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03-28-2015, 08:31 AM
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#1
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Senior Member
Join Date: May 2011
Location: Denver, CO
Posts: 1,427
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In Praise of Perjeta
I started on Perjeta about 13 months ago, and I have not had any new lesions in that time. My personal definition of "stable" is "no new lesions." So I'm pleased.
It does cause diarrhea, which can be challenging and difficult to manage. But otherwise it has been quite tolerable.
__________________
Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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03-28-2015, 09:19 AM
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#2
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Senior Member
Join Date: Oct 2012
Posts: 645
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Re: In Praise of Perjeta
yea, Amy! Great news
__________________
March, 2000: 48, Post menopausal (5 yrs HRT) Left breast, IDC 3mm/DCIS 1.6cm, ER+/PR-/Her2+++, mod differentiated, MIB low, lumpectomy, node neg via SNB, rads=33 Stage 1a
June, 2000: Tamox 4.5 years,Femara for 5 years (end in Jan. 2010)
Sept, 2012: 61, Via mamm, ultrasound, biopsy, right breast, 2.3cm tumor, ER+/PR-/Her2+++, poorly diff, KI67 60-70%
BRCA 1 and 2 negative
October, 2012: Bi Mast with tissue expanders, port placement
Final Path: IDC 2.8cm, DCIS, 1/4 sentinal nodes positive (@#$%). Stage IIB
Nov 29, 2012: Begin TCH/6x/every 3 wks, H for 1 year/every 3 weeks.
March 14, 2013: Finished chemo
April 9, 2013: Begin radiation 28x
May 22, 2013: Finished rads
June 1st, 2013: Started Aromasin for 5 yrs.
July 15, 2013: Switched to Letrozole (Femara). Probably for the rest of my life
October 16, 2013: Exchange surgery
October 31, 2013: Finished Herceptin
December 5, 2013: Port removed
Glad this year is over!
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03-28-2015, 10:08 AM
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#3
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Re: In Praise of Perjeta
Great to hear Amy - I guess diarrhea is better than the alternative!
all the best
caya
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08
Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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03-28-2015, 10:28 AM
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#4
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Senior Member
Join Date: May 2011
Location: Denver, CO
Posts: 1,427
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Re: In Praise of Perjeta
I posted because I've seen a few members whose doctors express skepticism about Perjeta because it's so "new." It's not just me, the CLEOPATRA trial showed extremely positive results for it.
__________________
Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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03-28-2015, 10:52 AM
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#5
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Senior Member
Join Date: Aug 2006
Posts: 79
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Re: In Praise of Perjeta
Amy, I've been receiving Perjeta and Heceptin alone for the past 14 months and have remained stable. 12 years at stage 4 for me! I am so grateful.
Kathy
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03-28-2015, 11:24 AM
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#6
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Senior Member
Join Date: Jun 2014
Posts: 113
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Re: In Praise of Perjeta
Yay! I only had 4 rounds of Perjeta along with Herceptin and Taxol. I had a complete response - yipee! I agree about the diarrhea being challenging. I did find that the L-glutamine I took to prevent taxol neuropathy actually helped a bit with managing the diarrhea too. So glad to hear that Perjeta has had such great benefit for so many of us!
Linda
__________________
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5/15/14 Dx IDC, right breast, 2 cm with 3 cm lymph node ER/PR- Her2+
6/11/14 Taxol / Herceptin / Perjeta
9/17/14 Lumpectomy, axillary lymph node dissection 3/9 nodes showed previous involvement but all clear due to THP!!
9/24/14 NED
10/8/14 AC x 4
12/16/14 rads x 20 WBRT only
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03-28-2015, 06:02 PM
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#7
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Senior Member
Join Date: Aug 2010
Location: New York, New York
Posts: 1,580
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Re: In Praise of Perjeta
Linzer,
Did you take L-glutathione for neuropathy? I wish I'd known about it when I started chemo. I'm taking it now to UNDO damage. Fiver years later.
I have been on and off Perjeta since 2011. I think it's a great drug.
Amy,
Wonderful news you have for us. And soon, I believe, we will ALL have the best news yet: either a vaccine, immunotherapy, et al, to CURE us.
Karen
Who Still Believes In The Cure
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03-29-2015, 07:42 AM
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#8
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Senior Member
Join Date: Jun 2014
Posts: 113
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Re: In Praise of Perjeta
KDR, First off, I love your avatar! I was a huge IDOJ fan when I was a kid 
I did take L-glutamine while on taxol. I used a high dose and took it religiously each day. I had minor, transient neuropathy but it did not last. I'm 7 months out from last taxol and I have no signs of neuropathy. I'm so sorry that you have deal with it.
