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Old 04-27-2007, 07:03 PM   #1
Sherryg683
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Best time to take tykerb

For those of you that are on it, what have you found is the best time to take the Tykerb to minimize side effects. I was thinking of taking it before bed. Didn't realize you had to take 5 pills. I have my supply sitting here but I'm sort of afraid to start taking the things...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
8 years NED now
Scans every year

Life is not about avoiding the thunderstorms, it's about learning to dance in the rain!
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Old 04-27-2007, 07:27 PM   #2
hutchibk
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I haven't started yet, but my doc told me today that when it arrives and I start it, it is fine to take it at night before bed... don't know if that helps you at all, but I don't know anything about side effects yet. Just that the doc said it's OK to take at night.
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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 04-27-2007, 08:08 PM   #3
Esther
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When I first got the pills, I took them in the morning, then switched to night. I think the side effects are less when I take them at night.
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Old 04-27-2007, 08:59 PM   #4
Sherryg683
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Tks..I bit the bullet and took the pills tonight. I figured by the time I knock myself out with my ambien, if I were to get nauseated..i'd sleep right through it..lol..sherry
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Sherry

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
8 years NED now
Scans every year

Life is not about avoiding the thunderstorms, it's about learning to dance in the rain!
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Old 04-28-2007, 08:24 PM   #5
ron
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Mom's tired.

Hi...

my 69 year old mother switched from Herceptin to Tykerb 3 week ago. She did great on Herceptin. Now with Tykerb/Xeloda cocktail she has irritated eyes, diarrehea, little nausea, and is just plain ol' tired. She switched to bed time on her doctors advice which helps a little, but she is getting tired of being tired...

any other thoughts out there for dealing with that?

Ron
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Old 04-28-2007, 09:50 PM   #6
Esther
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Ron:

Have your mom talk to her onc., I have heard of others being put on drugs such as Ritalin to combat fatigue and having it be succesful.

Her onc will have an idea of possible things to try, and if they would be appropriate for her at this time.
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Old 04-29-2007, 03:04 PM   #7
Adriana Mangus
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Treatment

Hi Sherry: Are you still receiving Herceptin? Good luck with Tykerb, am sure it will do wonders for you.
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1994 - rt brst, .lump, underarm node dissection,chemo+rad 1.2 cms, Grade 3.
28 nodes neg
Er,Pr, Positive HER2 status unknown
2003- Recur to rt lung.July 16 ( B-Day!)
Her2+++ Er,Pr, Negative
2003 - Aug04--Navelbine + Herceptin
2004- 2007--
NED - Herceptin, only
2007 Feb-April Xeloda added to hereceptin
2007-May Back on Navelbine+Herceptin
2008-Feb-Mar 15 Ses Rad to Rt. Lung
2008- Oc 17 Add Tykerb to Herceptin
2009- June-- Discont Tykerb
2009 July 7--Current Taxol + Herceptin
2009 Dec--Discontinued treatment due to progression. Looking into cyberknife.
2010-Aug Accepted to TDM1, no SE, except liver count went up.
2010-2011 September got kicked out of the trial, due to a small spot found on lung.
2011- 2012 September thru early 2013 on Herceptin
2013- March Bone density shows small spot on 5th rib.
2013 - April 4th appt with onc. will post after discussing course of treatment.
2013-March-April Cyber knife to brain and radiation to rib. Chest --base line before chemo-CT-Scan stable for lung issue. CA2729 Normal.
2013 April Herceptin- TDMI
2013 Sept Herceptin + Perjeta . CA2729 within normal range. Brain and Pet scans October 31st. will post results.
2013 October Brain MRI- mixed response. Will see Onc/rad on Halloween.
2013 October/November Brain-MRI nothing new. Repeat MRI next year in May.

2013 December Continue Herceptin and Perjeta. Stable at the moment.
2014 February Brain MRI -clear!
2014 January Added Taxotere to Perjeta+Herceptin.
2014 March Stopped chemo-chest ct-scan next.

2014- March Scans shows tumor's larger, CA2729 higher. Discontinue Herceptin.
2014 April Perjeta+ Halaven
2014 April CA2729 went down 60 points after one cycle. Cough does not want to go away.
2014 June Continue on Perjeta + Halaven-- no more cough. Stable
2014 June Back on Herceptin + abraxane
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Old 04-29-2007, 08:58 PM   #8
Lala
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Sherry,

I take my dose at night. I found this the best time; less side effects and it is easier as you have to wait 2 hours after a meal.
Best of Luck to you.
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DX Fall05 Stage 4 er+ pr+ her2+ liver and bone mets
DX Fall06 Brain mets, Brain mets gone Spring 2007
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Old 04-29-2007, 09:20 PM   #9
Lala
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Ron,
The Xeloda can cause side effects if the dose is too high. Perhaps the oncologist can lower her dose.
Fatigue is a side effect of all chemotherapy. The diarrhea is more of a concern, you need to watch out for dehydration.
There are several ways to combat the diarrhea, one is diet and the other is medication such as Lomotil which needs a prescription. Many take imodium, however lomotil is a little stronger. If diarrhea is more than a few times a day you should call the oncologist.
Best of luck to your Mother.
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DX Fall05 Stage 4 er+ pr+ her2+ liver and bone mets
DX Fall06 Brain mets, Brain mets gone Spring 2007
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Old 04-30-2007, 07:09 AM   #10
Shell
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Sherry-

This time around, I am taking the tykerb at night before bed - I just started with it, so we'll see how it goes.

Regards,
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init diag 3/17/03-stage IIIC
ER-/PR-/HER2+++
CET x4 neo-adjuvant
lump & SNB 8/03
CET x2
radiation and herceptin/navelbine 11-03-1/04
1st reoccur to lymph nodes 8/04
complete axillary dissection 12/04
herceptin/taxotere til progression (lungs) 3/05
xeloda w/out lapatinib trial 6/05
lapatinib/tykerb added 4/06
ended trial 8/06 due to progression
doxil / avastin 11/06-12/06 - wasn't working
navelbine/herceptin/avastin 12/06/3/07 - progression
gemzar/carboplatin/tykerb 4/07
mri shows extensive mets to bone in pelvic area 6/07
switched to abraxane (3 on/1 off) + tykerb 6/07
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Old 04-30-2007, 08:50 AM   #11
Margerie
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I want to wish you luck Sherry! Hope you don't have too many side effects. Let us know how you are doing.
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Are we there yet?


Dx 10/05 IDC, multi-focal, triple +, 5 nodes+
MRM, 4 DD A/C, 12 weekly taxol + herceptin
rads concurrent with taxol/herceptin
finished herceptin 01/08
ooph, Arimidex, bilateral DIEP reconstruction
NED
Univ. of WA, Seattle vaccine trial '07
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