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06-29-2008, 07:34 AM
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#1
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Senior Member
Join Date: Feb 2007
Location: Nova Scotia, Canada
Posts: 40
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Question about Xeloda side effects
Good morning, usually just a lurker and learner but today I have a question. I started Xeloda 1800mg twice a day yesterday and I'm wondering about the side effects. Although I have a good idea what to expect I'm wondering when I would start to notice them, so far after only three doses I am thankfull to say no side effects yet. Thanks to all you post regularly for all the great info and help.
__________________
Intial Dx Sept3,2002, age 39
Masct/ Sentinel Node Biopsy Sept 11,2002 node negative
ER/PR- Her2+++, grade 3
Started AC Chemo Nov 2002, 4 rds
2003 NED
May 2004 reconstuction, saline and later silicone implant
Aug 2006 Dx recurrence, lymph nodes chest/lungs/sternum
Dec 2006 Herceptin q three weeks
May 2007 bone mets to sternum
June 2007 aredia for bone mets
June 2007 radiation to sternum X 5
June 2008 slow progression of lung met, all other mets NED, continue Herceptin, Aredia, add Xeloda
July 08 Stopped Xeloda, severe side effects from the drug, but it did a fantastic job after only 12 days at least 50% reduction
Feb 09 Started Navelbine with herceptin, slight progression in lungs.
July 09 - Nov 09 had a Navelbine holiday...
Nov 09 back to Navelbine, Herception
Feb 10, lungs have improved but 4 small lesions on liver, started Taxol, Herceptin....
Taxol not the magic drug for me
Continuing Herceptin,Aredia,and adding Xeloda once again..reduced dose
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06-29-2008, 11:19 AM
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#2
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Senior Member
Join Date: Sep 2005
Posts: 556
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I had xeloda with Herceptin after mastectomy. The only side effect I had was pigmentation of hands and foot, it was very easy to tolorate.
Julie
__________________
Diagnosed in Sept 2004 while pregnant with the second child. Stage 3b, tumor 4.5cm, 4 auxillary and supraclav node positive. Her2+++ FISH 9.4 and er-,pr-.
Had dose dense neoadjuvant AC,Taxol then mastectomy,radiation+xeloda+Herceptin.
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06-29-2008, 04:11 PM
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#3
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Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
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Hi Mrsd! I hope you do well on this treatment. Typical side effects of Xeloda include hand and foot syndrome and diarrhea. Nicola, my wife, was on Xeloda and was told that if she had "uncontrollable" diarrhea, to stop the meds immediately and call her onc. right away. Her onc. had a patient who had really bad D and kept it a secret and tried to "tough it out", and died from renal failure. One great thing about Xeloda- if you have any adverse side effects, the dosage can be reduced. You don't have to stop the meds completely. Try to be proactive with your diet to stave off any possible diarrhea. I think there are a few women here on the site that are/were on Xeloda that can help. I know Hucklebuck is one. Warm thoughts and prayers to you, Bill
__________________
For Nicola
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06-29-2008, 04:36 PM
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#4
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Senior Member
Join Date: Feb 2007
Location: Nova Scotia, Canada
Posts: 40
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Thanks Julie and Bill for your replies, I have just finished day two with no side effects other than a bit of nausea so I am hoping that will be the only problem from this new drug. I have whole summer to enjoy and don't have time for all this treatment stuff that seems to be getting in my way LOL, thanks again.
__________________
Intial Dx Sept3,2002, age 39
Masct/ Sentinel Node Biopsy Sept 11,2002 node negative
ER/PR- Her2+++, grade 3
Started AC Chemo Nov 2002, 4 rds
2003 NED
May 2004 reconstuction, saline and later silicone implant
Aug 2006 Dx recurrence, lymph nodes chest/lungs/sternum
Dec 2006 Herceptin q three weeks
May 2007 bone mets to sternum
June 2007 aredia for bone mets
June 2007 radiation to sternum X 5
June 2008 slow progression of lung met, all other mets NED, continue Herceptin, Aredia, add Xeloda
July 08 Stopped Xeloda, severe side effects from the drug, but it did a fantastic job after only 12 days at least 50% reduction
Feb 09 Started Navelbine with herceptin, slight progression in lungs.
