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Old 04-02-2012, 02:20 AM   #1
Mandamoo
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Location: Melbourne, Australia
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eloda and tykerb optimum dosage

Can anyone help out with information on what the optimum dosages are?
I am currently on 4000mg of Xeloda daily (2000mg x twice a day) and tykerb 5 tablets a day
I have now done two cycles - was fine on the xeloda alone then added the Tykerb and the diarrhoea hit but it resolved with the week off the xeloda. I have now done a second cycle with both drugs but in my current week off the xeloda the diarrhoea hasn't resolved, my appetite is very poor and the fatigue is incredible.

My oncologist has suggested a dose reduction - to 7 pills a day (instead of 8) of the xeloda and keeping the Tykerb at 5 a day. Another option is to reduce to 6 xeloda a day and 4 tykerb.

Is there any data about what doses are effective. I am seeing a great result on my skin and hope to see the same in my lungs but I don't know if I can keep going at the current dosage. I want it to still be effective though…

Any tips from those who have used this in the past?
Thanks,
Amanda x
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Amanda xx
40 year old Mum to three gorgeous kids - son 5 and daughters 8 and 11
Wife to my wonderfully supportive husband of 17 years!
22 February 2011 - Diagnosed Early Breast Cancer IDBC Stage2b (ER/PR -ve, Her2+ve +++) - 38 years old
(L) skin sparing mastectomy with tissue expander, axilla clearance (2/14 affected) clear margins.
Fec*3, Taxotere and herceptin*2 - stopped due to secondary diagnosis

June 24 2011 Stage IV - Skin met, axilla node, multiple lung lesions

Bolero3 trial - Navelbine, Hereptin weekly, daily Everolimus/Placebo
February 2012 - July 2012 Tykerb and Xeloda - skin mets resolved, Lungs initially dramatically reduced but growing again
August 2012 (turn 40!) tykerb and herceptin (denied compassionate use of TDM1) while holidaying in Italy!
September 2012 - January 2013 TDM1 as part of the Th3resa trial - lymph nodes resolved, lungs slowly progressing.
January 2013 - herceptin, carboplatin and Perjeta (compassionate access)
April 2013 - Some progression in lungs and lymph nodes - Abraxane, Herceptin and Perjeta
July 2013 - mixed response - dramatic reduction of most lung disease, progression of smaller lung nodules and cervical and hilar nodes - ? Add avastin.
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Old 04-02-2012, 05:52 AM   #2
KristinSchwick
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Re: eloda and tykerb optimum dosage

Amanda,
I was on Tykerb and Xeloda and benefited from it as well (for awhile). My onc. said that they never did a dose escalation study for these drugs- odd. And what is more weird, they don't take into account the body mass for each patient- so I would get the same dose as a 300 lb patient. Very odd.

What he did say is that he believes that the drugs are probably effective at lower doses and that decreasing the doseage was not going to determine success or failure. But that was just his opinion.

Don't know if that helps- hope you have some other gals chime in with more informative replies.
Kristin
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[B]Kristin
Aug 2010: diagnosed stage 3b, 4 mo. after birth of son. 29 yrs old and breastfeeding, ER/PR-, Her-2+ started Neoadjuvant therapy: 4x FEC, 10x abraxane & Herceptin
Feb 2011: L mx with recon. Path. showed only DCIS but 4/10+ nodes.
March 2011: 6 wks rads.
Mother passed, lower back pain.
Late May 2011: Bone mets but organs clear; Tykerb, Xeloda, Xgeva. Stopped Herceptin. Implant infected: removed implant.
October 2011: Bone progression; Gemzar and Carboplatin & restarted Herceptin.
Jan 2012: Progression, re-classified as ER+; Tykerb, Herceptin, Zoladex & Femara. Anti-E is working!
May 2012: ovaries out, markers stable but elevated. Cont. Herceptin, Tykerb, Xgeva & Femara.
Dec 2012: aromasin
Jan 2013: faslodex, herceptin, tykerb
Jun: Kadcyla
Aug: Rads to hip, then Perjeta, Herceptin & Taxotere
Nov 2013: Perjeta, Herceptin, Halaven
Early 2014: Affinitor, Aromasin, Perjeta, Herceptin.
June 2014: Estradiol, Perjeta, Herceptin
Aug 14: Tamoxofin, H & P
http://kristin-notdying-blog.blogspot.com/
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Old 04-02-2012, 09:25 PM   #3
Mandamoo
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Re: eloda and tykerb optimum dosage

