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Old 06-18-2007, 02:21 PM   #1
Esther
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Tykerb/Xeloda dosing

I just want to remind everyone...if you are having trouble with the initial dosage that your dr prescribes for you, talk to him about reducing the dosage.

I reduced the Tykerb to 3 when the side effects were bad, and still received tremendous benefits while dimishing the side effects. I only take 2 Xeloda twice a day on a one week on/ one off schedule.

It's better to reduce your dosage and continue taking it then to stop taking it altogether. Once the side effects were pretty much gone, I just upped the Tykerb to 4 pills a day, and have seen no increase in side effects, though I am seeing more fatige with 4 pills a day than the 3 pill a day schedule.
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Old 06-18-2007, 05:55 PM   #2
chrisy
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Esther, you must be "exquisitely sensitive" to these medications. Good for you taking control of this - and thanks for reminding folks that they can adjust the doese. The doses usually used are the "maximum tolerated dose" but not necessarily the optimum dose.

I got the dose reduced on the steroid when I was getting chemo, and I'm so glad I did! The "exquisitely sensitive" was how my surgeon described me when I couldn't stop feeling nauseous 16 hours after surgery. Little did we all know that the only problem was I needed to get something in my stomach! I guess I was also exquisitely sensitive to starvation....
__________________
Chris in Scotts Valley
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.
3/13 TACE procedure
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Old 06-18-2007, 06:53 PM   #3
Carolyns
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Hi Esther and Chrisy,

My doctor does the same thing. She cuts back on the dosage. Good advise.

Chrisy, I like the sounds of "exquisite" when used to describe me...I'd take it any way I could. Maybe I am too.

I got my dose of Gemzar reduced...or a least I went from 3 weeks on and one off to 2 weeks on and one off.

Love, Hope, and Peace,

Carolyn
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Old 06-19-2007, 10:02 PM   #4
SoCalGal
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Me Too

I am on a reduced dose due to side effects and can tolerate 4 tykerb a day. When I try to go up to 5 the fun begins so my doc told me to stay on 4. It makes me a little nervous but I don't really have a big choice. As Esther says, it's important to stay on so 4 it is. I am on 4 xeloda a day - divided into 2 doses. Okay - just wanted to post a quick reply along with a quick hello!
Flori
__________________
1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.

3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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Old 06-27-2007, 06:23 AM   #5
julierene
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I have been dealing with the diarreaha and my hands and feet are pretty harsh. I am wondering about switching to 4 tablets of tykerb and not sure what I can do about the Xeloda. I take 3 tablets twice a day on that. I weigh about 145 and I'm 5'3. Do you think I can get away with less Xeloda? If so, how much?
__________________
Jan04: Bilateral Mastectomy at age 28
Initial DX: Left Breast: IDC 2cm, Grade 3, HER2+3, 0 Nodes +, ER/PR-. Right Breast: Extensive DCIS ER-/PR+; Stage 1-2a
Feb04-Apr04: 4 AC, dose dense
Aug 04: 4 Taxotere
Dec 05: Bone and Liver METS; Stage 4. Carboplatin/Taxol/Herceptin. DX with Li-Fraumeni Syndrome
Apr 06: NED, maintenance Herceptin
Apr 07: CA1503=14; masses in liver; Xeloda/Tykerb
Nov 07: NED, Tykerb maintenance
Sept 08: Liver mets again, on Tykerb/Xeloda again, CA=19 and 27
Nov 08: Progression, Tykerb/Gemzar, CA=25
Dec 08: Progression, Herceptin/Navelbine, CA=40, 57, and 130
Jan 09: Progression in bone, recession in liver, Herceptin/Carbo/Abraxane CA=135
June 09: CA27/29=24, chemo break
Sept 09: Progression, CA=24, waiting on clinical trial (4 weeks no treatment)
Nov 09: now have brain mets, trial "on hold", getting 14 WBR treatments starting 11/2/09
Dec 09: possible start on p53 trial
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Old 06-27-2007, 09:29 AM   #6
SoCalGal
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Location: LA LA Land
Posts: 1,607
dosing

I am on 4 tykerb and 4 xeloda a day. (Was reduced from 5 tykerb about 3 weeks ago due to excessive diva probs.) (As in Diarrhea Diva).

