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09-24-2013, 08:15 AM
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#1
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Senior Member
Join Date: Apr 2008
Location: Sunny San Diego
Posts: 2,214
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Who is receiving Perjeta?
Please share if you are receiving Perjeta as part of a clinical trial. Or in treatment after the approval. Or as compassionate use.
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09-28-2013, 03:00 PM
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#2
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Senior Member
Join Date: Oct 2005
Location: Lakeville, Minnesota
Posts: 199
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Re: Who is receiving Perjeta?
I will start getting perjeta on oct 8. I am getting it " off label".
I am lucky that my dh has really good ins through his work and they decided to cover it.
Laurie
__________________
diagnosed stage 2- 3/2005
4.5 cm & 2+ nodes , er/pr- & HER2+
4 AC
12 taxol/Herceptin
Year of Herceptin
liver mets- July-2010
7 taxotere/Herceptin
RFA- Feb.2011
NED
U of Wa vaccine trial-oct 2011-Feb 2012
Herceptin/tykerb
Ned - 2 1/2 years
Herceptin & perjeta
Ned 3 years
Herceptin- reducing treatments , due to s/e, to 5-6 a year
NED- 3 1/2 years
Ned - 4 years
2/15- stopped herceptin - on no treatment
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09-28-2013, 03:09 PM
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#3
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Senior Member
Join Date: Sep 2013
Posts: 43
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Re: Who is receiving Perjeta?
I did the herceptin/perjeta/taxotere regimen a year ago. The taxotere was removed after 6 cycles and I was on the herceptin/perjeta combo for about two months then I had progression
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09-28-2013, 03:43 PM
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#4
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Senior Member
Join Date: Apr 2008
Location: Sunny San Diego
Posts: 2,214
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Re: Who is receiving Perjeta?
Debsing,
Are you ER/PR positive or negative?
You are currently on TDM1 correct? Are you in the same boat with Lauriesh - the progression is liver mets?
@Lauriesh,
Wow, are you lucky to receive it off label. I hope it is very effective and keeps you NED for a long time. Keep us posted.
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09-28-2013, 04:21 PM
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#5
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Senior Member
Join Date: Sep 2013
Posts: 43
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Re: Who is receiving Perjeta?
I am triple positive.. 95% er+, 5% PR+ and her2 3+, grade 3 tumors
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09-28-2013, 04:25 PM
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#6
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Senior Member
Join Date: Sep 2013
Posts: 43
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Re: Who is receiving Perjeta?
Oh, and mets to the liver, bones, omentum and skin
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09-28-2013, 04:48 PM
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#7
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Senior Member
Join Date: Apr 2008
Location: Sunny San Diego
Posts: 2,214
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Re: Who is receiving Perjeta?
When you were on the Herceptin & Perjeta - did you take anything to block the Estrogen?
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09-28-2013, 05:14 PM
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#8
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Senior Member
Join Date: Sep 2013
Posts: 43
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Re: Who is receiving Perjeta?
So for some reason, I went from herceptin/perjeta/taxotere, to herceptin/perjeta, then to herceptin/perjeta/ navelbine and now tdm1 without any estrogen blockers though I've often wondered why
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09-28-2013, 06:09 PM
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#9
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Senior Member
Join Date: Apr 2008
Location: Sunny San Diego
Posts: 2,214
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Re: Who is receiving Perjeta?
I only ask because ER 95%, and since you progressed in such a short time on the herceptin/perjeta. . . I would wonder about this too. Are you in a clinical trial? I'd ask your medical team about this.
I'm not very familiar with ER+ treatments, but I had a friend who was similar and kept progressing. She hadn't received ER treatments - except prior to the first recurrence.
TDM1 has worked magic for others, hope it is good to you.
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09-28-2013, 06:21 PM
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#10
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Senior Member
Join Date: Sep 2013
Posts: 43
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Re: Who is receiving Perjeta?
Did your friend stop progressing after the estrogen was addressed? Was she her2+ as well?
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09-28-2013, 07:03 PM
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#11
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Senior Member
Join Date: Apr 2008
Location: Sunny San Diego
Posts: 2,214
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Re: Who is receiving Perjeta?
My friend's cancer was ovarian, BRCA positive. I'm not sure if they tested for Her2. My concern was her estrogen was not addressed after the initial treatment. She didn't add them back in, because it didn't "work" initially.
Your cancer is very different.
I wouldn't stress over it, just keep it in mind. Something to read up on and ask your medical team about. I'm just a fan of learning about options.
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09-29-2013, 06:03 PM
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#12
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Senior Member
Join Date: Apr 2012
Posts: 183
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Re: Who is receiving Perjeta?
I am receiving Herceptin and Perjeta and have since August 1, 2012. See my signature line. Good luck.
__________________
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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09-30-2013, 09:39 AM
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#13
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Senior Member
Join Date: Sep 2010
Location: Shelby, N.C.
Posts: 114
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Re: Who is receiving Perjeta?
My wife Barb has been on Perjeta/Herceptin/Taxotere since January with excellent results. The only concern I have had is I cant be sure the Taxotere is accomplishing anything other than wearing her down. My thought is the two inhibitors are doing the work. At this point we and her doctor dont want to stop the chemo for fear it will flare up again. Side effects for Barb on Taxotere have been minimal so we continue with the present combo. I have checked in here frequently to see how you all have been but have been afraid to post Barbs progress for fear of jinxing her Im knocking/beating on my wooden desk at work as I post this. Keep up the fight you are all an inspiration to us.
