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Old 02-22-2010, 12:55 PM   #1
dchips1
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Started Tykerb today

How many doses or how long after taking the first dose (1000 mg), has others experienced side effects? Almost 8 hours after first dose at the moment feel about the same as I have been. My husband even called home to make sure I was still ok, I laughed and said well I have not turned purple yet or totally crazy potty(poop) runs yet!!! It's kinda weird the little bit of fear when I look at 4 orange pills in my hand. I have gotten tons of meds IV over the last few months and years without thinking much about it (except for the 1rst chemo in 2006), yet the fear of those 4 orange pills definatly sent me to my knees in prayers, and then you know it is all going to be ok because God says so, he got me this far!!!

Darita
__________________
dx 1/06 IDC 2cm 38 at dx
2/06 L mast nodes 3/9+ SNB neg ER-/Pr - her2 + Stg 4 liver/pelvis
3/06-9/06Taxol/Carbo/zometa/Herceptin
3/07 6 brain mets WBR down to c-2
4/07 osteonecrosis jaw
1/08 mri new 9mm lesion right lower side
2/08 gamma knife 1 lesion 11/08 regamma
10/09 latent rad necrosis to brain met,
1/20/10 crani: lesion necrosis w active cells continue her add tykerb
1/11 NED just Ingrown toenail! YEAH GOD
8/11 Tykerb, herceptin weekly, elevated her2 levels, negative scans
oct -march 11 new neuro deficits lower legs
3/12 2 spinal metsTykerb, Herceptin
04/12 4050cGY rads T 2-4 & T7-9
5/12 Brain,cervical lumbar clear/thoracic slight decrease
10/12 t 2-4 shrunk t-9 grew start Xeloda, 02/13 stop xeloda,5/13 on metformin, decadron, Tykerb, iv and IT herceptin 5/30/13 total #11 #2 of 80mg dose weekly.
9/13 100mg of IT her, IV hern, 750 mg tykerb, 3mg dec.
last Mri T--3 SHRUNK t7-9 shrunk no edema. Left shift in CBC bone marrow BX negative.
10/13 Ct has shown Double left ureters with stones/cysts in them, after 3 births and lots and U/S iit takes cancer to figure out you have 2 smaller ureters going into 1 kidney!
12/13 Mri brain no new lesions, cervical and lumbar arthritis.
Tspine lesion at T3 stable, T 7-9 GROWTH lots of pain

1/29/14 HIHO HIHO its off to Neuro surgery I go





Life is Good when you wake up in the morning and take a breath and know that God has given me another day.


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Old 02-22-2010, 03:18 PM   #2
VirginiaGirl
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Re: Started Tykerb today

Hi Derita,
I started Tykerb/Xeloda about 10 days ago, and so far, so good, though I have forgotten to take it a couple times, still getting used to a new routine. I've had bad diarrhea only one time so far, but don't know if it's from the tykerb or the xeloda, and two immodium took good care of it. I've been a little freaked out, too, expecting the worst, I poured over everyone's posts about side effects and what was helpful and stocked up on all kinds of stuff. I started taking a probiotic supplement, which is supposed to be good for diarrhea, and since I've had no more problems I'm assuming it helps. I think the meds do build up in your system, though, so I'm not singing Hail Mary yet. Good luck with it!
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Liz
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
7/10 - start taxotere/carboplatin/herceptin

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Old 02-23-2010, 06:31 AM   #3
dchips1
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Time to side effects

day 2, so far so good as well here. But I too have been taking the acidophilis, and eat a yourgurt a day.
Take care Darita
__________________
dx 1/06 IDC 2cm 38 at dx
2/06 L mast nodes 3/9+ SNB neg ER-/Pr - her2 + Stg 4 liver/pelvis
3/06-9/06Taxol/Carbo/zometa/Herceptin
3/07 6 brain mets WBR down to c-2
4/07 osteonecrosis jaw
1/08 mri new 9mm lesion right lower side
2/08 gamma knife 1 lesion 11/08 regamma
10/09 latent rad necrosis to brain met,
1/20/10 crani: lesion necrosis w active cells continue her add tykerb
1/11 NED just Ingrown toenail! YEAH GOD
8/11 Tykerb, herceptin weekly, elevated her2 levels, negative scans
oct -march 11 new neuro deficits lower legs
3/12 2 spinal metsTykerb, Herceptin
04/12 4050cGY rads T 2-4 & T7-9
5/12 Brain,cervical lumbar clear/thoracic slight decrease
10/12 t 2-4 shrunk t-9 grew start Xeloda, 02/13 stop xeloda,5/13 on metformin, decadron, Tykerb, iv and IT herceptin 5/30/13 total #11 #2 of 80mg dose weekly.
9/13 100mg of IT her, IV hern, 750 mg tykerb, 3mg dec.
last Mri T--3 SHRUNK t7-9 shrunk no edema. Left shift in CBC bone marrow BX negative.
10/13 Ct has shown Double left ureters with stones/cysts in them, after 3 births and lots and U/S iit takes cancer to figure out you have 2 smaller ureters going into 1 kidney!
12/13 Mri brain no new lesions, cervical and lumbar arthritis.
Tspine lesion at T3 stable, T 7-9 GROWTH lots of pain

1/29/14 HIHO HIHO its off to Neuro surgery I go





Life is Good when you wake up in the morning and take a breath and know that God has given me another day.


