| Herceptin / Tykerb Share your experiences or ask questions about Herceptin or Tykerb |
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09-30-2006, 07:47 AM
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#1
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Senior Member
Join Date: Feb 2006
Location: Canada
Posts: 40
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Herceptin side-effects...Take control!
Hi Ladies,
Haven't been here in a while...summer was a nice distraction.
I am 4th stage( Mets to lungs), 4 time survivor in 6 years. Bilaterals and reconstruction. Her2 pos...estr. neg. Grade 3.
Aug 2005 started Navelbine and Her2 and continued on Her2 ( Herceptin) indefinately. No real side effects except for fingers, and nails...dry, brittle, skin cracking etc. I had other side effects before I took myself off the steroids ( who needs it?)... I sure don't!
The steroids are given hand- in- hand with most Herceptin/ chemo treatments for nausea. Well I was not nauseated with Herceptin, so I asked them not to give it to me.
Bye -Bye to the other side-effects... no more bloating, weight-gain, mood swings, hot flashes, joint pain...etc etc..... it was all from the steroids!!
So now I only have the dry, sore fingertips, and dry hair, my fingernails rip and tear easily, and sometimes cramping in my calves. They suggest if I am ever nauseated ( which I am not), to use Gravol...so one time on a long car ride ( directly after treatment) I used NON-DROWSY ( GINGERROOT) Gravol. It worked.
If those are now my only side-effects...I can live with that.
Those of you on straight Herceptin might want to ask your chemo nurses or onc. about giving up the steroids... just try it.
__________________
Lucky4x
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09-30-2006, 07:50 AM
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#2
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Senior Member
Join Date: Feb 2006
Location: Canada
Posts: 40
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Oops... ps...
The runny nose is gone too! It was also from the Decadron ( steroids).
The blurry vision started with 1st rounds of chemo way back in 2000... I think for me its just old age (49).
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Lucky4x
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09-30-2006, 07:52 AM
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#3
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Senior Member
Join Date: Feb 2006
Location: Canada
Posts: 40
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Sooooooooo sorry... one more PS............
Herceptin treatments... have been on straight Herceptin since Jan 2006. I dont ever want to go off it, heart is good ... AND LUNGS ARE CLEAR!!
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Lucky4x
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09-30-2006, 11:55 AM
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#4
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Senior Member
Join Date: Oct 2005
Posts: 823
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LuckyX you wrote<<Those of you on straight Herceptin might want to ask your chemo nurses or onc. about giving up the steroids... just try it.<<<
Never once did I ever have any steriods while on Herceptin. This is one drug they say doesn't need a steriod.
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Vicki
Texas
Biopsy Dx'd 3-23-05 Age 48
MRM 4-5-05 w/ 2 tumor's 5cm, and 6 cm (right side)
IDC (poorly differentiated infiltrating ductual carcinoma)
5+/16 nodes
Stage III A
Grade 3
ER/PR-, Her2/neu ++
Ki67 78%
Begin Chemo 5-2-05 4XAC Dose Dense , 4X Abraxane Dose Dense (ended August 05)
28 Rad's ended October 13 2005
Started Herceptin Weekly August 2005 for one year
Had a Simple mastectomy left side after Mamo showed incresed micro-calcifications. Jan. 17 2006.
Brain MRI Feb.2006--All Clear
August 28, 2006 Last Weekly Herceptin.
October 2006--Colonoscopy, 6 Polyp's removed--all B9
PET Scan July 2007
Abdominal MRI Oct. 2007---2 Right Kidney Cysts
Core Biopsy-- Lump on Scar Line 1-10-08---B9
Brain MRI 6-2008--All Clear
PET/CT Scan 6-2008
Sept. 8 2008, 4CM area removed from mastectomy scar line. Proved to be B9.
PET/CT Scan-- July 2009 --All clear
August 17,2009 ---Had Port Removed
6 Years NED -- April 5,2011
DX'd with Melanoma left arm 10-10-2011
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09-30-2006, 01:50 PM
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#5
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Senior Member
Join Date: Feb 2006
Location: Canada
Posts: 40
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Hi Vicky
Hi.
I was told at my clinic that its "routine" to give steroids before/during the Herceptin... but that might be just here in Canada? I am not sure... but would be interested to find out because you are soooo right... you don't need it with Herceptin.
Thanks for responding.
Lucky
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Lucky4x
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09-30-2006, 04:34 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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No steroids here
Vicki,
I am on straight Herceptin -- no steroids -- no nothing except Herceptin. Only time I had steroids was as a pre-med with the Taxatore.
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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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10-01-2006, 01:35 PM
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#7
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Member
Join Date: Aug 2006
Location: Toronto, Ontario
Posts: 21
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I went to see an allergist who specializes in desensitization to get people through chemo. He had not seen an herceptin allergy before but had heard of someone at Harvard who might have had some experience. Roche, the distributor for herceptin in Canada, have also shared some info. with my oncologist (2 cases) and hopefully this will give some insight into a strategy to be able to put me back on herceptin. So far lapatanib doesn't appear to be an option, even on compassionate grounds.
It is now over three weeks since Taxol and I haven't had herceptin since July 28th and I am still reacting. I was in Emergency last Friday in order to get the reaction under control. I am now on prednisone and benadry every 4 hours. I want to get off the prednisone as soon as possible but when I stopped taking it (after 5 days) the reaction came back by the 3rd day. I was really hoping that things would be a bit easier during the break between chemotherapy and radiation. Sigh...
Walked with my family and friends in a fundraiser for breast cancer reseach today. It was really good to be part of something positive and hopeful.
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Carina
Toronto, Canada
DX: 12Dec05, Stage IIIa, invasive ductal carcinoma, extra-nodal extension, ER/PR+, HER-2neu 3+, FISH: 7.8
Chemo: AC + T completed 8Sept06, and Herceptin started started 7Jul06 (Herceptin temp. stopped due to allergy)
Hormonal Treatment: 9Oct06 (Arimadex)
Radiation: To start 10Oct06 (5 weeks)
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10-01-2006, 03:14 PM
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#8
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Senior Member
Join Date: Feb 2006
Location: Canada
Posts: 40
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Hi there Carina.
Congrats on the walk.
Yes the sun came out for our walk in Burlington too.... so beautiful with all the changing leaves! I am so sorry you are having these reactions.... it must be horrible for you!
Please keep us informed as to what they find out about your reaction I would be very interested to know what triggered it.
Again, congratulations on THE RUN FOR THE CURE today!
Lucky
__________________
Lucky4x
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