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Old 07-21-2014, 03:00 PM   #1
Lesleycstephen
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Join Date: May 2014
Posts: 6
Perjeta reaction

Hi
I'm in the UK and was only diagnosed 3 months ago with primary and secondary BC, with mets unfortunately to my lungs, liver and bones. As you can imagine it has been a rollercoaster 3 months, as I hadnt even known I had cancer let alone secondary. I am HER2 positive and immediately started on Docetaxel with Herceptin and Perjeta (known as Pertuzumab in the UK).

Even more unfortunately, at my second cycle with these drugs I had an anaphylactic reaction to Perjeta - as soon as the infusion went in, struggled to breathe, coughing non stop, blood pressure low etc. All stabilised after oxygen and antihistamine, but my consultant said too dangerous for me to have Perjeta any more. That was several months ago and I have continued on Docetaxel and Herceptin. First scan shows a reduction in all met areas, so good news. However I am still very disappointed I can't take Perjeta. Does anyone else have any experience of moderate reactions like mine to it, and is there anything the consultants can do to minimise the reaction? eg very slow infusion? I had already been given some antiallergen meds before the infusion, and my consultant says he can't increase that dose. He said that the 3rd dose of Perjeta could see an even stronger (fatal) reaction, or maybe not.

I totally understand why he says the risk is too high, but someone told me that Herceptin had a similar reaction in many people in its early days - I am desperate to see if I can give it another go.

So does anyone have any experience of this reaction? Did you give it another go?
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Old 07-21-2014, 03:06 PM   #2
KathyT
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Join Date: Mar 2014
Location: Glendale, AZ
Posts: 208
Re: Perjeta reaction

I received TCHP but had no reaction during any of my 6 treatments. Sorry I can't be of help for you
Good luck!
__________________
Kathy
38 years old!

January 17th 2014-mammo, ultrasound, biopsy
January 20th 2014- diagnosed, ER/PR+, Her2+++, Stage 2A
January 21st 2014-MRI, right breast only plus lymph nodes
January 23rd 2014- Pet scan-2 cm tumor, 3 lymph nodes
February 4th 2014-port insertion
February 12th 2014-first chemo treatment(TCHP x6 cycles)
May 28th 2014-LAST chemo treatment!!
July 10th 2014-double mastectomy
July 29th 2014-start radiation(30)
Sept. 11th 2014last radiation treatment!!!
November 12 2014-started Tamoxifen
January 20 2015-reconstruction begins, lat flap
February 4 2015-last Herceptin treatment!!
April 24, 2015- pet scan-NED!!
June 3 2015- exchange surgery, port removed!!
September 8 2015-hysterectomy/oophorectomy
September 15 2015-Revision of lat flap reconstruction
December 23 2015-nipple reconstruction
May 9th 2016-Mets to pituitary gland, liver and C7 vertebrae
May 10th-port put back in:(
May 17th- biopsy of mass on back
May 19th-started Herceptin/Perjeta
May 20th-5 treatments Cyberknife to pituitary gland tumor
June 9th-Started THP (will have 6 cycles)
August 17th-MRI of brain, significant reduction in tumor
😃, repeat MRI in 3 months. Received first Zometa
infusion.
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Old 07-30-2014, 05:16 PM   #3
linzer
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Join Date: Jun 2014
Posts: 111
Re: Perjeta reaction

I have not had a Perjeta reaction. I have one more to go. I do know though that my center, Dana Farber, has a desensitization team whose sole job is to come up with a protocol to make sure that each person can continue to get the infusions even after reaction. They come up with a plan of pre-meds combined with dedicated nursing support. You may want to push for something like that. Good luck. Sorry you have to go through this
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Old 07-31-2014, 05:06 PM   #4
tricia keegan
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Location: Ireland
Posts: 3,319
Re: Perjeta reaction

Maybe your Onc can contact Dana Farber to see how they continue their patients in this situation?
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015
Stopped Arimidex July 2014- Restarted Arimidex for a further two years on the advice of my Onc.
2014 Normal Dexa scan
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Old 05-05-2015, 02:31 PM   #5
Teal55
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Join Date: Apr 2015
Posts: 47
Re: Perjeta reaction

Hello Kathy,

I saw that you were on TCHP. Do you mind sharing your experience. I will have my port placed tomorrow and then start my FIRST round on Thursday. I am a bit nervious and anxious. I was diagnosed two months ago and now will be in a clinical trial.
Were you in a clinical trial as well? How are you doing now? What was the results after 6 rounds? Did it really take a toll on your body?