I used the Pure Encapsulations brand. My "research" showed that some brands don't include much glutamine and it's not regulated. You can buy the Pure brand on Amazon.
Good luck!
Linda
__________________
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5/15/14 Dx IDC, right breast, 2 cm with 3 cm lymph node ER/PR- Her2+
6/11/14 Taxol / Herceptin / Perjeta
9/17/14 Lumpectomy, axillary lymph node dissection 3/9 nodes showed previous involvement but all clear due to THP!!
9/24/14 NED
10/8/14 AC x 4
12/16/14 rads x 20 WBRT only
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03-29-2015, 11:45 AM
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#9
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Senior Member
Join Date: May 2013
Posts: 570
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Re: In Praise of Perjeta
Wonderful news! I'm glad to hear that it working so well for so many.
__________________
Tracy Arcari
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11/12 BSE ignored the lump for SIX months.
5/1/13 IDC ER/PR- HER2/neu+++
5/14/13 Mastectomy and SN biopsy
5/20/13 IDC Stage IIb Grade 3 Nodes 1/4 also IDC and DCIS multi focal in remaining dissected tissue.
5/30/13 MUGA and CT thorax, abdomen & pelvis, establish baseline.
6/4/13 Installed my little purple power port.
6/14/13 Chemo started TCH
6/14/13 Informed of suspicious ares on scans scheduled PET.
7/1/13 PET Scan NED!
9/27/13 FINAL CHEMO taken! ----well, maybe not.
10/15/13 Three little tattoos.
10/24/13 Radiation begins and fourth tattoo placed.
11/27/13 Perfectly radiant! Radiation completed the day before Thanksgiving and so, so much to be thankful for this year and every day hereafter.
1/2/14 Happy New Year, you have a Goiter? Muga down to 59%.
1/17/14 Hashimoto's Dz Dx'd. Now maybe I'll feel BETTER!
5/2/14 Herceptin completed! New kitten!
8/19/14 Prophylactic mastectomy (right) and PORT OUT! I'm DONE and now I really am a SURVIVOR.
2/15 Started not feeling so swell. Memory lapses and GI issues with nausea and blurry vision.
4/30/15 U/S cystic gallbladder, cyst on right ovary and mass in my uterus. GYN consult scheduled---and cancelled. I'm not ready.
5/4/15 Brain MRI clear (big sigh of relief)
7/30/15 Back Pain
8/31/15 Radiograph: compression fracture L2
9/10/15 Bone Scan positive
9/21/15 CT scan conclusive for tumor
10/1/15 CT guided biopsy & Brain to Pelvis MRI reveal additional lesions on spine C6, T10, T11 and L2 is collapsing.
10/8/15 Abbreviated pathology: new tumor(s) poorly differentiated carcinoma consistent with known breast primary.
ER-/PR+ (40%) HER2/neu+++ Ki-67 4% Pancytokeratin AE1/3 Strong Positivity in all malignant cells.
10/13/15 Abnormal Dexa: moderate risk of fracture to both femoral head/neck R&L. Significant risk to lumbar spine.
10/14/15 Radiation consult back to the cooker.
10/20/15 MUGA 50% down from 54% after a year off Herceptin (???)
10/21/15 Kyphoplasty L2
10/22/15 Re-start Chemo: Perjeta, Herceptin & Taxotere
10/26/15 PET Scan confirms C6, T10-11, L2, new lesion noted at L4 but no visceral involvement---Happy dance!!!
10//29/15 Xgeva
10/29/15 Radiation Simulation--three new tattoos to add to my collection. Just call me Dotty.
10/30/15 CA27-29 63 U/mol (<38 U/mol)
11/3/15 First Trip to see Dr. E. Mayer at DFCI
11/4/15 Surgical consult to re-install my little purple power port.
11/9/15 Radiation treatment one of five.
11/10/15 Installed my little purple power port and not a moment too soon, took them four tries to get an IV started today.
Yes, we really are going down this road again.
12/5/15 CT for suspected pulmonary embolism demonstrates increase in T10-11 mets.
12/8/15 Bone Scan uptake at T10-11 (not seen 9/17/15) & Right 8th Rib (not evident on PET 10/26/15)
12/10/15 Consult Re: PROGRESSION. Halt THP due today. Schedule PET and order TDM1 for next week. PLAN B.
12/14/15 PET scan: NO PROGRESSION! THP is working, metabolic activity minimal. Merry Christmas to me! Sticking with PLAN A, it's working.
1/7/16 Start Taxol weekly instead of Taxotere (has been too taxing and not rebounding between txs.) Zometa instead of Xgeva.
