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Old 12-12-2007, 05:16 PM   #21
GuitarMom
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Hermiracles,

I'm glad to hear your oncologist feels you can give it another try. With all the benefits of this drug, it would be a shame for you not to get it. Best of luck!!!

DeAnn
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Old 12-14-2007, 07:26 PM   #22
Bill
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Hello Hermiracles! I can imagine how trying that must have been for you and your husband. Thank God it wasn't worse. My wife never had a reaction to Herceptin, but when she began her first treatment, she was on a clinical trial of Lapatinib (Tykerb), Taxol, and Herceptin. At each infusion of the Taxol, they gave her Decadron, Aloxi, and the Benadryl. We discovered early on that if they gave her the Benadryl at the standard rate (10-15 minutes, I think) she got really antsy, so they slowed it to 30 minutes and then she dozed mostly. Sometimes they gave her Ativan as well. At that time she had a "temperamental" port and if she moved very much, it would quit feeding. She had liver mets, but also 2 mets on her spine, and they gave her Zometa once a month as a bone srengthener. I'm not in the medical field, but I was wondering if maybe that could help you as well. I don't know the pros and cons of Zometa, but it made Nikki feel like she had the flu for a few days. Also, at our treatment center, they would give premeds in the same order for everyone, Benadryl, Aloxi, Decadron. I noticed some people were getting sick within 30 minutes of infusion,(some I think were new and understandably scared), so I suggested to the nurses that sometimes Aloxi should be given first in those cases and it seemed to help. Don't be reluctant to ask alot of questions and sometimes the chemo. nurses, God bless them all, do tend to get into the same routine on premeds. Sometimes changing the order may help. Stay strong, Bill
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Old 12-15-2007, 01:45 AM   #23
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reaction to first dose of herceptin

I too am in Australia (Queensland) and had that sort of reaction to my first dose 15 months ago. I had fevers chills and rigors and couldn't even speak as I would bite my tongue when I tried to. My back (where the secondaries were) ached, my temperature, BP, pulse rate, oxygen sats all fluctuated wildly, and I was very short of breath, so I was put on Oxygen and given all the premeds. Things settled over the course of 40-50 minutes and I have had no trouble since. My oncologist told me it was good thing..... it was a cytokine reaction to dead tissue as the herceptin killed off all the tumour cells. So I took solace in the knowledge that I was a "good responder" and I haven't looked back since.

Hope this helps

Vicki
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Old 12-19-2007, 05:20 AM   #24
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Wow - thanks folks for all your great information and support! That is so helpful
I am seeing my local Onc tomorrow to discuss the next step in relation to Herceptin and Taxotere ( I think) - will let yous know how I go.

Feeling a lot more hopeful as I was worried they might say no to Herceptin because of the reaction - but looks like I should still be able to have it with the right pre-med etc.

Thanks!
Blessings
Hermiracles
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2003 L/DCIS –> LWE: High G./Comedo - 6 nodes clear 6 wks Rx
04/07 2 miracles born ~ very grateful
06/07 Susp areas L/b
09/07 Stage 2 bilat. mastectomy R/ b. clear extens DCIS/IDC Paget’s 8 nodes clear ER(<5%) HER2+++ CT clear
11/07 Portacath - FEC
15/11/07 Stage 4 Emerg op - hip replacemt #NOF bone mets H/Taxotere
12/07 Rx to 'spots' on spine/R/hip/femur 3wkly H
2008 H+T mets to rib/sternum? Aredia CT clear! Cont. H + Aredia 07/08 1 wk Palliative Care - mets to lungs + ?1 to brain
09/08 Stop H complete Epirubicin 1wk PC new brain mets
10/08 2wks WBR 1wk PC 22/10/08 Tykerb/Xeloda 12/08 6 CEREBRAL METS COMPLETELY GONE! Rib mets down to <1cm.
01/09 Tumour markers normal! Rx to L/arm
03/09 LUNGS CLEAR (ALL NODULES GONE!), brain clear, liver clear. Bones stable! ~ THANK YOU GOD
07/09 Repeat CT Scan ~ ALL organs clear apart from bones which remain stable. I walk in gratitude.
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Old 01-09-2008, 11:12 PM
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Old 01-09-2008, 11:13 PM   #25
Crystal
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Herceptin

Thank you for posting all this information. I will be starting Herceptin after my last chemo treatment tomorrow. Yay me! I had trouble with my chemo at first and have had to change meds and up steriods to deal with the side effects. I hope I don't have to go through all that again with the Herceptin.
Glad to hear you will more than likely be able to continue. I look forward to hearing what happens. God bless you.
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Old 01-09-2008, 11:36 PM   #26
hermiracles
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Hi Crystal - just to let you know I did go ahead with the Herceptin again and all went well with appropriate pre-meds and a slower infusion.

