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Old 12-31-2011, 12:44 AM   #1
KsGal
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Herceptin side effects?

Hi everyone. Im sorry I am so full of questions, but this is all so new to me. My doctor has scheduled me for a "loading dose" of herceptin next Wednesday morning, and I have to be at work at 2 that afternoon. He seems to think that I will be fine doing that. I, however, would like to ask all of you if you have any side effects from Herceptin the day of treatment, and if there is anything I should do to prepare for it. Do I need to ask for any antinausea medication or anything?
Also, I told the doctor I was having some little mini panic attacks, and he gave me a prescription for Ativan. I thought this was to make you sleep? Is this really something I want to take when I am at work, etc? Thank you all for putting up with me and my incessant thread posting.
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Old 12-31-2011, 02:49 AM   #2
kykeon22
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Re: Herceptin side effects?

Hi KsGal,

I'm sorry you have to go through all this.
My mum got her first IV Hercepting almost four years ago. The very first IV gets her a fever which lasted just one day. She was shivering and her temperature was about 38 Celsius. And she slept all day and all night. The onc said that it's pretty much common to have fever after the first infusion. The following IV were uneventful, she felt well and was able to do everything. So my advice is to take the day off at least for the first IV, maybe even for the second one. See how do you cope with it and then take a decision about what you are able to do or not after herceptin IV.

Wish everything will go smoothly for you.

Kykeon
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She has been dignosed in February 2008 BC state IV, left breast multiple nodes size 5 cm, mets lungs and liver. Er+ Pr+ Her neu +++.
3/2008 - 10/2010 Herceptin + Aramidex NED
10/2010 recurrence lung met, pleural effusion, toracentesis
11/2010- Tyverb + Navalbine NED
08/2011 CA-15-3 = 90 scan
08/2011 Scan revealed reccurrence lung met, tiny metastasis on the pleura and pleural effusion.
4 pills tyverb, mytoxantrone once ever three weeks, and Aromasin.
Tykerb and taxol, sever allergic reaction
Tykerb taxotere
Herceptin, perjeta, gemcitabina
C- diff, bad diarrea
Halevan and tamoxifen, tm down from 1200 to 130

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Old 12-31-2011, 07:20 AM   #3
karen z
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Re: Herceptin side effects?

Hi. I did not have any problems at all. Everyone is different. You can always take off work and see how you do.
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Old 12-31-2011, 09:46 AM   #4
Becky
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Re: Herceptin side effects?

Usually with the first dose you get Tylenol (as many do get this fever) and benadryl as some can get an allergic reaction. Subsequent doses - you may not need these pre-meds (I didn't). So... if benadryl makes you very sleepy you might have a problem.

The next day I had a super headache that was relieved by tylenol or advil. Herceptin made me alittle tired the next day but I had no problems with it. I do an extreme amount of business travel and continued that throughout Herceptin (although I did not during chemo or rads (have to be around for radiation every day so you can't go out of town).

You could go to work though depending on how benadryl makes you feel. As I said, you might not need the benadryl again after the first time.
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Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
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Used Leukine instead of Neulasta
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Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
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Old 12-31-2011, 05:02 PM   #5
CoolBreeze
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Re: Herceptin side effects?

My only side effect from herceptin is a runny nose. Get used to carrying tissues in your purse! It's a funny kind of runny nose too - pure water. You don't even know it's coming then you'll move your head and whoosh!

I sometimes get a VERY mild backache but nothing a tylenol won't fix. I don't know if it's the herceptin or the big ugly barcaloungers you have to sit in when you get your dose. Somebody above said they got a headache, but I wanted to let you know that I have suffered with migraines for 30 years and herceptin didn't give me one. So, it's not a guarantee, although I'm very sorry for the person who got one.

Herceptin is really a non-event. I have started and stopped a few times and have had several loading doses, don't recall ever getting benedryl or pre-meds with it so if they don't give it to you don't worry. It will just depend on the protocol in your oncologists office.
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Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS
HER2+ ER+/PR- Grade 3, Node Negative

10/20/2009: Right mastectomy, reconstruction with TE
12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy
03/31/2010: Finished chemo
05/01/2010: Began tamoxifen, the worst drug ever
11/18/2010: Reconstruction completed
12/02/2010: Finished herceptin
05/21/2011: Liver Mets. Quit Tamoxifen
06/22/2011: Navelbine/Zometa/Herceptin
10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure!
11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years"
03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa
10/10/2012: Progression continues, started Halaven, along with herceptin and zometa.
01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa
03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta.
04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success!
05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo.
06/07/2013: Fiducial placement for SBRT
07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone
07/25/2013: SBRT (gamma knife) begins
08/01/2013: SBRT completed
08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa
06/18/2014: ***** NED!!!!***** continuing with Perjeta, Herceptin, Zometa
01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly.
11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted.

5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean.

I’m beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now I’m 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.
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Old 01-02-2012, 12:40 AM   #6
KsGal
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Re: Herceptin side effects?

Thanks for the encouragement everyone. I feel good about getting the loading dose Wednesday, because I will be doing something to stop this stuff that is growing in me!!! In fact, I would have taken it the day they told me my biopsy results if I could have, that is how excited I am to get this moving. A little more worried about the taxotere and carbo, but will deal with that in a week or so when the day comes. I will stock up on the tissues. Ugh...the runny nose sounds awful, and I have heard it mentioned more than once. On the other hand, its probably a lot better than liver tumors.
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Old 01-04-2012, 07:01 AM   #7
Sheila
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Re: Herceptin side effects?

The only side effect I have ever had from Herceptin is a runny nose and watery eyes...I have gone through alot of Kleenex in over 9 years that I have been on it, but it is saving my life! Good Luck!
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Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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