3/28/16 CT shows new sclerotic lesions on T12, L3, L5, L6, right ilium and head of right femur. No uptake on Bone Scan (progression????)
3/31/16 Discontinue Taxol start Arimidex, still getting H&P.
6/2/16 Discontinue Arimidex and start Exemestane.
6/18/16 PET is NEAD!!
7/1/16 Discontinue Exemestane and restart Armidex (SEs)
8/29/16 CT/Bone Scan Stable (still uptake at T10-11)
10/3/16 BSO pathology negative
10/10/16 MRI: Brain clear!
10/14/16 Switched care to Harold Alfond Center for Cancer Care
11/24/16 Xgeva, New MO preference to Zometa
12/12/16 CT/Bone scan Mostly stable significant uptake at L2 plan to PET
1/12/17 PET shows NEAD celebrate with a new puppy!
3/29/17 CT & BS = NEAD
7/31/17 Aetna denies access to H&P <gearing up for a fight>
8/4/17 CT& BS= STABLE
8/9/17 No treatment, Aetna still denying H&P
8/14/17 Aetna appeal approved H&P through February 2018!
2/5/18 CT & BS = STABLE
/ /
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03-29-2015, 06:15 PM
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#10
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Senior Member
Join Date: Mar 2014
Posts: 95
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Re: In Praise of Perjeta
Hi Amy,
I also heard about the very positive outcome from the Cleopatra trial - in particular, my chemo nurse (I'm currently on Herceptin / Perjeta maintenance every 3 weeks) told me that they had very, very positive results for the Herceptin + Perjeta combo for women that get this as first line... Will ask her again on Wedensday mybe she can give me more details.
For the "D" - I have heard that that can be the case, and so sorry that it is for you - must be tough. I have been on it for over a year now, and I guess I'm just lucky, but wanted to let others know that while it's quite often the case, it does not always have to be - I do not have diarrhea on Perjeta so far!
__________________
Annette
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03/2014: Diagnosed with ER/PR-, HER2+++ MBC (bone mets, oligometastatic)
04/2014: Started 6 cycles of "PHD" (Perjeta, Herceptin, Docetaxol)
07/2014: Finished 6 cycles of PHD; restaging; 2 bone mets are sclerotic - looks like Herceptin and Perjeta is working
10/2014: STABLE!
01/2015: STABLE!
04/2015: STABLE!
08/2015: STABLE!
12/2015: BRAIN METS. BODY STABLE.
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03-29-2015, 06:20 PM
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#11
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Senior Member
Join Date: Mar 2014
Posts: 44
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Re: In Praise of Perjeta
Great news!
__________________
Laurie in Idaho
IDC, Her2+++, PR- ER- diagnosed Feb 2014 1 month before 53rd bday
2.6 cm mass right breast with lymph node involvement
THP-FEC neoadjuvant chemo regimen
THP (taxotere, Herceptin, perjcta) every 3 weeks for 4 doses started 3/27/14
BRCA negative
bilateral mastectomy with lymph node dissection done June 2014 15 lymph nodes removed all negative for cancer, breast tumor gone
FEC (5-FU, epriubicin, Cytoxan) every 3 weeks for 4 doses, Herceptin every 3 weeks for a year, then
radiation for 6 weeks
New Years Eve 2014 completed radiation
September 2015 Latissimus Dorsi Flap reconstruction
March 2016 rib fractures under implant
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03-30-2015, 01:32 AM
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#12
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Senior Member
Join Date: Dec 2009
Posts: 562
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Re: In Praise of Perjeta
Great drug. I've been on it two years. No bowel issues either, and I've read the magic sentence "no evidence of recurrent metastatic disease." I know it saved my life.
Glad it's helping you although I am sorry about the side effect. I hope it's managable.
__________________
 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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03-30-2015, 12:27 PM
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#13
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Member
Join Date: Dec 2014
Posts: 18
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Re: In Praise of Perjeta
Amy, such good news for you And thanks for sharing. I have bone and liver mets and I'm also on Herceptin and Perjerta as first line treatment. It's great to hear a positive story |
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03-30-2015, 06:11 PM
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#14
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Senior Member
Join Date: Feb 2014
Posts: 52
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Re: In Praise of Perjeta
Congratulations!! It's an amazing combination. I had 4 rounds of Perjeta with Herceptin and may be the only person on this board who had it in the adjuvant setting for stage 2 disease. Long story, but I was able to convince the docs at UCSF to approve it in my case due to a cancerous lymph node missed in surgery at a different hospital. The node would allow them to "study" the effects of the drugs and placed me in between neoadjuvant ands adjuvant. Pet scan at the end of chemo/P and H and no evidence of disease.