Thanks for your reply Kristin - My onc seems to feel the same way. It is weird about the dose and weight - maybe it comes down to our our body metabolises it as an oral form or something? I am only 132lb and from what I can see taking quite a large dose so I am going to drop one xeloda tab from tomorrow and see if this eases the fatigue and belly stuff a little. I feel good today but this is the last day of my off week!
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Amanda xx
40 year old Mum to three gorgeous kids - son 5 and daughters 8 and 11
Wife to my wonderfully supportive husband of 17 years!
22 February 2011 - Diagnosed Early Breast Cancer IDBC Stage2b (ER/PR -ve, Her2+ve +++) - 38 years old
(L) skin sparing mastectomy with tissue expander, axilla clearance (2/14 affected) clear margins.
Fec*3, Taxotere and herceptin*2 - stopped due to secondary diagnosis

June 24 2011 Stage IV - Skin met, axilla node, multiple lung lesions

Bolero3 trial - Navelbine, Hereptin weekly, daily Everolimus/Placebo
February 2012 - July 2012 Tykerb and Xeloda - skin mets resolved, Lungs initially dramatically reduced but growing again
August 2012 (turn 40!) tykerb and herceptin (denied compassionate use of TDM1) while holidaying in Italy!
September 2012 - January 2013 TDM1 as part of the Th3resa trial - lymph nodes resolved, lungs slowly progressing.
January 2013 - herceptin, carboplatin and Perjeta (compassionate access)
April 2013 - Some progression in lungs and lymph nodes - Abraxane, Herceptin and Perjeta
July 2013 - mixed response - dramatic reduction of most lung disease, progression of smaller lung nodules and cervical and hilar nodes - ? Add avastin.
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Old 04-03-2012, 05:30 AM   #4
KristinSchwick
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Location: Iowa
Posts: 231
Re: eloda and tykerb optimum dosage

I too had to decrease my doseage of both Xeloda and Tykerb- I went to 7 tablets of Xeloda and 4 tablets of Tykerb. Some things I found helpful for the belly stuff- I cut out most all dairy products unless they are lactose free. Lactose free milk is really good, as are soy and almond milk. I don't eat anything that is especially greasy- like pizza, and really avoid cheeses. I am still on 4 tykerb and this limits the bathroom visits to 1x day- which I can live with. I do remember the diahrrea being so bad, I felt like I couldn't eat anything when it was my xeloda weeks. Doc says then to go with the BRAT diet until my tummy would settle down (a day or so)- bananas, rice, applesauce and toast.

Are you seeing a response with the drugs? I saw a good drop in my tumor markers within a few months of starting that combo- sadly though, it didn't last beyond 5 months. I hope it does the trick for you! Hopefully you can find a dose that you and your doctors are happy with.
__________________
[B]Kristin
Aug 2010: diagnosed stage 3b, 4 mo. after birth of son. 29 yrs old and breastfeeding, ER/PR-, Her-2+ started Neoadjuvant therapy: 4x FEC, 10x abraxane & Herceptin
Feb 2011: L mx with recon. Path. showed only DCIS but 4/10+ nodes.
March 2011: 6 wks rads.
Mother passed, lower back pain.
Late May 2011: Bone mets but organs clear; Tykerb, Xeloda, Xgeva. Stopped Herceptin. Implant infected: removed implant.
October 2011: Bone progression; Gemzar and Carboplatin & restarted Herceptin.
Jan 2012: Progression, re-classified as ER+; Tykerb, Herceptin, Zoladex & Femara. Anti-E is working!
May 2012: ovaries out, markers stable but elevated. Cont. Herceptin, Tykerb, Xgeva & Femara.
Dec 2012: aromasin
Jan 2013: faslodex, herceptin, tykerb
Jun: Kadcyla
Aug: Rads to hip, then Perjeta, Herceptin & Taxotere
Nov 2013: Perjeta, Herceptin, Halaven
Early 2014: Affinitor, Aromasin, Perjeta, Herceptin.
June 2014: Estradiol, Perjeta, Herceptin
Aug 14: Tamoxofin, H & P
http://kristin-notdying-blog.blogspot.com/
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Old 04-03-2012, 05:11 PM   #5
yanyan
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Posts: 403
Re: eloda and tykerb optimum dosage

