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Old 06-14-2010, 12:06 AM   #1
Rich66
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Tykerb: Time of day

Morning seems easier regarding inherent fasting. But are there reasons to take at other times.
Any thoughts on timing of Tykerb/Femara?
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Old 06-14-2010, 12:50 PM   #2
Nancy L
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Re: Tykerb: Time of day

Rich,

I take mine just before going to sleep. That way I can deal with the diarrhea side effect first thing in the morning before I am out and about. I have been doing this now for 15 months. But I am taking 750mg. This doesn't mean that I haven't had periods of time when the side effects of Tykerb have been with me all day. I carry a bottle of Lomotil in my purse and that takes care of it most of the time.

Good luck to your mom---hope it works well for her.
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Old 06-14-2010, 04:42 PM   #3
Pam P
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Re: Tykerb: Time of day

I always take it the first thing right away in the morning. That works well for me with no ill effects.
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6/01 IBC er+ her2+stage IIIb; mastecomy
7/01 AC, taxol; radiation
2/02 tamoxifen
9/02 stage IV bone mets femara
1/03 taxotere/herceptin/aredia
6/03 herceptin, aredia & faslodex
1/04 navelbine, herceptin, aredia
2/05 herceptin/aredia
7/05 xeloda/herceptin/aredia
3/07 xeloda/tykerb/aredia
5/08 taxol/avastin/aredia
2/09 gemzar/herceptin/zometa
7/09 Taxol/Carbo/Herceptin, zometa
10/09 navelbine/herceptin & zometa
2/10 herceptin & tykerb & zometa
4/10 add xeloda &aromasin
10/10 dx with dermatomyiositis triggered by cancer
11/10 restart herceptin, tykerb, zometa
12/10 surgery-place rod in R femur to stabilize bone
1/11 radiation to R femur - 20 tx
2/11 2nd surgery - rod in Left femur
2/11 tx eribulen -- suspended dx brain mets
3/11 brain mets wbr 20 tx
4/11 halaven; discontine 8/11 not working
8/11 radiation to left femur 20 tx'
8-9/11 rad to lower spine
9/11 abraxane/herceptin/zometa
9/12 xeloda/herceptin/zometa
12/12 ablation of liver
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Old 06-14-2010, 04:51 PM   #4
Sandra in GA
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Re: Tykerb: Time of day

I seemed to do better taking it first thing in the AM before breakfast. If I waited until an hour after breakfast, I had more gastric activity. These were the two choices I was given by the doctors down at Mayo.
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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
Vaccine: Walter Reed GP2/AE37 vaccine study ~ last booster 9/17/2012
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Old 06-14-2010, 07:48 PM   #5
vlcarr
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Re: Tykerb: Time of day

During the clinical trial they advised me to take it in the AM. Not sure why but I took mine at 9:00 am each day. I very rarely had the diarrhea but I think that was luck on my part!
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Age 47, TN, Diagnosed 05/09
Her2+, ER/PR-, Stage III, 2 tumors = 1 8cm tumor
Grade 3
Sentinel Node Biopsy-speck present in 1 node
Completed 3 month clinical trial of weekly Herceptin and 1000mg Tykerb daily
Tumor no longer present
Right mastectomy and lymph node removal 09/25/09
No cancer present at time of surgery, none in lymph nodes
Start TCH 10/15, every 3 weeks for 4 months followed by radiation
Finished chemo 01/28/10-YEAH!
Herceptin every 3 wks until end of June
Radiation begins 03/01, 6 1/2 weeks
Radiation complete--Yeah!!
Developed lymphedema after radiation
In hospital for 4 days with pneumonia:(
Herceptin done! 06/24/10
Port Removed 07/08/10
Still in PT for lymphedema and mobility issues
DIEP Reconstruction 05/11
I can be changed by what happens to me, but I refuse to be reduced by it~~Maya Angelou
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Old 06-14-2010, 11:48 PM   #6
Kavy
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Re: Tykerb: Time of day

I took Tykerb first thing in the morning on an empty stomach, and waited one hour before having breakfast. It worked well for me.
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Old 06-22-2010, 01:13 PM   #7
my2boys
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Re: Tykerb: Time of day

I just started taking Tykerb on Saturday and I take it in the evenings about 1 hour after dinner.

