR, THEN XELODA.
2004 - TUMORS STILL IN LIVER
TREAT: RFA TO LIVER
STABLE UNTIL
2004 - TUMOR PROGRESSION IN LIVER.
TREAT: RESECT HALF OF LIVER.
2005 - RECURR TO LYMPH NODE OUTSIDE OF LIVER.
TREAT: TAXOL/CARPO/HERCEPTIN. FAILED ON
THIS TRIO. STARTED ON ABRAXANE.
2006 - PROGRESS WITH 2ND TUMOR GROWTH.
TREAT: AUG. BEGAN ON TYKERB/XELODA
TRIAL. CONSIDERED STABLE TO DATE.
2007 - TAKEN OFF OF TYKERB/XELODA TRIAL DUE TO
PROGRESS STARTING TYKERB/AVASTIN.
NOV 2007 - SCANS SHOW PROGRESS TUMOR GROWTH
IN ABDOM. AND TWO NEW TUMORS IN NECK AREA.
BEGAN HERCEPTIN/AVASTIN/TAXOTERE
Feb 08 - Ixempra/Xeloda
June 08 - Her/DM1 trial

"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY."
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Old 06-04-2007, 04:03 PM   #5
Sherryg683
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That is the reason I took myself off Tykerb after a week of usage. I had such terrible diahrea that I felt totally weak. It started after the first dose and food would just go through me. Nothing seemed to help, immodium or anything. Then came all the little white pimples. I decided to get off it and keep it for later if my cancer came back. I just didn't feel like putting my body through that unless it was necessary. It wasn't an easy drug for me but if I need it later, I guess I could wear a diaper..lol..sherryg683
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Diagnosed: December , 2005 at age 44
13+ positive lymph nodes
Stage IV , Her2+, 2 small mets to lungsChemo Started: Jan, 2006
4 months Taxotere, Xeloda, Hercepin
NED since April 2006!!
36 Rads to follow with weekly Herceptin indefinately
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Old 06-04-2007, 05:06 PM   #6
Carolyns
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Hi Michele,

I must be lucky. I set my alarm for one hour prior to waking up and rise take my pills and then go back to sleep for one hour. Then I rise and get ready ...must make to trips to the john. Then coffee (less that half a cup) and breakfast, toast with olive oil and fish oil. That's it for me no other worries...so far at about 20 days on Tykerb.

I will say that I notice a little more trouble if I eat fatty foods like ribs or pork. I tend to eat mostly veggies, rice, salads and fruit.

Good luck, I hope it gets better for you!
Carolyn
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Old 06-04-2007, 05:07 PM   #7
Carolyns
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Michele, I forgot...important to drink lots of water! Carolyns
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Old 06-04-2007, 06:31 PM   #8
Joannie
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I have had diarrhea on and off again with Tykerb. It will be bad for a couple of days then it goes away. I do have the pimples that was mentioned earlier. I wondered if that was a side effect. I feel like a teenager!
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Old 06-04-2007, 09:51 PM   #9
hutchibk
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In 3.5 weeks on Tykerb, I have only had 3 bouts of diarrhea, and they were all in the first 8 days. Since then, I have paid very, very close attention to what I eat. I start most mornings with the BRATT diet, (banana, (brown)rice, applesauce, toast and tea) - I believe that really helps me alot through the rest of the day. Ditto to what Carolyn said, anything junky or fried or too much meat makes my stomach really tender and poopy. As that is not how I typically eat anyway, it is not hard for me to avoid those foods. I eat mostly fresh and healthy and whole grain. I do notice that my intestinal fortitude is a little more compromised during the 2 weeks that I take Tykerb and Xeloda together than the week that I take Tykerb alone....

And DRINK, drink, drink your water!!!
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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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