Hi Mandamoo ! I hope Tykerb and Xeolda will bring you to NED ! I will also be on this combo for the recurrence. At first my doctor mentioned using Abraxane...my guess is since there is no mets elsewhere, they are holding off on the big chemo guns-- i call them big because they make me lose hair but actually i heard Xeolda and tykerb are pretty strong stuff too !
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1/11 age 36 DX
ER/PR-, Her2 +
TCH*6, Herceptin
BMX with immediate recontruction 5/2011 Lattismus Flap- Dx stage 3c 10/23 nodes
9/11 Radiation
3/12 Local recurrence to skin stage IV
Whole body scan CLEAR
4/12 Tykerb & Xeolda Skin mets slowly regressing
8/12 PET & Brain CT Clear
5/13 Skin mets progressing
6/13 PET scan chestwall recurrence in contralateral anxillary,internal mammary and ipsilateral subpectoral nodes
6/13 kadcyla
10/13 whole body scan -clear NED. previously resolved skin rash gone but 3 new lesions. Biopsy confirmed for skin recurrence
11/13 to 02/14 tykerb & herceptin
02/14 add abraxane/gemzar, 2 weeks on 1 week off at reduced dose
05/14 whole body PET clear/ brain CT clear but skin mets are getting worse, ready for new chemo
05/14 navelbine perjeta herceptin
07/14 skin mets progressing red rash worse
08/14 wide local excision with diep flap to close wound. Final path shows 2 positive margins showing inflammatory carcinoma Going back to surgery in 2 weeks
09/01/14 resection- clear margins
3 weeks after 2nd surgery, a new nodular rash found near drain incision with 2 small red spots behind the chest wall biopsy on 10/1. Positive for breast cancer
Radiation 11/2014 with xeloda then weekly cisplatin
11/14 brain MRI clean
12/14 finished 33 radiations burnt and very painful. Bedridden for 1 week
12/14 t current Herceptin and perjeta only
02/15 rash on upper back right side skin mets radiation planned
02/15 staring electron radiation *35
Stopped at 30 due to severe skin burn, resumed 10 days later
05/15 red patches appeared in between previously radiated area, skin mets. Ct and brain Mri clear. Simulation planned, radiation to start after trip to Alaska.
05/24 new spot identified in scar line on previously radiated reconstructed breast- electron on both side chest wall area and scar line
07/15 multiple skin and lung recurrence begin halaven
11/15 cough much better but very tired on halaven and starting to see some new red skin blotches-suspicious
11/15 heading to China for immune therapy
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Old 04-10-2012, 09:32 AM   #6
bevilj
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Posts: 18
Re: eloda and tykerb optimum dosage

Hi Amanda,

Sorry you are experiencing side effects with the Xeloda/Tykerb combo. I had a horrible time when I first started as well.

I take 5 Tykerb pills every morning when I wake up (found this works better for me than taking them at night). I was taking 2 Xeloda in the AM and 2 more at night (2 weeks on, 1 off). The combo of the pills was too harsh for me - fatigue, GI issues, hand/foot, depression, etc - so we changed to 1 pill in the AM and 1 at night. A few weeks ago I appealed to my onc and have cut out the Xeloda completely (I had been on Xeloda for a year before adding in the Tykerb). The Tykerb (still 5 pills/day) seems to be working great on it's own still. Now that my dosage has changed, I feel like a whole new person.

I hope you fid the optimal dosage for you - I think everyone is different.

All my best, Jen
__________________
6/09 - self exam - lump!
8/09 –Dx - IDC, left breast. Suspicious mass,right breast (more testing required).
9/09 - Double mast/cholecystectomy /nodes removed. IDC confirmed, right breast. liver/bone mets. ER-/PR -/Her2 +. BRCA 1/2 -.
10/09 - Started Taxotere, Carboplatin, Herceptin, Zometa. Hospitalized with Tetany.
1/10 - Finished Taxotere, Carbo, continued Herceptin, Zometa. PET/CT - improvement.
2-3/10 - Rads (25 rounds).
8/10 – inflammation vs. malignancy?
1/11 – progression. started Xeloda.
9/11 – progression. pancreatitis or tumor? Chest ‘rash’ appeared.
10/11 – confirmed pancreatitis. Halted Xeloda.
11/11 – skin mets confirmed.
12/11 - started Tykerb, back on Xeloda.
1/12 – cut Xeloda dose in ˝. skin mets fading!
4/12 - no more Xeloda. skin mets resolved.
8/12 - brain mets found.
9/12 - gamma knife and fractionated brain radiation.
1/13 - progression throughout body. brain mets shrunk/resolved. no more Tykerb.
2/13 - starting T-DM1 trial.
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