Herceptin / Tykerb Share your experiences or ask questions about Herceptin or Tykerb |
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09-26-2012, 06:19 PM
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#1
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Senior Member
Join Date: Sep 2012
Posts: 29
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Xeloda and Tykerb
About two weeks ago, I found that Herceptin was no longer keeping my mets at bay. I had been getting Herceptin weekly for over three years. My oncologist switched me to Xeloda and Tykerb. After taking Xeloda for a week, I started experiencing severe stomach cramps and had to stop taking it. Today, I restarted Tykerb, and I think the plan is to restart Xeloda at a lower dose at the start of the 21 day cycle. Can anyone give me some tips on dealing with the side effects and what they have experienced on these two meds. Thanks.
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09-27-2012, 10:52 AM
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#2
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Senior Member
Join Date: Apr 2011
Posts: 403
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Re: Xeloda and Tykerb
Hi! I have been on tykerb and xeloda for almost 6 months now and have tolerated both drugs well except for a few nausea and diahrrea and cracked skin but all managable. Tykerb has to be taken on an empty stomach or 2 hours from your last meal. I take 3 xelodas after breakfast, 3 after dinner and 5 tykerb at bedtime. For cracked skin i used bag balm 2 times a day/ for diahrra i dont take any medication because they don't happen often. But i think you might need to avoid certain food such as grapefruit while on tykerb due to drug reaction. Many others here have used those drugs and will give you more advice. Take care !
__________________
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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09-28-2012, 08:42 PM
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#3
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Senior Member
Join Date: Mar 2012
Location: New York, new york
Posts: 73
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Re: Xeloda and Tykerb
I have been on tykerb, herceptin since may...have rash on my chest...and just recently lost more than 50percent of my hair...dermatologist gave me a hydrocortisone foam for my scalp pain....diarrhea is tolerable by managing diet...
__________________
Eileen's history her2+, er+,pr-, Pk13 mutation
Feb 2017. Herceptin and perjeta ..still ned
Oct 2015 dendritic cell vaccine university of Pennsylvania..6 weekly injections...boosters every 3 months
July 2015 stopped weekly taxol (2.5 years of weekly taxol) still on herceptin perjeta every 3 weeks..still ned
Jun 2014 liver ablation of 1 liver tumor..now ned
Jun 28, 2013 ca15-3 24, cea 3.8... Pet scan showed 2 liver tumors with intensity of 2.7 and 2.5 (11/13 intensity was 8.0)
Jan 2013 herceptin, perjeta every 3weeks, taxol weekly
Jan 2013 MRI showed 3 liver tumors doubled in size ca-15 is 55 end of month 71, cea 7
Dec 2012. Pet scan showed single liver nodule, having MRI liver on dec18th...MRI liver 3tumors... on herceptin, tykerb , fulvestrant ca-15-3 is 42
Sept 2012 ca-15 went from 85 to 35, pet scan showed decrease
May 2012 herceptin every 3 weeks, 1500 tykerb daily (6pills) and fulvestrant every 3 wks
May 2012 herceptin stopped working ca-15 is 85
Sept 2011 started herceptin every 3 wks and femara daily..mets to liver. Bone and lymph nodes
2011 liver mets...all samples from 2001 and 2010 reviewed...her2 positive, fish 5.4. Er positive, prog neg. Stage 4 breast ca...never was lung cancer
2010 16 weeks of chemotherapy for lung cancer (incorrect). Carboplatin and vinalbine...was actually breast ca mets
2010 misdiagnosed with lung cancer ..2cm tumor removed..lower right lobe removed
2001-2006 tamoxifen
2001. Ductal ca. Rt mastectomy
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10-03-2012, 11:13 PM
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#4
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Senior Member
Join Date: Mar 2012
Location: Alabama
Posts: 121
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Re: Xeloda and Tykerb
Been of and on for a month, 2 attempts. Due to the side effects my dr stopped both twice do I could get control of the intense, constant diarrhea and nausea/vomiting. Also this round I've got the hand/foot stuff on my feet and bleeding sores in my mouth and bloody noses. Oh yeah, the hem aroids from living on toilet.
When I restart I'll be on 3 Tykerb/day and full dose of Xeloda (6 pills) for one week then take week break from Xeloda.
This week has been so bad I told my onc to forget treatment if this is what I have to go thru-now I know what quality of life means and throwing up, shitting fireballs, sores on feet that feel like I'm walking on hot coals, mouth sores, etc, no sleep unless on bathroom floor isn't how I want to live.
This is what we've tried all at the same time. I'm just a druggy.
