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Old 05-18-2014, 08:02 PM   #1
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Join Date: May 2010
Location: Owasso, OK
Posts: 44
Question Herceptin + Perjeta - what side effects have you encountered?

I have had to do a third treatment round of chemo, beginning in Nov. Taxol, plus herceptin and perjeta. Only had 2 rounds with taxol due to the neuropathy getting worse. I am looking for info on side effects from just the perjeta and herceptin. I am experiencing a slight loss in smell and taste and wondering if it is the perjeta? I have had herceptin since 2010 with about a 6 month break in 2012. Unfortunately, after I finished 2 years of herceptin and tykerb, we stopped and within 6 months I had a lil ole lymph node in the subpectoral region. Most side effects I find on the internet include an additional drug and just wanting to hear from anyone else on this course of treatment. Have had pet scans about every 2 to 3 months so far, clear, going wednesday to get my latest results. Also, most treatments with perjeta, how many are usually approved with your insurance? Thank you so much for any info you can share. You are my go to source since 2010.
April 2010 - found lump
4/20/10 - breast biopsy- dx 4/21/10
IDC HER2+ Stage IIa, grade 3
SLN biopsy + lumpectomy 5/4/10
2X Lymph Nodes pos + for microscopic metastasis
ct/pet scan 5/27/10 - 1 lymph node "hot"
TCH 6 cycles - completed 5 cycles, x 3 wks, T&C complete-10/8/10
Radiation, daily x 6.5 wks-complete 12/22/2010
Herceptin completed on 5/22/11
PET/CT 6/15/11 2 nodes + her2
axillary LN dissection 7/18/11 3 removed, 2 were + for IDC
IDC stage 2a grade 3 HER2, ER/PR-
4 rounds Adriamycin/Cytoxin every 2 weeks, complete Oct 2011, 750 mg tykerb daily + herceptin dose every 3 weeks, last PET scan NED
Tyker/Hercpetin ended June 2013
October Pet Scan - positive lymph node in subpectoral region - perjeta/herceptin and taxol regimine....X2 now perjeta/herceptin only
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Old 05-19-2014, 10:26 AM   #2
Kim in CA
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Join Date: Sep 2001
Location: California's Gold Country
Posts: 404
Re: Herceptin + Perjeta - what side effects have you encountered?

Hi qpdawlsmom,
I too was on a taxane with Herceptin and Perjeta, and am now just getting the Herceptin and Perjeta every 3 weeks. I lost my sense of taste while on the Taxotere, and had, and still battle with, neuropathy in my hands and feet. My sense of taste gradually returned after stopping the Taxotere.

Currently the only side effect I can attribute to the Perjeta, is intermittant bouts of diarrhea. The bad thing is I'm never really sure when it's going to strike, so get nervous about ever being too far from a toilet!

When my doctor first prescribed the Perjeta, my insurance denied it because it wasn't my first line treatment for metastatic disease. I had to go through Genentech's patient access program to get the drug. Shortly after that, I switched health plans, to Kaiser Permanente, and they had no problem at all giving me the Perjeta.

I just had an MRI of my brain, which was clear....yay! but declined the PET scan because I am concerned about the cumulative level of radiation I've had over the years of fighting this disease. I prefer to use watch my tumor markers and scan if they show an upward trend.

Hope this helps,
Diag. Feb 1997 4.5cm IDC <10%ER+, PR-. 5 out of 36 nodes +. Mastectomy followed by 3 rounds Adriamycin/Cytoxin.

5/1997 Hi Dose Chemo w/ Stem cell rescue. Spent 4 weeks in isolation ward. Then 6 weeks radiation.

9/2001 widespread mets to liver. 8 mos Taxotere/Herceptin brought me almost to NED. Stop Taxotere & add Femara .

11/2002 liver resection to remove spot that turned out to be necrosis. Officially NED!

7/2003 Tumor markers rising add Xeloda Disastrous reaction, 8 days hospital, but tumor markers came back to normal!

June -Dec 2004 UW Vaccine Trial.

7/2005 MRI single 11mm brain met
8/2005 Gamma Knife.

Brain MRI @3 months NED!

2006-2011 brain/body still NED

8/04/11 Taking Herceptin break, will monitor with tumor markers.

6/20/12 Tumor markers begin to rise. CA15-3 is 31.3 and Her2 Serum is at 17.1 Decide to repeat in one month.

7/23/12 CA15-3 now 49.3
Her2 Serum 26.8

8/6/12 Back on Herceptin
CA15-3 now 76
Her2 Serum now 49

11/7/12 Add weekly Taxotere for 4 cycles

2/2013 Stopped Taxotere added Perjeta. MRI shows approx. 50% reduction liver mets. CA15-3 still elevated @ 55. Will continue on just Herceptin & Perjeta.

November 2014 Continuing on Herceptin, Perjeta, and
Femara indefinitely. Guess I'm NED again, but watching those tumor markers carefully!

Dec. 2015 PET scan reveals mass in perirectal area of abdomen.biopsy confirms. Still Her2+, but no longer ER+. Bye bye Femara

Jan 2016 Begin Kadcyla

March 2016 PET scan shows tumor now barely visible, still NED everywhere else.
2016/2017 continue Kadcyla

November 2017 brain MRI reveals small focus of T2 hyperintensity with possible 4mm enhancing nodule. Short term follow up MRI suggested. Stay tuned...
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Old 05-20-2014, 12:58 AM   #3
Aussie Girl
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Join Date: Jul 2013
Posts: 260
Re: Herceptin + Perjeta - what side effects have you encountered?

Have you seen this website about Perjeta?


Perjeta and Herceptin together causes stomatitis (mouth soreness) is 4.6% and the same percent for a bad taste. Not sure about the loss of smell, but Herceptin affects your nose - it makes my nasal mucosa ulcerate and bleed. Others seem to just get a runny nose. Decreases sense of smell could be due to either I suspect.

Hope it mproves

Aussie girl
31mm Infiltrating duct carcinoma
Grade 3, ER/PR-, HER2+, Neg Sentinel nodes x 5
49mm field of DCIS
17 June '13: Screen detected impalpable mass, Mammogram neg, US.
25 June '13: Diagnosed after multiple biopsies and MRIs
28 June '13: Left lumpectomey
4 July '13: Left Mastectomy
12 August '13: Commenced TCH chemo
Mid December '13 : TCH finished. Herceptin continuing three weekly.
4 August 2014- Herceptin infusions finished.
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herceptin, perjeta

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