I seem to be waking up each morning to diarrhea for about an hour or so. The first night was the worst.
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Old 06-28-2010, 12:12 AM   #8
Rich66
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Re: Tykerb: Time of day

Thanks folks.
Went with morning...over a week in and zero side effects so far (insert web symbol for crossed fingers). Labs to be taken tomorrow.
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Old 06-28-2010, 12:08 PM   #9
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Re: Tykerb: Time of day

Being that I am not much of a morning person... and I tend to be hungry right when I wake up, waiting an hour to eat was an issue for me. At night, I pretty much don't eat within about 3-4 hours of going to sleep... so I take it at bedtime and have no probs whatsoever.

After 3 years on Tykerb (1/2 of that w/Xeloda, 1/2 w/Herceptin), I now suffer absolutely NO probs w/diarrhea as a medication side effect. My guts have taught me what they are willing to tolerate and my lectures about CLEAN clean clean eating are the order of the day! I can't eat ANYTHING remotely junky or fried (except about 5 french fries) or I do have problems. But cleaner and more simple, low gluten/simple carb, low sugars, no high fructose corn syrup, no trans fats, no boxed foods, lots of organics (dairy, meats and produce), tons of raw/cooked/juiced fruits and veggies, no drive-thru fast food...

I can have the occasional fun meal, but I also go for it knowing I could have a small consequence.
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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."

Last edited by hutchibk; 06-28-2010 at 12:10 PM..
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Old 06-29-2010, 08:09 AM   #10
my2boys
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Re: Tykerb: Time of day

My body seems to be adjusting to the Tykerb. It took about a week, although everything is much better now. Still taking it at night before bedtime.
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Old 01-16-2011, 12:18 PM   #11
DeenaH
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Re: Tykerb: Time of day

I am starting Tykerb tonight. I plan to try it at night before bed first and see how that goes. I am also hungry first thing when I wake up, so nighttime is better for me. If I have any problems, I will switch to mornings before breakfast.

I do have a question though. For those of you who take it at night, can you get that hour or so of problems out of the way earlier if you get up earlier? Or does it hit a certain number of hours after you take the drug? I am not sure what triggers it. If it's just your body waking up and getting upright, I think that will work ok for me. I have to get kids up and out for school in the morning, so I'll need to set my alarm to get up earlier each morning. Hmmm...now that I think about it, maybe that won't work as well! I guess I'll have to figure it out as I go along.
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March 2010: Diagnosed with Stage IIIC IDC with axillary, mammary and suplaclavicular node involvement. ER/PR -, HER2+++. 7cm tumor in right breast.
April 2010: Started neoadjuvent chemo. 4 DD A/C every 2 weeks, 4 DD Taxotere every 3 weeks with Herceptin weekly.
August 2010: Finished chemo!
August 20, 2010: PET/CT showed no cancer in any nodes, and only a little uptake to the breast.
September 9, 2010: Bilateral mastectomy with immediate reconstruction with implants and Alloderm.
September 16, 2010: Pathology report showed 18/51 positive axillary nodes, 3.2cm tumor. Granual sized cancer found in the fatty tissue between levels 1 and 2.
October 19, 2010: CT showed several spots on lungs and 1 spot on liver. Liver spot is 2mm, lung spots range from 2mm to 4mm. We don't know if they are cancer or not.
12/15/10: Brain MRI clear
1/7/11: PET/CT
1/13/11: Recurrence in lungs. Start Tykerb
5/13/11: Progression in lungs
6/3/11: Lung surgery to get tumors for chemosensitivity testing.
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Old 01-17-2011, 04:54 AM   #12
pibikay
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Re: Tykerb: Time of day

Hema's Onc has prescribed Tykerb to be taken twice daily after food
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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 01-25-2011, 01:20 PM   #13
hezzy
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Re: Tykerb: Time of day

I take it about seven o'clock before bed. Im taking diphen/atrop to control the diaria. The first five min. that I'm awake I take a diphen/atrop than the first five min. after taking Tykerb I take another. I have complete balance without freq.bathroom breaks.
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-July 07 - DX w/ICD stage 3a, est+, her2+
- started a/c four doses
-Aug 07 -DX w/ bone mets to shoulder and rib 10 days rads
- 6 mths taxol
-6 mths abrexene
- Nov 07 started herceptin still on
- was on tamoxifin wasn't working, gettin something new soon


Aug 09
- brain mets
- 3 tumors
- highest being 4cm large
- others under 2cm
- WBR rads in morning, than afternoon hitting each one direct
- rads to vertebrate

- Sept 09
- getting ready to start Xeloda
- continue herceptin
- just finished w/ rads on brain mets, and vertebrate

(think im doing this right now)
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