Okay - I am 5'7" and weigh 120 lbs. I don't know if it goes by weight or constitution. Less always works just as well as more for me.

I liked writing about my hair. Not so crazy posting my height and weight. Funny how we are.

You should call your doc and ask what he wants you to do based on your symptoms. That is what I ALWAYS do. YOu have nothing to loose from his opinion. Good luck,
--Flori
__________________
1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.

3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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Old 06-27-2007, 09:52 AM   #7
Lala
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Posts: 131
I started out at 3600mg Xeloda and 1250mg Tykerb but had to lower the doses due to the side effects. The hand and foot syndrome and diarrhea were no fun. I am currently on a dose of 2500mg of Xeloda and 1000mg of Tykerb. My Xeloda schedule is 1 week on 1 week off.

I have found that the lower doses are easier to handle; but the schedule of Xeloda makes it even better. In addition I use a diet that helps avoid diarrhea and I do take the daily imodium as a back up. I have heard of doses of Xeloda at 2000mg being as effective as higher doses with out the toxicity. For me the main problem was the Xeloda dose being way too high.
I know I am continuing to respond at the lower doses so that eases my mind.
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Lala
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 07-01-2007, 08:43 AM   #8
GemmaG
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Location: Bergenfield, NJ
Posts: 121
I'm also on a reduced dose due to side effects. From 5 pills/day to 3pills to 4pills now back to 3pills/day plus 2pills of Xeloda. My skin is so dry and It's not fun at all. I feel so tired all the time but still working Monday-Friday 9to5. Have no choice.
I've been having so much pain for the past few days. I'm taking Oxycodone for pain at bedtime. I just felt a new lump again last night (right armpit) it's bigger than the one they saw from the CT scan about four weeks ago. They didn't even see this one from the last test. HOw could it grow so fast!? It didn't even show in my ultrasound, only that pea size tumor.
Does that mean I'm not responding to my TYkerb treatment? What's next?
Sorry for sounding negative.
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Old 07-01-2007, 05:59 PM   #9
SoCalGal
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Location: LA LA Land
Posts: 1,607
heart palpatations too

Last night, at midnight, out of the blue, my heart started palpatating - not that fast, but hard and irregular - felt like it was jumping around inside of me.

I was very scared - it lasted for over an hour. I took a bunch of ativan to calm my system and felt that I could wait one hour. I just didn't want to go to the ER. My b/f said if it was a heart attack I'd have more symptoms by one hour. Thank god he was over last night. Finally, at around 1:30 I fell asleep with him on the couch - where I made him follow me because I couldn't find a place for myself. Today I awoke with MAJOR anxiety this morning. At least the heart jumping stopped. Took some ativan and have been pretty much myself for the whole day. Did NOT take any tykerb today. It's my week off xeloda.

Tomorrow I see my Onc. We'll see what he says, if anything.

Girls:
lumps, bumps, rashes, the runs, pain, nausea, baldness, bad results, good results, markers here, there, everywhere and everything with a hefty dose of FEAR along with discomfort. We've had it all. GemmaG - you don't sound negative. You sound "normal". We are here for you. Stay steady - tomorrow's a new day. xoxoFlori
__________________
1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.

3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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Old 07-01-2007, 08:44 PM   #10
hutchibk
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Hi Flori - you may need a muga - as there is a chance that Tykerb can have some heart effect similar to Herceptin... I am sending good thoughts your way. And to Gemma, too!
__________________
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 07-05-2007, 07:00 PM   #11
Odette
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Location: Shaker Heights, Ohio
Posts: 86
New Research On Xeloda Dosing

Hello Friends,

At the Chicago Clinical Oncology Conference they reported about this trial.
I have heard about it before: the main idea is that you take a slightly higher dose of Xeloda for one week, then take a week off.
The reason: maximum effect of capecitabine on or around Day 7, with minimal additional benefit beyond Day 8.