Hope the Herceptin goes well for you too.
Blessings
Hermiracles
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2003 L/DCIS –> LWE: High G./Comedo - 6 nodes clear 6 wks Rx
04/07 2 miracles born ~ very grateful
06/07 Susp areas L/b
09/07 Stage 2 bilat. mastectomy R/ b. clear extens DCIS/IDC Paget’s 8 nodes clear ER(<5%) HER2+++ CT clear
11/07 Portacath - FEC
15/11/07 Stage 4 Emerg op - hip replacemt #NOF bone mets H/Taxotere
12/07 Rx to 'spots' on spine/R/hip/femur 3wkly H
2008 H+T mets to rib/sternum? Aredia CT clear! Cont. H + Aredia 07/08 1 wk Palliative Care - mets to lungs + ?1 to brain
09/08 Stop H complete Epirubicin 1wk PC new brain mets
10/08 2wks WBR 1wk PC 22/10/08 Tykerb/Xeloda 12/08 6 CEREBRAL METS COMPLETELY GONE! Rib mets down to <1cm.
01/09 Tumour markers normal! Rx to L/arm
03/09 LUNGS CLEAR (ALL NODULES GONE!), brain clear, liver clear. Bones stable! ~ THANK YOU GOD
07/09 Repeat CT Scan ~ ALL organs clear apart from bones which remain stable. I walk in gratitude.
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Old 01-10-2008, 08:16 AM   #27
lilyecuadorian
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great Hermiracles hope the next herceptin is less reaction ....then this one ....but as long you can get it that is all matters ...
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Diag April/06 5 months after give birth my son Max
stage IV mets on liver (5 tumors) 38 year old,
her2+++ and ER+PR+ from32 nodes 4 positives
mastectomy right breast chemo before surgery herceptin/carboplatin/taxotere ,clear and surgery have radiation 20, `& then herceptin and tamoxifen
NED until Aug/07 body only then 'n June 04-06-07 .1 lesion of 1.6 cm on cerebellum ...novalis ,open sugery
5m.m brain met again novalis, 4mm.In the liver. Waiting 2 months now 3 tumors enroll on T-MCC trial start first infusion Nov 5/07 at Dec 17 scan show one tumor despair the 2nd and 3th diminish Doc said great results until March/08 ct scan show progression
03-05-08 start tykerb & xeloda
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Old 01-17-2008, 05:43 AM   #28
Bubble
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Hi,
Just wanted to add that I too had a similar experience.
I am on Herceptin + Navelbine. Theyhad not yet started any of these - at the start of the day, they were giving me pre chemo (saline with anti nausea etc). The infusion was slow. The nurse came and increased the flow. Within 5 minutes - I statred shivering unconrollably - the rigors- entire bodywas xshaking and then my temp shot up to 103 degress F.
My oncologist suspected that my port was infected and put me on serious antibiotics and I have been fine since. I do think that the speed of the infusion had something to do with the problem.
Hope you are doing fine now.
Love
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Old 12-26-2009, 12:32 PM   #29
Ling Abel
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Herceptin Severe allergic reaction

I was lucky to find this forum. I had the most horrible reaction to my first dose of Herceptin. I ended up in the Emergency room of my local hospital. The constant shaking and fever, high heart beat terrified me and my husband. They gave me Benydryl and fluids to rehydrate me and I feel much better today.
I had read through all your posts and am now better armed to tackle this question with my doctor. While I'm sure the doctor knows how to deal with severe reactions it will do no harm to have her understand that I too am now informed and have a few suggestions of my own
Thank you everyone on this board for posting and giving us Noobi's a little direction and support.
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Old 12-31-2009, 12:29 AM   #30
SoCalGal
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Re: Severe reaction to 1st dose of Herceptin

I think it is very possible and likely that you will do just fine with benedryl pre-med and maybe the steroid, too. FOR SURE they should infuse very slowly. Even now, after years, I have Herceptin over an hour. Most people have theirs in half-hour.

Second story - several years ago, after (4) taxotere treatments with no problems, right in the middle of treatment #5 I suddenly felt like I was going to die - pass out, couldn't breathe, and could only quickly yell for help. They shut my drip and I recovered quickly. They gave me some benedryl and then the doc came in. "I want you to finish your drip today". It was one of the hardest things I ever had to do, let them turn that drip back on. But they ran it very slowly and I was fine.

Third thing - you are like me - the ever-ready bunny. We are crazy warrior-women. You are not going anywhere. Forget about dying. You are going to raise those kids. I promise.

Blessings back to you!
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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