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Old 07-29-2012, 10:53 AM   #1
jacqueline1102
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Join Date: Apr 2012
Posts: 183
Herceptin and Perjeta

Hello all,

I have a quick question. I received the TCH trio finishing in February 2012. After surgery and radiation was on Herceptin every three weeks. My liver spot shrunk from 4.6 cm to .9 x .7. My oncologist wants to put me on Perjeta along with the Herceptin to knock out the rest of the liver spot. I thought Perjeta was used only when other therapies have failed which is not the case for me yet. My spot keeps shrinking with the Herceptin. I believe I should stay on the Herceptin only for now until there would be progression. I told him I want to wait and pull this big gun out when I progress. My question is this: "Is perjeta prescribed when other drug therapies have failed?" Or "When should perjeta be prescribed during the process?" It makes no sense for me to take this drug when the Herceptin seems to be working. Thank you all in advance for your help. I so do appreciate your help. Thoughts?

Take care,

Jackie
__________________
10/11 IBC Stage IV; 1 liver met 4.6 cm.
10/11-2/12 TCH for 6 rounds
3/12 Right MRM
5/12-7/12 33 Radiation treatments
8/1/12 Started Perjeta along with the Herceptin
10/12 Scans said NED for first time
5/15 UWSeattle Vaccine Trial 3 months
12/16 Scans still show NED. Herceptin and Perjeta continue indef.
8/17 Taken off Perjeta;staying on Herceptin. Still NEAD.
3/18 Still NEAD
8/19 Now on Subcutaneous Herceptin
10/21 Remain on Subcutaneous Herceptin (Hylecta)
11/21 CT showed possible lung mets. Was told to wait and see until scan
1/22 CT shows continued growth
03/22 Lung Biopsy said sample was too small but nodules keep growing and IR is convinced that it is indeed cancer
04/22 Oncologist referred for consult for a transbronchial biopsy. This does not sound pleasant
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Old 07-29-2012, 11:36 AM   #2
Rolepaul
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Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 391
Re: Herceptin and Perjeta

I say take out the big gun now. Herceptin resistance can occur and you do not want the lone cell to come back in force with resistance. Take the two together and get another 40 years of life out of that beuatiful body.
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Old 07-29-2012, 06:40 PM   #3
Pamelamary
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Location: Melbourne, Australia
Posts: 494
Re: Herceptin and Perjeta

Hi Jackie,
I say go for it - studies reported here show a 1.5 improvement in results with that combination. Not financed in Australia yet though. There are other guns to fire later on if necessary.....
Best wishes.... Pam
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Old 07-29-2012, 11:16 PM   #4
hutchibk
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Posts: 3,519
Re: Herceptin and Perjeta

If you are confused about Pertuzamab, call or email Sonali (patient advocate) and ask what the FDA requirements are for different stages...

Sonali Padhi, MBA, MPH
Associate Director, Advocacy Relations
Genentech, Inc.
Office: 650.467.0842
Mobile: 415.269.7040
sonalip@gene.com
__________________
Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 07-30-2012, 02:20 PM   #5
jacqueline1102
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Join Date: Apr 2012
Posts: 183
Re: Herceptin and Perjeta

Thank you so much, Pam, Rolepaul and Brenda. I so appreciate the advice and information. Take good care today.

Jackie
__________________
10/11 IBC Stage IV; 1 liver met 4.6 cm.
10/11-2/12 TCH for 6 rounds
3/12 Right MRM
5/12-7/12 33 Radiation treatments
8/1/12 Started Perjeta along with the Herceptin
10/12 Scans said NED for first time
5/15 UWSeattle Vaccine Trial 3 months
12/16 Scans still show NED. Herceptin and Perjeta continue indef.
8/17 Taken off Perjeta;staying on Herceptin. Still NEAD.
3/18 Still NEAD
8/19 Now on Subcutaneous Herceptin
10/21 Remain on Subcutaneous Herceptin (Hylecta)
11/21 CT showed possible lung mets. Was told to wait and see until scan
1/22 CT shows continued growth
03/22 Lung Biopsy said sample was too small but nodules keep growing and IR is convinced that it is indeed cancer
04/22 Oncologist referred for consult for a transbronchial biopsy. This does not sound pleasant
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Old 07-31-2012, 06:58 AM   #6
phil
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Join Date: Nov 2010
Posts: 393
Re: Herceptin and Perjeta

