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Old 05-29-2012, 06:17 AM   #1
jml
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Herceptin flu?
Hi Friends~
Just wondering if you guys still get the Herceptin flu after each infusion, and how long does it last for you?
I've been getting q3week Herceptin for close to a decade & I know to take a couple of tylenol during my infusion otherwise I start to feel flu-ey about an hour after the infusion.
But lately I think I've noticed that in the few days following, I spike a little temp, ~99deg, sometime during the day, typically in the late afternoon.
I don't know...it could be so many things with me & not the Herceptin. I'm chronically neutropenic, take oral cytoxan that is very hard on the bladder & predisposes me to bladder irrittation & UTI, and I just got a transfusion last Friday.
I'm just so tired of feeling puny, not knowing if I'm going to get through a day without Tylenol AND now I'm paranoid about the effects of Tylenol on my liver, as my bilirubin was elevated when I had labs last week.
Sorry to be so grumpy this morning...maybe I should go back to bed & get up on the other side?

Keeping the Faith~

Jml
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Old 05-29-2012, 07:26 AM   #2
NEDenise
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Re: Herceptin flu?
Jessica,
I'm headed out for my Vitamin H in a little while, and I've already taken my Claritin, and a couple of ibuprofen to try to stave off just the symptoms you describe. My Herceptin side effects are certainly not debilitating, but they make me want to sleep most of the following day.

Have you considered alternating between tylenol and ibuprofen to give your liver a break?

Wishing you well!
Denise
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1/11-needle biopsy
 2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
 3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
 4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
 8/26/11 finished Taxol!!!
 10/7/11 mastectomy/DIEP recon
 11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
 1/12 Low EF/Herceptin "Holiday" :(
 2/12 EF up - Back on Herceptin, heart meds
 4/2/1212 surgery to repair separated incision from DIEP recon
 6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
 7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
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Old 05-29-2012, 05:51 PM   #3
Sheila
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Re: Herceptin flu?
Jessica
I only had that with the first infusion, and never had it since....I have had Herceptin given weekly, every 2 weeks, every 3 weeks....like all drugs, we can react differently, sometimes not to the drug, but the compound it is reconstituted in. hope you are feeling better
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Hugs & Blessings
Sheila
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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Old 05-29-2012, 06:30 PM   #4
CoolBreeze
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Re: Herceptin flu?
"herceptin flu" Never even heard that term!

I've been on herceptin for 3 years and have never had any flu symptoms from it. Sorry you do.
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08/17/09 Dx'd.
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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