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Old 02-23-2010, 11:32 AM   #4
jml
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Re: Started Tykerb today

When I was on Tykerb/Xeloda I had a hard time trying to figure out the dosing schedule, since Tykerb is on am empty stomach once a day, but Xeloda is with food twice a day.

At first I was waking up in the morning, taking the Tykerb, waiting an hour to eat take the Xeloda, the out the door.
That did really work for me bc I just didn't feel well running out the door to go teach Pilates after uploading all this drug.
So I made an adjustment.

Here's what worked for me - just another option...

Tykerb @ bedtime - ofcourse no food 2 hrs prior.
Xeloda w/breakfast, then 10-12hrs later, 2nd dose with dinner.

This schedule also helped me break the habit of post
dinner snacking!

Wishing you best of luck & best response with this combo~

Keep the faith~
Jessica
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Old 03-02-2010, 07:55 AM   #5
LoriG
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Re: Started Tykerb today

Funny, when I took the Tykerb the first time I was expecting an immediate rash and diarrhea! I had one episode with a rash for a few days but no issues with diarrhea. I have been on the combo sicne the end of December.
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*IBC (ER+,PR-,Her2+) on right diagnosed 8/09 with metastatic lymph node left axilla (Er-,PR-,Her2+) vs possible bilateral breast cancer
*A/C x4
*Taxol x4 with weekly herceptin
*Breast MRI 12/09- no improvement
*PET scan 12/09- no evidence of mets
*Tykerb/Xeloda 12/09
*Bilateral MRM 4/10
*Twice daily rads to both chest walls and both axillas 5/10-6/10
*9/10 PET/CT- NED
*Tykerb/Xeloda until 12/10
*Tykerb and Tamoxifen 12/10-current. Bye bye Xeloda
*2/11- malignant pleural effusions bilaterally (likely lymphangitic lung mets) and skin mets
Herceptin and Ixempra
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Old 03-02-2010, 10:58 AM   #6
vlcarr
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Re: Started Tykerb today

I didn't have any issues with diarrhea either nor did I get a rash. I did discover I could not eat salads--that would give me diarrhea. I did get mouth sores around the middle of the study and my potassium dropped really low. They gave me a drip of it and pills to take daily. After that I felt much better.
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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
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Old 03-02-2010, 05:23 PM   #7
dchips1
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side effects

Today is day 9 and only occassional "Poop" problems. No rash yet, so so far so good!!

Take care to all

Darita
__________________
dx 1/06 IDC 2cm 38 at dx
2/06 L mast nodes 3/9+ SNB neg ER-/Pr - her2 + Stg 4 liver/pelvis
3/06-9/06Taxol/Carbo/zometa/Herceptin
3/07 6 brain mets WBR down to c-2
4/07 osteonecrosis jaw
1/08 mri new 9mm lesion right lower side
2/08 gamma knife 1 lesion 11/08 regamma
10/09 latent rad necrosis to brain met,
1/20/10 crani: lesion necrosis w active cells continue her add tykerb
1/11 NED just Ingrown toenail! YEAH GOD
8/11 Tykerb, herceptin weekly, elevated her2 levels, negative scans
oct -march 11 new neuro deficits lower legs
3/12 2 spinal metsTykerb, Herceptin
04/12 4050cGY rads T 2-4 & T7-9
5/12 Brain,cervical lumbar clear/thoracic slight decrease
10/12 t 2-4 shrunk t-9 grew start Xeloda, 02/13 stop xeloda,5/13 on metformin, decadron, Tykerb, iv and IT herceptin 5/30/13 total #11 #2 of 80mg dose weekly.
9/13 100mg of IT her, IV hern, 750 mg tykerb, 3mg dec.
last Mri T--3 SHRUNK t7-9 shrunk no edema. Left shift in CBC bone marrow BX negative.
10/13 Ct has shown Double left ureters with stones/cysts in them, after 3 births and lots and U/S iit takes cancer to figure out you have 2 smaller ureters going into 1 kidney!
12/13 Mri brain no new lesions, cervical and lumbar arthritis.
Tspine lesion at T3 stable, T 7-9 GROWTH lots of pain

1/29/14 HIHO HIHO its off to Neuro surgery I go





Life is Good when you wake up in the morning and take a breath and know that God has given me another day.


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Old 03-06-2010, 05:28 AM   #8
VirginiaGirl
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Location: Fredericksburg, VA
Posts: 93
Re: Started Tykerb today

I'm in the middle of my second cycle of T/X, so far still only occasional D. I had a serious bout after eating a large apple with lunch one day, so I've gone back to bananas, and try to eat a baggie of fresh veggies a day for fiber and bulk and I believe that's helping, as well as the probiotic. No sign of any rash, though, I can't believe I actually want to see a rash on my face! I had started to have a cut or two and some minor burning sensation around my thumb nail, but that went away on my off-week of Xeloda. It has been a bit challenging to remember to take the different meds on full/empty stomach, (I split my tykerb to 2 in the am and 3 in the pm at bed) but I noticed it has helped me cut out after dinner snacking, too! Sometimes I think that's a good thing, other times, MAN! I want some ice cream!
__________________
Liz
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
7/10 - start taxotere/carboplatin/herceptin

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Old 03-06-2010, 12:01 PM   #9
Barbara H.
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Re: Started Tykerb today

See my post on the main message board.
Barbara
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Old 03-06-2010, 05:09 PM   #10
Jackie07
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Re: Started Tykerb today

http://her2support.org/vbulletin/showthread.php?t=44073

http://her2support.org/vbulletin/showthread.php?t=43593
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