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Old 10-08-2012, 12:32 PM   #1
KDR
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Join Date: Aug 2010
Location: New York, New York
Posts: 1,580
Herceptin/Perjeta?

Hi,
Have you been on Herceptin and Perjeta alone and seen your markers and/or tumors shrink? I think this is the ideal combination, if you can get along without chemo. Thanks for any input.
Karen
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World Trade Center Survivor (56th Floor/North Tower): 14 years and still just like yesterday.
Graves Disease, became Euthyroid via Radioactive Iodine, June 2001.
Thyroid Eye Disease. 2003. Decompression surgery in 2009; eyelid lowering surgery in 2010.
Diagnosed: June 2010, liver mets. ER-/PR+10%; HER2+++.
July 2010: Begin Taxol/Herceptin. Eliminate sugar from diet. No surgery or radiation.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Stop Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
November 2011: Progression in liver. All other tumors remain eradicated.
December 2011: BEGIN TRIAL #09-093 Taxol, MCC-DM1 (T-DM1), Perjeta.
Trial requires scans every six weeks, bloodwork and infusions weekly.
Brain MRI: clear.
January 2012: NED. Liver mets, good riddance!
March 2012: NED. Developed SMA (rare blood clot) in intestinal artery and loss of sight in right eye due to optical nerve neuropathy. Resolved when Taxol removed this month.
Continue Protocol of T-DM1 weekly and Perjeta every 3 weeks.
May 2012: NED.
June 2012: Brain MRI: clear.
June-December 2012: NED.
December 2012: TRIAL CONCLUDED; ENTER TRIAL EXTENSION #09-037. CT, Brain MRI, bone scan: clear. NED.
January-March 2013: NED.
June 2013: Brain MRI: clear. CEA upticking; CT shows new met on liver.
July 3, 2013: DISASTER STRIKES during liver ablation: sloppy surgeon cuts intercostal artery and I bleed out, lose 3.5 liters of blood, have major hemothorax, and collapsed lung requiring emergency resuscitative thoracotomy, lung surgery, rib rearrangement and cutting deep connective tissue, transfusion. Ablation incomplete. This life-saving procedure would end up causing me unforgiving pain with every movement I make, permanently, otherwise known as forever.
July 26, 2013: Try Navelbine/Herceptin. Body too weak after surgery and transfusion. Fever. CEA: Normal.
August 16, 2016: second dose Navelbine/Herceptin; CEA: Normal. Will skip doses. Watching and waiting.
September 2013: NED, Herceptin only. CEA: Normal. Started Arimidex.
October-November 2013: NED. Herceptin and Arimidex. CEA, CA125, 15-3: Normal.
December 2013: Something brewing. PET lights up on little spot on liver; CEA upward trend, just outside normal. PET and triphasic liver scan confirm Little Met. Restart Perjeta with Herceptin, stay on Arimidex. Genomic sequencing completed for future treatments, if necessary.
January 2014: Ablate Little Met on the 6th. Happy New Year.
March 2014: Brain MRI: clear. PET/CT reveal liver mets return; new lung mets. This is not funny.
March 2014: BEGIN TRIAL #10-005 A(11)-Temsirolimus plus Neratinib.
April 2014: Genomic testing indicated they could work, they did not. Very strange drug combo for me, felt weird.
April 2014: Started Navelbine and Herceptin. Needed something tried and true, but had significant progression.
June 2014: Doxil and Herceptin.
July 2014: Progression. Got nothing out of it. Brain: NED.
July 2014: Add integrative medical hematologist-oncologist to my team. Begin supplements. These are tumor-busting, immune system boosters. Add glutathione, lysine and taurine IV infusions every three weeks.
July 2014: Begin Gemzar, Herceptin & Perjeta. Happy.
August 2014: ECHO perfect.
January 2015: Begin weekly Vitamin D Analog infusions. 25 mcg. via port.
February 2015: CT: stable.
April 2015: Gem working, but not 100%. Looking into immunotherapy. Finally, treatments for the 21st century!
April 2015: Penn Medicine. Dendritic cell immunotherapy.
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Old 10-08-2012, 04:27 PM   #2
jacqueline1102
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Join Date: Apr 2012
Posts: 183
Re: Herceptin/Perjeta?

Hello Karen,

I recently posted to another woman's message who is on the perjeta and herceptin combo. Last October I was diagnosed with inflammatory breast cancer stage IV. I had one liver spot but it was huge (4.6 cm) Eventually it shrunk to .7 x .9. When Perjeta and Herceptin was combined in August the spot is now .6 mm. I won't get scanned again until mid January. After 4 infusions my only real side effect is mild diarrhea for about 3-4 days. I continue to work fulltime, go to the gym, and just enjoy my husband, family and friends. We shall see. Feel free to pm anytime. I feel good. Drink lots of water because it just seems that Herceptin dries me out. Also, the tummy grumbles for a few days after the infusion so stay away from the spicy food. I hope this helps.

Take care,

Jackie
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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 10-08-2012, 05:05 PM   #3
KayeR
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Join Date: Apr 2012
Location: Maryland
Posts: 17
Re: Herceptin/Perjeta?

Hi. I'm the one that Jackie responded to earlier about this combo. I'm getting ready to start Perjeta Wednesday and I've been on Herceptin since last March. I'm really hoping that this combo does the trick for me as I do not wish to start chemo.
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New Years Eve 1999 - found lump in breast
1/2000 - diagnosed with BC (age 36), .9 cm, 1 out of 9 nodes, Er and Her 2 positive (at time of diagnosis, herceptin wasn't available for stage II)
4 rounds of AC and tamoxifen for 5 years.
11.5 years later.....mets to lungs. ER and Her 2 positive
8/2011 - Tamoxifen, Zoladex
3/2012 - tamoxifen, Zoladex and Herceptin
6/2012 - scan showed stability and some reduction
9/2012 minus tamoxifen add Femara. (Due to increase of symptoms) Still on Zoladex and Herceptin
10/2012 Adding Perjeta. Continuing with Herceptin and Zoladex
11/2102 Added taxol due to percardial effusion
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