I'm so happy I found this site. I have no one to talk to about HER2 positive, Estrogen ++.

Look forward to hearing from you.

Warm Regards,

Teal
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Old 05-06-2015, 09:42 PM   #6
KathyT
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Join Date: Mar 2014
Location: Glendale, AZ
Posts: 208
Re: Perjeta reaction

Teal, I pm'd you!! I will be praying for you tomorrow! Bring things to keep you busy...books, ipad etc. I also brought a comfy blanket. I had chemo before surgery and very happy and comfortable with that decision!! Please feel free to get in touch with me, I gave you my email and phone number in my pm!

Best wishes,
Kathy
__________________
Kathy
38 years old!

January 17th 2014-mammo, ultrasound, biopsy
January 20th 2014- diagnosed, ER/PR+, Her2+++, Stage 2A
January 21st 2014-MRI, right breast only plus lymph nodes
January 23rd 2014- Pet scan-2 cm tumor, 3 lymph nodes
February 4th 2014-port insertion
February 12th 2014-first chemo treatment(TCHP x6 cycles)
May 28th 2014-LAST chemo treatment!!
July 10th 2014-double mastectomy
July 29th 2014-start radiation(30)
Sept. 11th 2014last radiation treatment!!!
November 12 2014-started Tamoxifen
January 20 2015-reconstruction begins, lat flap
February 4 2015-last Herceptin treatment!!
April 24, 2015- pet scan-NED!!
June 3 2015- exchange surgery, port removed!!
September 8 2015-hysterectomy/oophorectomy
September 15 2015-Revision of lat flap reconstruction
December 23 2015-nipple reconstruction
May 9th 2016-Mets to pituitary gland, liver and C7 vertebrae
May 10th-port put back in:(
May 17th- biopsy of mass on back
May 19th-started Herceptin/Perjeta
May 20th-5 treatments Cyberknife to pituitary gland tumor
June 9th-Started THP (will have 6 cycles)
August 17th-MRI of brain, significant reduction in tumor
😃, repeat MRI in 3 months. Received first Zometa
infusion.
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Old 06-17-2015, 09:53 AM   #7
Teal55
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Join Date: Apr 2015
Posts: 47
Re: Perjeta reaction

Hi Kathy
i just saw your reply. Thank you again for your support and taking the time. Im really struggling with side effects. My eyes have also been swelling n blurry at times. Have a great week! You are so kind to share your TCHP experience.
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Old 07-21-2015, 09:21 AM   #8
Colleen
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Location: Monarch Beach, CA
Posts: 74
Re: Perjeta reaction

I too am stage IV with mets to my liver and several lymph nodes involved. I was diagnosed as stage IV at initial BC diagnosis in October of 2013. I received taxotere, Herceptin, and perjeta for 6 cycles, ending in February of 2014. At that point we dropped the taxane (thank god!) and have since continued with Herceptin and perjeta every three weeks. While I was receiving the taxane cycles I was on decradon the day before, the day of, and the day after infusion along with an IV of decradon (which was always given right before the taxotere). I did not have any problems with adverse reactions and have gone on to be NED since April of 2014. Hang in there, there has been outstanding responses to Herceptin and a taxane without perjeta. But I also agree with contacting a place like Dana Farber, MD Anderson or Sloan Kettering for advice regarding adverse reactions to perjeta. All of these are top cancer centers in the US and are involved in research and clinical trials.
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