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Old 03-21-2007, 09:26 AM   #1
Grace
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Herceptin, bad dose!

Yesterday, I had my six-month infusion of herceptin. Other than when I was on chemo it's been very easy (minor issues, like cough, runny nose, nails, vision) but I always felt fine during and after. When I returned home yesterday I was incredibly tired, all day, and then last night I had a terrible time with diarreha (all night). I was also nauseous and still am. Twenty four hours later I still feel terrible. Has this happened to any of you out there? Could they have given me a higher dose or something in the beginning that is different from the past. If anyone has had this happened, I'd appreciate hearing. And did it happen again, or perhaps get worse?

Thanks.
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Old 03-21-2007, 10:40 AM   #2
janet11
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I've never had anything like that happen. If it was me, i'd call my onc.
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Janet in Rowlett Texas

Dx July 2006 IDC 1.8cm, ER-/PR- HER2+ (FISH 7), KI67 High (60%) grade 3, TOPO II neg
Aug2006: lumpectomy, SNB (4 nodes neg), Stage 1
Jan 2007:
Finished 6 cycles of TCH (Taxotere, Carboplatin, Her ceptin). Then Herceptin every 3 weeks.
Feb 2007: Completed Radiation
May 2007: Stopped Herceptin due to low LVEF (49%)
July 2007: LVEF now 44% -- starting Coreg
May 2008: Heart NORMAL! Yippee.
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Old 03-21-2007, 11:03 AM   #3
StephN
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Talking

Grace, You may have a touch of the flu. But certainly report it.

I recall someone here a while back with a similar question and she was much better within 2 days. And hasn't has that complaint again that I have noticed.
Sure hope that is all it is. There is a thread on this board that goes into detail on how herceptin is kept in powder form and then mixed separately for each patient upon their arrival to the infusion area. Difficult to actually get a bad dose.

Hope you are feeling better by now.
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"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 03-21-2007, 03:59 PM   #4
rinaina
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Grace, I Felt Exactly Like You Did The Last Two Herceptin Treatments. Get Them On A Thursday Every 3 Weeks And The Last Two Times I Felt Like I Had The Flu But It Wasn't. Lasted The Entire Weekend But Then By Monday, Much Better.
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~Rina~
Dx:3/06 had a lumpectomy April 19, 2006
Her2+ er/pr- Stage I Grade 3 tumor size 1.4 cm, node negative
AC 4 dense doses
34 radiation treatments including booster doses
receiving herceptin every 3 weeks since late August 2006 for 12 months
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Old 03-21-2007, 08:09 PM   #5
hutchibk
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I think I read on another thread about asking them to reconstitute the Herceptin with saline - after someone had a bad reaction... I will look for it.
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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 03-21-2007, 08:29 PM   #6
Lolly
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Grace, I hope it's nothing more than a touch of the flu, although flu is no fun. I usually just have the tiredness and achey joints, sniffles and sometimes a slight headache when I have Herceptin.
But as Steph says, best to call your onc and report.

<3 Lolly
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Sept.'99 - Dx.Stage IIIB, IDC ER/PR-, HER2+++ by IHC, confirmed '04 by FISH. Left MRM, AC x's 4, Taxol x's 4, 33 Rads, finishing Tx May 2000. Jan.'01 - local/regional recurrence, Stage IV. Herceptin/Navelbine weekly till NED August 2001, then maintenance Herceptin. Right Mast. April 2002. Local/Regional recurrence April '04, Herceptin plus/minus chemo until May '07. Gemzar added from Feb.'07-April '07; Tykerb/Abraxane until August '07, back on Herceptin plus Taxotere and Xeloda Sept. '07. Stopped T/X Nov. '07, stopped Herceptin Dec. '07, started Avastin/Taxol/Carboplatin Dec. '07. Progression in chest skin, stopped TAC March '03, started radiation.

Herceptin has served as the "Backbone" of my treatment strategy for over 6 years, giving me great quality of life. In 2005, I was privileged to participate in the University of Washington/Seattle HER2 Vaccine Trial.
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Old 03-21-2007, 10:58 PM   #7
Grace
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Thanks all,

I did call my usual chemotherapy nurse (she was off yesterday) and she checked my file--same dose as before, nothing different, other than my reaction. I slept the entire day, ate nothing until late evening, and now I'm feeling better. No doubt it was a reaction to the herceptin and I've just been lucky up until now. How nice, though, to have all you folks to complaint to. Much appreciated.
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