I say go for perjeta too . Works in a unique way / w herc , togehter. I dont understand the science of pert yet, but i like what i see w/ Darlene Gants experience , combining herc /pert. She had very, very seriuos liver mets that have been stabilized , controlled by that combo.
We have had very good success treating my wifes stage iv bc , by being aggressive in tx , w/ t dm-1. 7 liver mets , all gone since last Nov. I say try to kill off whats left of liver mets now. i like your onc's attitude !
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Old 07-31-2012, 03:39 PM   #7
yanyan
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Join Date: Apr 2011
Posts: 403
Re: Herceptin and Perjeta

Hi Phil ! How is Darlene doing now? I didn't find any follow up story other than that she finally got Perjeta. It was back in May when she put the heartbreaking video on youtube which got attention from all over the country. She did the right thing ! I found a journal she wrote if anyone is interested

http://www.canceravenues.com/compone...ent/article/31
__________________
1/11 age 36 DX
ER/PR-, Her2 +
TCH*6, Herceptin
BMX with immediate recontruction 5/2011 Lattismus Flap- Dx stage 3c 10/23 nodes
9/11 Radiation
3/12 Local recurrence to skin stage IV
Whole body scan CLEAR
4/12 Tykerb & Xeolda Skin mets slowly regressing
8/12 PET & Brain CT Clear
5/13 Skin mets progressing
6/13 PET scan chestwall recurrence in contralateral anxillary,internal mammary and ipsilateral subpectoral nodes
6/13 kadcyla
10/13 whole body scan -clear NED. previously resolved skin rash gone but 3 new lesions. Biopsy confirmed for skin recurrence
11/13 to 02/14 tykerb & herceptin
02/14 add abraxane/gemzar, 2 weeks on 1 week off at reduced dose
05/14 whole body PET clear/ brain CT clear but skin mets are getting worse, ready for new chemo
05/14 navelbine perjeta herceptin
07/14 skin mets progressing red rash worse
08/14 wide local excision with diep flap to close wound. Final path shows 2 positive margins showing inflammatory carcinoma Going back to surgery in 2 weeks
09/01/14 resection- clear margins
3 weeks after 2nd surgery, a new nodular rash found near drain incision with 2 small red spots behind the chest wall biopsy on 10/1. Positive for breast cancer
Radiation 11/2014 with xeloda then weekly cisplatin
11/14 brain MRI clean
12/14 finished 33 radiations burnt and very painful. Bedridden for 1 week
12/14 t current Herceptin and perjeta only
02/15 rash on upper back right side skin mets radiation planned
02/15 staring electron radiation *35
Stopped at 30 due to severe skin burn, resumed 10 days later
05/15 red patches appeared in between previously radiated area, skin mets. Ct and brain Mri clear. Simulation planned, radiation to start after trip to Alaska.
05/24 new spot identified in scar line on previously radiated reconstructed breast- electron on both side chest wall area and scar line
07/15 multiple skin and lung recurrence begin halaven
11/15 cough much better but very tired on halaven and starting to see some new red skin blotches-suspicious
11/15 heading to China for immune therapy
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Old 08-01-2012, 09:14 AM   #8
phil
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Join Date: Nov 2010
Posts: 393
Re: Herceptin and Perjeta

Shes doing very well, shes on FB. A testimony to the power of pert w/ herc for some her2 pts . Stopped progression in liver, she went to her sons 5th grade graduation , and is living life ! She looks great. She said she has some other areas w/ cancer still in her body , but is holding her own. maybe she could get some t dm-1 later this year .
This all points out what a TRAVESTY This FDA is perpetrating on Stage IV BC pts ! Conditional approval for pert. NO approval for t dm-1. And they get away w/ it . Darlene SPOKE UP , got comp use , before FDA approval. Then they ( Moffit IRB )tried to take it away from her ! Saying it was only a " mixed response ". Better than No response ! And now. Thanks to this Big Brother, " Know - It - All " FDA ; Hospital IRB's , and Ins Co's around the country are denying pert to Stage IV folks !
There will be a reckoning some day soon. I hope it becomes a campaign issue this FAll. Big Govt at its Worst ! I'm an independent, but this is why you need an opposition, checks and balances on any power. FDA, Big Business, IRB's , etc.
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