Here is the website if you are interested:
http://clinicaloptions.com/Oncology/...ules/1045.aspx

I will discuss this with my oncologist next I see him.

Best wishes to all,

Odette
__________________
May 18, 2006 Age 52,
Diagnosed infiltrating ductal carcinoma
er/pr- HER2 + 3.9 by FISH
June-August 2006 AC chemo
August-October 2006 Taxotere + Herceptin
November 18, 2006 Mastectomy 16 involved lymph nodes
Jan 2, 2007 start radiation
Stage IV, Jan 12, 2007 recurrence in cervical lymph nodes while on Herceptin, stopped Herceptin
Rad oncologist extended the radiation field, good response
Started Tykerb Xeloda on beginning of May 2007
Progression to lungs and conglomerate lymphadenopathy July 2007
Undecided about next treatment

'One does not get to choose one's adventures'

I'm experimenting with my diet, using green tea, flax seed curry and olive oil

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Old 07-13-2007, 06:21 AM   #12
MichelleH
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Location: Northern Michigan
Posts: 68
Question I have a ? for all of you that have their dose redused by doc

I am (actually was ) on 5 Tykerb and 6 Xeloda daily. At week 5 on these drugs, I have developed the hand & foot syndrome. The doc immediately told me to stop taking the Xeloda for a week or two until the hand & foot syndrome clears up, then he plans on redosing the Xeloda. I am still taking 5 Tykerb daily.

I was wondering if any of you out there have been told to stop taking the Xeloda or Tykerb until side effects clear up.
Thanks for any input.

Michelle
__________________
Sept. 2003- 5cm tumor in left breast Her2+ Er- Pr- grade 3,
Mastectomy & 11 nodes removed, all negative.
4 rounds A/C + 12 wky Taxol
25 rads
Dec 2006- recurrence Stage IV (diagnosed 3 days before Christmas!) Lymph nodes in chest, liver, 3 ribs
January 2007- 3 tri wkly rounds of Taxol/Herceptin
Response to lymph nodes in chest, but several more bone mets (skull, shoulders, more ribs, femur, several on spine), liver tumors still growing.
March 2007- 8 wkly rounds of Navelbine/Herceptin/ every 4th wk Zometa
Lymph nodes in chest look great, but more bone mets (of course!), Clavicles, hips, and sacrum (above tail bone) to add to the list. Liver mets still growing.
June 5- started Tykerb/Xeloda

Aug 14- Scans are showing great progress! Tumor shrinkage and bones are healing!

Nov 21 CT scan shows tumor growth in liver & bones next Doc appt on 11-27

Dire need of a lot of prayers and a miracle.
Stay at home mom, 5 yr old girl & 8 yr old boy.
Wife of loving husband
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Old 07-13-2007, 06:37 AM   #13
Mykentuckyhome
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Posts: 34
dosing of xeloda and tykerb

hi michelle, I have been thru 3 cycles of xeloda and tykerb and 3 times my onc had to stop all drugs for a period of 4 to 5 days added to my week off cause between the hands and feet syndrome and diarrhea they drug me down so far. This cycle I take only 3 xeloda a day and 2 tykerb. I am on my 8th day of the cycle and I feel like a human being again. In order for the symptoms to stop you must stop until they dissapate. Hopefully your onc will find a happy medium with your dosage. Good luck, I know firsthand how painful the hands and feet syndrome can be. linda
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Old 07-13-2007, 07:29 AM   #14
Odette
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Join Date: Apr 2007
Location: Shaker Heights, Ohio
Posts: 86
Did you see the link on my previous post?

Michelle,

I'm printing the summary for my oncologist right now. I'd like to be on the one week on one week off schedule.