__________________
Kathryn Ellman
8/2013 Diagnosed age 42 with boys aged 2.5 and 6, Stage 11b, 1 cm her2+++, 30% ER positive, 5% PR positive, Rt Breast. Also DCIS in second spot of rt breast, high grade.
9/2013 Bilateral mastectomy, 3 nodes positive
10/13 Started AC/TH, Perjeta and Herceptin
1/14 Finished Chemo
3/14 Radiation, 5 weeks
4/14 Started Tamoxifen
6/14 Discontinued Tamoxifen due to extreme joint pain, exhaustion and depression
6/14 Started Exemestane and Zolodex shots to suppress ovaries
11/14 Finished Herceptin
11/14 Discontinued Exemestane due to similar side effects as Tamoxifen.
1/15 Reconstruction
3/15 CT Scan (routine) shows possible liver mets.
3/15 PET/CT scan shows no mets - huge sigh of relief
4/15 Began Letrozole. Knee and hip joint discomfort but minimal. Otherwise, knocking on wood - so far, so good!
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03-30-2015, 07:33 PM
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#15
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Senior Member
Join Date: Jan 2010
Location: Edmonds, WA
Posts: 202
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Re: In Praise of Perjeta
How much L-Glutathione did you ladies take?
__________________
Diagnosed June, 2006 HER2+++, ER- PR-, Grade 3, Stage IIB. Modified radical mastectomy, radiation, chemo, Herceptin, Tykerb 1 year. [*]In remission until 2/2010. Small tumor detected on chest wall during routine scan. 2/2010 surgery to remove tumor, started Herceptin/Tykerb, follow up radiation. [*]12/26/2010 - Off Tykerb due to allergic reaction[*]12/16/2014 - Have continued on Herception for almost 5 years now and remain NED. Discussion with onc re adding Perjeta to the Herceptin as another way of preventing recurrence. Still in discussion phase. 12/26/14 Onc applying for approval for Perjeta.
Perjeta approved and I received one infusion. It had an immediate impact to my lungs and I experienced difficulty breathing so.....I'm going to be sticking with just Herceptin. Still looking for a good vaccine program to enroll in.
Debbie K
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03-30-2015, 07:55 PM
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#16
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Senior Member
Join Date: Jan 2010
Location: Edmonds, WA
Posts: 202
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Re: In Praise of Perjeta
Is anyone who is on the Herceptin/Perjeta combo having issues with nausea? I had my first treatment about a week and a half ago and had pretty severe nausea for several days. I am hoping that it was either as a result of the loading dose or that I may have just picked up a virus around the same time and this is not a side effect for me long term.
__________________
Diagnosed June, 2006 HER2+++, ER- PR-, Grade 3, Stage IIB. Modified radical mastectomy, radiation, chemo, Herceptin, Tykerb 1 year. [*]In remission until 2/2010. Small tumor detected on chest wall during routine scan. 2/2010 surgery to remove tumor, started Herceptin/Tykerb, follow up radiation. [*]12/26/2010 - Off Tykerb due to allergic reaction[*]12/16/2014 - Have continued on Herception for almost 5 years now and remain NED. Discussion with onc re adding Perjeta to the Herceptin as another way of preventing recurrence. Still in discussion phase. 12/26/14 Onc applying for approval for Perjeta.
Perjeta approved and I received one infusion. It had an immediate impact to my lungs and I experienced difficulty breathing so.....I'm going to be sticking with just Herceptin. Still looking for a good vaccine program to enroll in.
Debbie K
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09-28-2016, 05:13 AM
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#17
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Senior Member
Join Date: Sep 2016
Posts: 459
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Re: In Praise of Perjeta
I’m glad to hear such positive results from Perjeta. I was supposed to start TDM-1 yesterday, as my breast cancer has spread to my lungs, after having surgery, chemo (Carboplatin and Docetaxal) and radiation, however, my oncologist wants me to take Perjeta first, because if it doesn’t work, I can still take the TDM-1 at a later day, however, if I take the TDM-1 first, and it doesn’t work, I cannot take the Perjeta later. So, I will now be taking Perjeta with my Herceptin every three weeks for an indefinite amount of time, along with Taxol for 8 to 16 treatments. The good news is, I will be given a very minimal amount of the Taxol, so I will have very little, if any, side-effects. The bad news is, my hair might thin out, just as it was getting long enough to not have to wear a wig anymore! Oh well, as long as it works, that’s all I care about. My oncologist advised that the Perjeta is a very effective drug that will attack all of the cancer cells in my body, and that she’s seen good results with this drug in the past, so let’s hope it works for me. She also advised that I shouldn’t experience any side-effects from this drug.
