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-   -   Herceptin + Perjeta - what side effects have you encountered? (https://her2support.org/vbulletin/showthread.php?t=61023)

qpdawlsmom 05-18-2014 08:02 PM

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.

Kim in CA 05-19-2014 10:26 AM

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,
Kim

Aussie Girl 05-20-2014 12:58 AM

Re: Herceptin + Perjeta - what side effects have you encountered?
 
Have you seen this website about Perjeta?

http://www.perjeta.com/patient/supportresources

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


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