July 09 - Nov 09 had a Navelbine holiday...
Nov 09 back to Navelbine, Herception
Feb 10, lungs have improved but 4 small lesions on liver, started Taxol, Herceptin....
Taxol not the magic drug for me
Continuing Herceptin,Aredia,and adding Xeloda once again..reduced dose
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07-01-2008, 01:02 AM
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#5
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Senior Member
Join Date: Apr 2007
Location: LA LA Land
Posts: 1,607
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Hi-I've been on xeloda a couple of times in the past. It is well tolerated. I used to get diarrhea but nothing severe. If it got severe I would cut down on the next couple of doses. I also felt tired. The hand-foot thing never bothered me on xeloda but now that I've been on tykerb for over a year I have some interesting symptoms at times but not all the time. Tingling. Terrible nails that just peal and are weak so I keep them polished. Sometimes the bottoms of my feet feel like I am walking on crushed glass. Oh well. lol.
Flori
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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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07-06-2008, 06:04 AM
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#6
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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MrsD and Flori
I remember that crushed glass, hot coal feeling on the bottoms of my feet...I called it the flip flop syndrome, which looks pretty stupid in IL in the winter.....other than that, I had no problems...I felt Xeloda was a breeze!
__________________
"Be kinder than necessary, for everyone you meet is fighting some kind of battle."
Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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07-06-2008, 04:13 PM
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#7
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Senior Member
Join Date: Feb 2006
Posts: 1,014
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I had really bad hand/foot syndrome with Xeloda. My feet looked like I had walked on hot coal, my hands were blistered too. This can be helped by adjusting the dose, I had to take some days. It didn't start happening to me till about the second round of treatments, it took time to build in my system. It's a great drug though, it helped with my mets..sherryg683
__________________
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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07-07-2008, 04:35 PM
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#8
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Senior Member
Join Date: Feb 2007
Location: Nova Scotia, Canada
Posts: 40
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thanks
This drug has given me no unbearable side effects yet, but I have had nausea which I control with more drugs, this morning when I got up my feet felt like they were on fire, and I have developed a rash on my chest. My onc thinks the rash may have come from a reaction to the sun as it was nice on the weekend and we just lazed around the pool all day, but I did wear sun screen and didn't sit in the direct sun. I am hoping the feet cool down, I have been moisturizing them alot today and tonight they feel a bit better. I am just hoping that this new combo puts these pesty mets back to where they started and hoping the herceptin makes them stay there. Thanks to all you great ladies and gents for all the great info and support you give. I appreciate it so much.
__________________
Intial Dx Sept3,2002, age 39
Masct/ Sentinel Node Biopsy Sept 11,2002 node negative
ER/PR- Her2+++, grade 3
Started AC Chemo Nov 2002, 4 rds
2003 NED
May 2004 reconstuction, saline and later silicone implant
Aug 2006 Dx recurrence, lymph nodes chest/lungs/sternum
Dec 2006 Herceptin q three weeks
May 2007 bone mets to sternum
June 2007 aredia for bone mets
June 2007 radiation to sternum X 5
June 2008 slow progression of lung met, all other mets NED, continue Herceptin, Aredia, add Xeloda
July 08 Stopped Xeloda, severe side effects from the drug, but it did a fantastic job after only 12 days at least 50% reduction
Feb 09 Started Navelbine with herceptin, slight progression in lungs.
July 09 - Nov 09 had a Navelbine holiday...
Nov 09 back to Navelbine, Herception
Feb 10, lungs have improved but 4 small lesions on liver, started Taxol, Herceptin....
Taxol not the magic drug for me
Continuing Herceptin,Aredia,and adding Xeloda once again..reduced dose
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