__________________
Diag. Aug. 2010
ER- PR- Her-2 +++ Stage IV
Mets to T 6th Vertabrae
Radiation to spine
10/23/10StartNavelbine
11/19/10 Port installed
11/22/10 Started 2nd cycle
1/10/11 Finished 2nd cycle
1/24/11 Herceptin Only
3/7/11 progression, start Taxol/Herceptin
4/18/11 Skin mets appear increase treatments to weekly
rash spreads to right breast
7/5/11 enroll in TDM-1 study
7/29/11 randomly assigned Tykerb drop out of trial and start Tykerb /Herceptin no Xeloda skin mets gone Tykerb working
1/31/12 Skin mets return add Xeloda
5/9/12 Stop Tykerb skin mets back
5/17/12 Return to Navelbine/Herceptin
6/26/12 start process for TDM-1 compassionate access
8/28/12 Start TDM-1
10/9/12 third TDM-1 no response yet
10/23/12 Start Haloven
1/17/12 Start Perjeta/ Herceptin/Taxotere
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09-30-2013, 10:01 AM
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#14
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Senior Member
Join Date: Apr 2008
Location: Sunny San Diego
Posts: 2,214
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Re: Who is receiving Perjeta?
Mike,
I'm happy to hear the combination is working. (giving a little knock knock on wood too).
The Taxotere is tough stuff. I see that the Perjeta/Herceptin/Taxotere has been effective since January. That is awesome.
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10-04-2013, 01:57 PM
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#15
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Senior Member
Join Date: Dec 2009
Posts: 562
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Re: Who is receiving Perjeta?
I've been getting perjeta for 6 months or so??? Not quite sure I remember. I get perjeta with herceptin. Few side effects, easy as herceptin, definitely is stopping my cancer in its tracks.
__________________
 http://butdoctorihatepink.com
08/17/09 Dx'd.
Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS
HER2+ ER+/PR- Grade 3, Node Negative
10/20/2009: Right mastectomy, reconstruction with TE
12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy
03/31/2010: Finished chemo
05/01/2010: Began tamoxifen, the worst drug ever
11/18/2010: Reconstruction completed
12/02/2010: Finished herceptin
05/21/2011: Liver Mets. Quit Tamoxifen
06/22/2011: Navelbine/Zometa/Herceptin
10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure!
11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years"
03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa
10/10/2012: Progression continues, started Halaven, along with herceptin and zometa.
01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa
03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta.
04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success!
05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo.
06/07/2013: Fiducial placement for SBRT
07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone
07/25/2013: SBRT (gamma knife) begins
08/01/2013: SBRT completed
08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa
06/18/2014: ***** NED!!!!***** continuing with Perjeta, Herceptin, Zometa
01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly.
11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted.
5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean.
I’m beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now I’m 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.
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10-04-2013, 03:04 PM
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#16
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Senior Member
Join Date: Apr 2008
Location: Sunny San Diego
Posts: 2,214
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Re: Who is receiving Perjeta?
CoolBreese,
So happy for you that the Perjeta & Herceptin has stopped the cancer.
Did you discontinue Zometa in July? or just Gemzar?
Are you currently NED?
It seems like your luck with treatments is turning from bad to good. I sincerely wish that you can keep those unwanted cells at bay with just the targeted therapies.
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10-04-2013, 04:18 PM
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#17
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Senior Member
Join Date: Dec 2009
Posts: 562
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Re: Who is receiving Perjeta?
I still do Zometa, it was just the Gemzar that I had to quit. I can't do any chemo since my grans won't come up above 1.0, or at least, they haven't since January. So it's good that the SBRT seems helpful as does the perjeta without any chemo.
I am not sure they are ever going to say NED with me as I've had a lot of unusual treatments that muddy the waters, but they do say that the tumors look inactive and have "decreased enhancement." My next PET scan will tell a clearer tale but the perjeta had taken a very hot spot down to cold before we did the SBRT so the radiation was done on a spot that was already becoming inactive. How long it stays that way is anybody's guess, but the good news is there are no new lesions anywhere in the liver. Some minor and very tiny spots on the lung but nobody is concerned about it being cancer so I am not either.
I have learned not to expect absolutes from the medical world.
I don't take estrogen blockers either - I asked my doctor, and he said it was because I failed so quickly on tamoxifen and I was only weakly ER+, so he didn't think I'd get any further benefit. I was also pre-menopausal and that played a role but I now forget what it is.
I really think perjeta has done well by me - I hope everybody who qualifies gets a chance to see if it does for them.
__________________
http://butdoctorihatepink.com
08/17/09 Dx'd.
Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS
HER2+ ER+/PR- Grade 3, Node Negative
10/20/2009: Right mastectomy, reconstruction with TE
12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy
03/31/2010: Finished chemo
05/01/2010: Began tamoxifen, the worst drug ever
11/18/2010: Reconstruction completed
12/02/2010: Finished herceptin
05/21/2011: Liver Mets. Quit Tamoxifen
06/22/2011: Navelbine/Zometa/Herceptin
10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure!
11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years"
03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa
10/10/2012: Progression continues, started Halaven, along with herceptin and zometa.
01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa
03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta.
04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success!
05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo.
06/07/2013: Fiducial placement for SBRT
07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone
07/25/2013: SBRT (gamma knife) begins
08/01/2013: SBRT completed
08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa
06/18/2014: ***** NED!!!!***** continuing with Perjeta, Herceptin, Zometa
01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly.
11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted.
5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean.
I’m beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now I’m 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.
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