Nausea::
Compasine since I'm allergic to phenargren
Zofran
Some patches for nausea waiting for PA for insurance
Kytrel injections
Diarhea::
Imodium liquid and gel tabs
Lomotil
A shot the doc gave me that lasts a month for diarhea, very expensive (my ins covered it)
Also::
a half vit c a day to help w/ sores
Mix of bake soda and warm salt water
Udder lotion
Sally Hanson hards as acrylics (great!)
****Bliss spa goves and socks are The BOMB! Get em at
Humidifier to help with being so dry from all these drugs
Also, 2nd time with this combo, my hair and nails have started growing like crazy for first time in 8 mon.
Good luck! This is the pits! Get some depends to have on hand.
__________________
Vicki
Lord, give me the comfort of Your embrace and acceptance of Your will.
3/11: DX: IDC, HER2++, ER/PR neg, stage 4, mets to liver. Primary tumor: grade 3; 11 cm. 2nd smaller tumor: ~2.5cm. Multiple affected nodes, 1 spot on liver. 6 rounds TCH prior to bmx.
7/11: Nothing left except Primary breast tumor now 1.5cm.
8/11: BMX, 17/17 nodes clear. No post-op chemo or radiation indicated. NED!
10/11: NED! Continue Herceptin indef.
2/12: Reoccurence of liver mets; both lobes. Tykerb added to Herceptin.
5/12: Progression of liver mets. Stop Tykerb, start Abraxane & Herceptin weekly.
8/12: Progression in liver and lymph nodes around liver and right kidney. Herceptin not working anymore! Stop Abraxane and Herceptin. Start Tykerb and Xeloda.
10/12: Severe side effects. 3 weeks break from everything.
12/12: It's working! All tumors gone except 2 (from 20+) Continue Tykerb and Xeloda. Brain and spine MRIs clear.
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10-04-2012, 12:22 PM
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#5
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Senior Member
Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 389
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Re: Xeloda and Tykerb
Put Henna/lemon juice paste on your feet. Best to make and let set, warm before putting on with foam paint brush. Udder cream and Bag Balm with cloth gloves. Vitamin K cream for the areas these don't work on.
Diet for the nausea. Timing for the dosage is important.
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10-05-2012, 06:39 PM
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#6
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Senior Member
Join Date: Mar 2012
Location: Alabama
Posts: 121
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Re: Xeloda and Tykerb
I really, really recommend the Bliss gloves and socks from Ulta.
__________________
Vicki
Lord, give me the comfort of Your embrace and acceptance of Your will.
3/11: DX: IDC, HER2++, ER/PR neg, stage 4, mets to liver. Primary tumor: grade 3; 11 cm. 2nd smaller tumor: ~2.5cm. Multiple affected nodes, 1 spot on liver. 6 rounds TCH prior to bmx.
7/11: Nothing left except Primary breast tumor now 1.5cm.
8/11: BMX, 17/17 nodes clear. No post-op chemo or radiation indicated. NED!
10/11: NED! Continue Herceptin indef.
2/12: Reoccurence of liver mets; both lobes. Tykerb added to Herceptin.
5/12: Progression of liver mets. Stop Tykerb, start Abraxane & Herceptin weekly.
8/12: Progression in liver and lymph nodes around liver and right kidney. Herceptin not working anymore! Stop Abraxane and Herceptin. Start Tykerb and Xeloda.
10/12: Severe side effects. 3 weeks break from everything.
12/12: It's working! All tumors gone except 2 (from 20+) Continue Tykerb and Xeloda. Brain and spine MRIs clear.
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11-27-2012, 09:19 AM
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#7
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Senior Member
Join Date: Aug 2006
Location: Pennsylvania
Posts: 1,080
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Grapefruit and anti-cancer drugs
If some anti-cancer drugs are taken with grapefruit juice, the potential cost savings could be about 80%, since the drugs interact with CYP3A4. The powerful compounds in the grapefruit called furanocoumarins obliterate the CYP3A4 enzyme in the intestines and liver. The result is that more of the drug gets into the bloodstream. Individuals have different levels of CYP3A4 that breaks down drugs before they even have the chance to get into the bloodstream. Patients with very active CYP3A4 get lower amounts of drugs into their systems than those with low levels of the enzyme. Some patients may have naturally low levels of the CYP3A4 enzyme and thus wouldn't need it. Certain drugs have a hard time reaching optimal blood levels at prescribed doses. Some doctors are interested in intentionally boosting the effects with grapefruit. In addition to Tykerb, Zytiga (abiraterone acetate) is also better absorbed with food, though the label says empty stomach. Cell-based assayists have been able to reverse Zytiga resistance by having patients take it with a fatty meal.
http://jco.ascopubs.org/content/25/23/3397.full.pdf
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