My oncologist also advised that she’s going to a conference in Copenhagen in a few weeks, and she’s going to discuss my case with other oncologists, and see if she can find a clinical study for me. One study she mentioned is the Hermione trial, however, she’s going to see if there are any new ones. I asked her about immunotherapy, which helped former president Jimmy Carter which his advanced Melanoma, but she advised that there is no immunotherapy for HER 2 Positive patients yet. In the meantime, I’m just hoping the Perjeta works, as my first round of chemo didn’t!
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10-03-2016, 04:42 AM
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#18
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Senior Member
Join Date: Nov 2010
Posts: 393
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Re: In Praise of Perjeta
so glad it is working for you. i caution all stage iv her2 's who have progressed on previous tx. , get scanned , markers regularly. including pet ct or boone scan annually . perjeta and herceptin are genetic , not chemo. some of our stage iv sisters on perj/herc alone had it come back , in bones , brain . after 2 yrs . i dont mean to be a downer - just proactive. hopefully there are perjeta super responders out there . ( u know, the " C " word ) hope u are one . God Bless, Heal!
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10-03-2016, 10:26 AM
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#19
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Senior Member
Join Date: Sep 2001
Location: California's Gold Country
Posts: 404
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Re: In Praise of Perjeta
Good advice Phil!
I had pretty much stopped having PET scans because of all the radiation over the years, and just relied on tumor markers which had always been so accurate for me.
Big mistake! My recurrence last Dec. was not picked up by my tumor markers, and the estrogen receptor status had changed as well. Still learning as I go into my 20th year with this disease!
However, I did get over 2 years on just Herceptin and Perjeta.
__________________
Diag. Feb 1997 4.5cm IDC <10%ER+, PR-. 5 out of 36 nodes +. Mastectomy followed by 3 rounds Adriamycin/Cytoxin.
5/1997 Hi Dose Chemo w/ Stem cell rescue. Spent 4 weeks in isolation ward. Then 6 weeks radiation.
9/2001 widespread mets to liver. 8 mos Taxotere/Herceptin brought me almost to NED. Stop Taxotere & add Femara .
11/2002 liver resection to remove spot that turned out to be necrosis. Officially NED!
7/2003 Tumor markers rising add Xeloda Disastrous reaction, 8 days hospital, but tumor markers came back to normal!
June -Dec 2004 UW Vaccine Trial.
7/2005 MRI single 11mm brain met
8/2005 Gamma Knife.
Brain MRI @3 months NED!
2006-2011 brain/body still NED
8/04/11 Taking Herceptin break, will monitor with tumor markers.
6/20/12 Tumor markers begin to rise. CA15-3 is 31.3 and Her2 Serum is at 17.1 Decide to repeat in one month.
7/23/12 CA15-3 now 49.3
Her2 Serum 26.8
8/6/12 Back on Herceptin
CA15-3 now 76
Her2 Serum now 49
11/7/12 Add weekly Taxotere for 4 cycles
2/2013 Stopped Taxotere added Perjeta. MRI shows approx. 50% reduction liver mets. CA15-3 still elevated @ 55. Will continue on just Herceptin & Perjeta.
November 2014 Continuing on Herceptin, Perjeta, and
Femara indefinitely. Guess I'm NED again, but watching those tumor markers carefully!
Dec. 2015 PET scan reveals mass in perirectal area of abdomen.biopsy confirms. Still Her2+, but no longer ER+. Bye bye Femara
Jan 2016 Begin Kadcyla
March 2016 PET scan shows tumor now barely visible, still NED everywhere else.
2016/2017 continue Kadcyla
November 2017 brain MRI reveals small focus of T2 hyperintensity with possible 4mm enhancing nodule. Short term follow up MRI suggested. Stay tuned...
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10-03-2016, 11:21 AM
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#20
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Senior Member
Join Date: Sep 2016
Posts: 459
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Re: In Praise of Perjeta
Hi Kim,
As a newbie, it’s very hopeful to someone like me to know that there are people like you, who are still alive 20 years after diagnosis. I’m also glad to know that the Herceptin and Perjeta worked for you for two years. I hope it works for me for a long time, but if even if it only works for two years, like it did for you, I know that a lot can happen in two years. Right now my back-up drug is TDM-1, however, new, more advanced treatment, may come out in the next few years. For now, I’ll take all of the time I can get!
My oncologist told me that for now, I will be going for updated scans approximately every three months. That could change though depending on how successful the treatment is. Even if the treatment does work well for me, I will definitely push for frequent scans.
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