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Old 09-11-2015, 09:10 AM   #1
ttice
Member
 
Join Date: Aug 2015
Posts: 5
Perjeta Qualifications?

Hello :-) I asked my doctor about adding Perjeta to my regiment of TCH. He is going to check into it, but I am curious about people who "qualify" to receive this. I already had surgery, so I am adjuvant in my treatment plan. I had micromats in my sentinel lymph node and my tumor was pretty large (6 cm long, but pretty thin). I live in the midwest and was wondering what trend is for women in a similar circumstance within the rest of the country/world. The wording on the Perjeta print out I received seemed vague when talking about adjuvant therapy. It seemed there could be some confusion on use of it post surgery. Any experiences, suggestion, or advice would be greatly appreciated.

June 17, 2015-Diagnosed Stage 2 mammary carcinoma with lobular features
July 7, 2015-Double mastectomy with sentinel node biopsy; er+, pr+, her2+
August 14, 2015-Port installed
August 19-First chemo of TCH (six in all every 21 days, then H for a year, and perhaps radiation)
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Old 09-11-2015, 09:58 AM   #2
Juls
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Join Date: Mar 2014
Location: UK
Posts: 563
Re: Perjeta Qualifications?

Hi
I am on H & P. started after surgery & initially given with Docetaxol. The only reason I'm receiving it here is because it is a trial. So far it has been turned down twice by Scottish Medicine Board on cost basis. Find this really worrying especially as results are good. I find H & P easy to take and would recommend - if you can get it!

Re the trial - not all have had surgery!
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Old 09-11-2015, 10:35 AM   #3
Carol Ann
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Join Date: Dec 2013
Posts: 1,045
Re: Perjeta Qualifications?

If you are Stage 2, you should qualify. I did not because I was Stage 1, no lymph node involvement and tumor < 2 cm. I'm pretty sure you need a tumor 2 cm or greater, and/or lymph node involvement to qualify.

Carol Ann
__________________
July 24, 2013: "Infected" Right Nipple and benign cyst removed, pathology report revealed Paget's, DCIS, and ILC 1.25 cm, ER+/Pro+/HER2 equivocal, Grade 2 under benign cyst, previous diagnostic mammo/ultrasound said I was perfectly healthy in both breasts.

Aug 18, 2013: MRI report says Left breast is perfectly healthy "consistent with previous studies".

Sept 2013: I insist on a bilateral mastectomy anyway. Too nervewracking to let left breast remain with higher risk after 3 cancers in right, nipple in right is already gone anyhow.

Sept 18, 2013: Bilateral mastectomy, 11 right nodes removed, ALL negative BUT -- ER+/PRO+/HER2+ tumor, 1.0 cm, Grade 2 found in a piece of "grossly unremarkable" breast tissue from prophylactic mastectomy of left breast, no nodes removed.

Oct 25, 2013: 13 left side nodes removed, ALL negative, Stage 1 across the board, NO RADS needed, YAAAAY! Port also installed.

Nov 25, 2013 Begin 6 rounds TCH.

March 10, 2014 Just finished 6th and LAST Chemo today, YAAAAAY!

March 24, 2014 Echocardiogram to make sure I'm still good for Herceptin every 3 weeks.

March 31, 2014 Echo results NORMAL, first Herceptin all by itself. Now if only my eyes would stop streaming from the Taxotere ... :)

April 21, 2014 Started Arimidex and therapy for "mild" lymphedema in left hand and arm

May 2014 Therapy completed, I have sleeves and gloves for both arms, a Flexi touch lymph pump to hook up to for an hour every day, and I've become an arm bandaging expert. :)

June 2014 Begin Fosamax to prevent osteoporosis; bone scan revealed osteopenia

Nov 17, 2014 FINAL Herceptin!

Dec 4, 2014 My right thigh muscle has been extra achy for days ... I discover a blister rash cluster on the side of my right thigh while taking a shower. Port appointment cancelled until Dec 17, my doc is working me in tomorrow afternoon to see me and the rash. My muscle at least feels less achy.

Dec 5, 2014 Yep, I have shingles. Boo! I start acyclovir and also have a prescription for a painkiller just in case for over the weekend.

Dec 17, 2014 Port is OUT!

January 2016 Shingles again and this time it started where my left breast (where the hidden HER2+++ tumor was!) used to be. My onc nurse got me a same day appointment to see my doc when I called and told her I had a rash on the site. The antiviral meds are working once again, though, so that is good news. :)
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Old 09-11-2015, 12:07 PM   #4
agness
Senior Member
 
Join Date: Aug 2014
Location: Seattle, WA
Posts: 285
Re: Perjeta Qualifications?

It was originally approved in 2013 for locally advanced disease as neoadjuvant treatment. They were going to expand the target group over the past year so you should qualify now. I know someone who had surgery first and then was found to be triple positive as you are and she was able to get it as an adjuvant treatment with herceptin.

Look into ovarian suppression as well (Zoladex or Lupron), it might be worth it at least during treatment with Herceptin. It was rough with TCHP -- it also works to inhibit malignant cells in the breast like tamox but doesn't stimulate the female reproductive organs.
__________________
  • Dx 2/14 3b HER2+/HR- left breast, left axilla, internal mammary node (behind breast bone). Neoadjuvant TCHP 3/14-7/2. PCR 8/14 LX and SND. 10/21-12/9 Proton therapy to chest wall.
  • Dx 7/20/15 cerebellar met 3.5x5cm HER2+/HR-/GATA3+ 7/23/15 Craniotomy.
  • 7/29/15 bone scan clear. 8/3/15 PET clean scan. LINAC SRS (5 fractions) Sept 2015. 9/17/15 CSF NED, 9/24/15 CSF NED, 11/2/15 CSF NED.
  • 10/27/15 atypical uptake in right cerebellum - inflammation?
  • 12/1/15 Leptomeningeal dx. Starting IT Herceptin.
  • 1/16 - 16 fractions of tomotherapy to cerebellum, break of IT Herceptin during rads, resume at 100 mg weekly
  • 3/2016 - stable scan
  • 5/2016 stable scan
  • 7/2016 pseudoprogression?
  • 9/2016 more LM, start new chemo protocol and IV therapy treatment with HBOT
  • 11/2016 Cyberknife to temporal lobe, HBOT just prior
  • 12/2016 - lesions starting to show shrinkage
  • 8/2017 - Stable since Dec 2016. Temporal lobe lesion gone.
  • Using TCM, naturopathic oncology, physical therapy, chiro, massage, medical qigong, and energetic healing modalities in tandem. Stops at nothing.
  • Mother of 2 boys - ages 7 and 10 (8/2017) and a lovely partner with lots to live for.
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