| Herceptin / Tykerb Share your experiences or ask questions about Herceptin or Tykerb |
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02-08-2008, 09:53 AM
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#1
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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Interesting info about Xeloda
Some here may already know this, but I just learned it recently and thought I should share...
A shortage of a critical enzyme for the metabolism of Xeloda (capcetibine) called dihydropyrimidine dehydrogenase can cause someone who is taking it to experience the most severe side effects from it.
I have read that a patient should actually not be taking Xeloda if they lack this enzyme, and it is actually in the paperwork that comes with Xeloda...
Just wanted to share as this is something to keep in mind if you have had severe side effects while on it, and/or something to bring up to your doctor if it is being considered as a treatment for you.
I have had only very mild (if any) side effects, so I can assume that I have plenty of the necessary enzyme, thank goodness!
__________________
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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02-08-2008, 05:22 PM
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#2
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Senior Member
Join Date: Sep 2006
Location: East Central Illinois
Posts: 89
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Brenda, that is interesting since I have lots of side effects. (I envy you having so few side effects!) Is there anyway to make up a shortage of dihydropyrimidine dehydrogenase? Could that be the reason the Tykerb causes lots of problems for some and almost none for others? I will ask my onc about it. My 2nd week on the X is the hardest, and even for several days after I go off it. Thanks for the info.
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02-08-2008, 07:19 PM
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#3
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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I wish I knew more about it - I asked my doc about it today, and he says that he doesn't necessarily believe that a patient with a shortage of the enzyme should avoid Xeloda, but it is good to know to prepare for more severe side effects. I don't even know how they test for it... and I don't know about making up for the shortage. Let me know what your doc says!
__________________
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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02-09-2008, 07:59 AM
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#4
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Senior Member
Join Date: Dec 2005
Location: Ontario, Canada
Posts: 48
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I'm just finishing round two of Xeloda. I have the same fatique side effect as other chemo drugs, and runny eye, but otherwise I seem to be tolerating it well. Tykerb is not available in Canada yet, and I decided not to spend $3600. a month on a drug. (I would if I had the available money, but will not borrow) I am hoping our FDA will pass it soon. Did you read the news yesterday that a rash proves the drug is working? I have no rash and I don't want want. Brenda, I'm on my way to San Antonio for a holiday soon. Yahooo!
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03-03-2008, 05:44 PM
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#5
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Senior Member
Join Date: Apr 2007
Location: Asheville, North Carolina
Posts: 31
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My oncologist said if you lacked the enzyme the diarrhea would be so bad you could end up in the hospital. She said you would know within a week of taking the drug. So side effects, even if think severe, may not be related to lack of enzyme.
__________________
Koolmom
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03-04-2008, 05:27 PM
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#6
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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I saw my oncologist yesterday and started my Tykerb/Xeloda today. I did ask her about testing me for the enzyme. Her reply was that she has only ever had to test one person. It seems that almost everyone has the enzyme and will have no problems I was told that if I have problems then we will get the test.
__________________
Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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03-09-2008, 10:14 AM
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#7
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Senior Member
Join Date: Sep 2001
Location: California's Gold Country
Posts: 404
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This thread is very interesting to me, in that the Xeloda almost did me in back in 2003. A little over a week into my therapy, while walking to the bathroom, I just blacked out. I fell and hit my head pretty hard. Ouch!
Anyway we called my Doc and he said to immediately quit taking the X. Within a few days of stopping the X, I developed a fever and pretty bad diarrhea. Being the brilliant one that I am, I just figured I was coming down with something and didn't call the doc right away. By the time I realized I was really sick and got to the hospital, it took everything they had just to save me. I had transfusions of blood and plasma and was on 4 different "big gun" antibiotics to try and get the infection under control. I was there for about 8 days and lost 15 pounds.
My doctor said that I most likely, bacteria from my intestines got into my bloodstream because of how ravaged my GI tract was, and that's why I was so sick, not to mention the Xeloda had totally wiped out my blood counts. It was like having the high dose chemo all over again, without the stem cell transplant.
The doctor later said that for some reason I wasn't able to metabolize the Xeloda and it just kept building up in my system to very toxic levels. He also said that he would never give me Xeloda again. I asked him if we might just use a much lower dose if I were to ever need chemo options again and he said he just didn't feel good about it. He never mentioned anything about me lacking an enzyme, so I doubt he knew about it.
So although my experience with Xeloda was not good, I often wonder if it is part of the reason I have been NED( in my body) for a good while . I'm always trying to find the good in things, and so I figured since the Xeloda almost killed me, maybe it scared those cancer cells away too!
Hopefully they will learn more about this enzyme and maybe figure a way around not having it for those women and men who may need Xeloda.
Just my musings on a very interesting subject!
Kim
__________________
Diag. Feb 1997 4.5cm IDC <10%ER+, PR-. 5 out of 36 nodes +. Mastectomy followed by 3 rounds Adriamycin/Cytoxin.
5/1997 Hi Dose Chemo w/ Stem cell rescue. Spent 4 weeks in isolation ward. Then 6 weeks radiation.
9/2001 widespread mets to liver. 8 mos Taxotere/Herceptin brought me almost to NED. Stop Taxotere & add Femara .
11/2002 liver resection to remove spot that turned out to be necrosis. Officially NED!
7/2003 Tumor markers rising add Xeloda Disastrous reaction, 8 days hospital, but tumor markers came back to normal!
June -Dec 2004 UW Vaccine Trial.
7/2005 MRI single 11mm brain met
8/2005 Gamma Knife.
Brain MRI @3 months NED!
2006-2011 brain/body still NED
8/04/11 Taking Herceptin break, will monitor with tumor markers.
6/20/12 Tumor markers begin to rise. CA15-3 is 31.3 and Her2 Serum is at 17.1 Decide to repeat in one month.
7/23/12 CA15-3 now 49.3
Her2 Serum 26.8
8/6/12 Back on Herceptin
CA15-3 now 76
Her2 Serum now 49
11/7/12 Add weekly Taxotere for 4 cycles
2/2013 Stopped Taxotere added Perjeta. MRI shows approx. 50% reduction liver mets. CA15-3 still elevated @ 55. Will continue on just Herceptin & Perjeta.
November 2014 Continuing on Herceptin, Perjeta, and
Femara indefinitely. Guess I'm NED again, but watching those tumor markers carefully!
Dec. 2015 PET scan reveals mass in perirectal area of abdomen.biopsy confirms. Still Her2+, but no longer ER+. Bye bye Femara
Jan 2016 Begin Kadcyla
March 2016 PET scan shows tumor now barely visible, still NED everywhere else.
2016/2017 continue Kadcyla
November 2017 brain MRI reveals small focus of T2 hyperintensity with possible 4mm enhancing nodule. Short term follow up MRI suggested. Stay tuned...
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