Best,

Odette
__________________
May 18, 2006 Age 52,
Diagnosed infiltrating ductal carcinoma
er/pr- HER2 + 3.9 by FISH
June-August 2006 AC chemo
August-October 2006 Taxotere + Herceptin
November 18, 2006 Mastectomy 16 involved lymph nodes
Jan 2, 2007 start radiation
Stage IV, Jan 12, 2007 recurrence in cervical lymph nodes while on Herceptin, stopped Herceptin
Rad oncologist extended the radiation field, good response
Started Tykerb Xeloda on beginning of May 2007
Progression to lungs and conglomerate lymphadenopathy July 2007
Undecided about next treatment

'One does not get to choose one's adventures'

I'm experimenting with my diet, using green tea, flax seed curry and olive oil

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Old 07-13-2007, 11:56 AM
MichelleH
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Old 07-15-2007, 11:27 AM   #15
MichelleH
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Join Date: May 2007
Location: Northern Michigan
Posts: 68
Smile Xeloda/Tykerb dosing

Thank you linda for taking the time to respond to my post. It is what I need (comparing notes) to assure myself that my doc is in check.
Thanks again, Michelle
__________________
Sept. 2003- 5cm tumor in left breast Her2+ Er- Pr- grade 3,
Mastectomy & 11 nodes removed, all negative.
4 rounds A/C + 12 wky Taxol
25 rads
Dec 2006- recurrence Stage IV (diagnosed 3 days before Christmas!) Lymph nodes in chest, liver, 3 ribs
January 2007- 3 tri wkly rounds of Taxol/Herceptin
Response to lymph nodes in chest, but several more bone mets (skull, shoulders, more ribs, femur, several on spine), liver tumors still growing.
March 2007- 8 wkly rounds of Navelbine/Herceptin/ every 4th wk Zometa
Lymph nodes in chest look great, but more bone mets (of course!), Clavicles, hips, and sacrum (above tail bone) to add to the list. Liver mets still growing.
June 5- started Tykerb/Xeloda

Aug 14- Scans are showing great progress! Tumor shrinkage and bones are healing!

Nov 21 CT scan shows tumor growth in liver & bones next Doc appt on 11-27

Dire need of a lot of prayers and a miracle.
Stay at home mom, 5 yr old girl & 8 yr old boy.
Wife of loving husband
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Old 08-06-2007, 12:24 PM   #16
awjkej
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Location: Gold River, CA
Posts: 10
Hi Lana,

Thank you for directing me to this thread (from breastcancer.org). I just talked with my onc and he said to not take tykerb (currently 1250 mg - 250 mg tablets so five a day) til I see him on this Thursday due to my bad rash on my face. I am on my off week of xeloda (3300 mg - 2weeks on/ 1 week off). So we will see what he says re dosing.

It has been informative to read about the other dosings of this treatment regimen, so when I see my onc I will be able to at least ask him some questions.

Thank you again!
Anne
__________________
"Faith is the bird that feels the light when the dawn is still dark." --Rabindranath Tagore


Diagnosed Jan 2003
Bilateral Mastectomy (right prophylatic) Feb 2003
No reconstruction and no prosthesis - what you see is what you get :-)
6 rounds A/C ending August 2003
Tamoxifen til October 2004
Bone mets diagnosed October 2004
Herceptin (weekly) & Zometa (monthly) December 2004 - June 2007
Arimidex, Faslodex
Oophorectomy October 2005
Rads to left hip November 2005 - December 2005
Zometa quarterly now January 2007
Taxotere December 2005- July 2006
Tykerb (1250 mg) and Xeloda (3300mg) July 2007
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Old 08-06-2007, 01:14 PM   #17
Lala
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Location: South Florida
Posts: 131
Welcome Anne
Glad you found this site.
I hope your rash goes away quickly. I had to lower my dose of both drugs in order to get relief. Hopefully your oncologist will be able to tinker with the dose to make it tolerable for you.
Sending you hugs.. hang in there!
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Lala
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 08-06-2007, 05:18 PM   #18
Mykentuckyhome
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Join Date: Jun 2007
Posts: 34
hi everyone, Just wanted to to let people know that although I have been taking a reduced dose of both tykerb/ xeloda I had my first scan since being on the drugs and it was all good news. Spots on my liver were fewer and smaller, and although the bone scan is hard to tell a difference I know that the 2 spots I have on my spine are much better due to reduced pain. I was even able to play 9 holes of golf in celebration. So for all of you worried that a reduced dosage might not be effective enough, have faith and all will be well. Yipeeeee! linda
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