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08-25-2012, 09:28 AM
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#1
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Senior Member
Join Date: Jan 2008
Location: Evergreen, Colorado
Posts: 454
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Another Member on TDM-1
Hi gang,
It has been a while since I've posted as I was very busy enjoying the summer off treatment. (yea...Abraxane) Unfortunately, with my scan in mid-July, NED must have also decided to take a vacation. I hope he hasn't gone far.
So, I scrambled to jump through all of the hoops to get into a TDM-1 trial. I was recently accepted into a Phase II trial at the University of Colorado that involves Taxol + TDM-1 and a randomized arm for Perjeta. I was not randomized into the perjta arm. (rats) Oh well....I will take what I can get.
Began treatment yesterday. It was a long, long day as it was both learning the process as well as treatment. My mom flew into Denver for support and spent the entire day with me.
I continue to feel so blessed. I've had so much support as KDR from the site took the time to walk me through her experiences, family, friends. Thank you, thank you.
So far so good on Saturday morning, no major side effects just yet. Only day 2, but remaining optimistic.
So....I will keep you all posted and of course would love to pay it forward if anyone else is considering on of these TDM-1 trials. Sure hope the FDA approves so we don't have to use trials and compassionite use as our only means of gaining access. It took a month for me to get into the trial, which worked pretty well as there is a 21 day wash out period. (talk about anxiety provoking)
More good news to come!!! I am just sure of it!!!
Lori
__________________
2007
Oct - Diagnosed - Stage IV 5 c.m. IDC - Left Side er/pr- Her2+++ Node + 2/14 - Single Liver Met Double Mastectomy Nov - Begin T+H 2008
Feb-Complete 6 cycles- T&H- NED
March - Continue - Herceptin Only
April - Rads for 6 weeks
2009
Continue Herceptin - Continue NED
April - Recurrance- 3 cm. Liver Met
May - Cryosurgery
June - November - Abraxane + Herceptin
Aug - PET/CT - CTC = 0 Back to NED
2010
January - Continue NED
July - Recurrance - 3 cm Liver Met CTC=1
August - Cryosurgery #2
August - November Navelbine
November - Back to NED - End Navelbine
2011
Feb - Recur - 4 cm Liver Met - Same Left Lobe
March Surgery it is -Couldn't get a clean margin
July - Confirmed continued liver involvement
August - Begin Herceptin + Tykerb
October - Mixed results from H+T
Add Abraxane + H + T - Nov - April
2012
January PET Scan - It's working!!
April - Back to NED
July - Recurrance
August - Begin TDM-1 Trial (Taxol + TDM-1)
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08-25-2012, 09:55 AM
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#2
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Senior Member
Join Date: Feb 2007
Location: Paris, France
Posts: 858
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Re: Another Member on TDM-1
Oh Lori, I am so sorry to read that the mets are back but once more you are going to get rid of them with your new combo! i am so happy you are able to try TDM1 and also happy that even with Taxol you are feeling OK. Ned is on his way back...Hugs. Michka
__________________
08.2006 3 cm IDC Stage 2-3, HER2 3+ ER+90% PR 20%
FEC, Taxol+ Herceptin, Mastectomy, Radiation, Herceptin 1 year followed by Tykerb 1 year,Aromasin /Faslodex
12.2010 Mets to liver,Herceptin+Tykerb
03.2011 Liver resection ER+70% PR-
04.2011 Herceptin+Navelbine+750mg Tykerb
06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum
11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin
02.2012 Mets to lungs, nodes, liver
04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
04.2016 Liver mets. Back on Kadcyla
08.2016 Kadcyla stopped working. mets to liver lungs bones
09.2016 Biopsy to liver. no more HER2, still ER+
09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife
01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere
02.2017 30 micro mets to brain breathing getting worse and worse
04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven
06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
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08-25-2012, 03:31 PM
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#3
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Senior Member
Join Date: Aug 2010
Location: New York, New York
Posts: 1,580
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Re: Another Member on TDM-1
Lori,
I hope your infusion went well. The first day is very long (with observation periods between drugs).
I love that yet another fighter has gotten the opportunity to get on the T-DM1. I too heard that it should be available for all by December. (Someone here mentioned September). Best of luck to you, friend. Truly believe we are on our way to great things.
Karen
__________________
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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08-25-2012, 04:35 PM
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#4
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Senior Member
Join Date: Apr 2011
Location: Michigan
Posts: 1,173
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Re: Another Member on TDM-1
Your an inspiration for sure! Hope all goes well. Gods blessings to you and I will keep you in my prayers.
__________________
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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08-28-2012, 10:10 PM
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#5
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Senior Member
Join Date: Jan 2010
Location: Thousand Oaks, California.
Posts: 199
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Re: Another Member on TDM-1
Hi Lori,
I am also on TDM-1. It seems to be working for me, I have been having a few lung issues, but I will know by the end of the week, exactly where I stand.
Good luck
Fern
__________________
Breastfeeding when diagnosed with Her2+ May 2008
Oct 2008 Double mastectomy 22/28 lymph nodes positive
Decline chemotherapy (decision I regret)
Nov 2009 Mets to lungs and bones.
Dec 2009 Start Taxotere and Herceptin, T1, T3 heal completely and lungs are clear, T2 and first rib have lytic lesions. First rib becomes sclerotic. Considered stable.
May 2011, Onc calls progression and I cross over from comparison arm of clinical trial to TDM-1
Brain scan in Sept 2011 showed small tumor in right cerebellum, did Novalis radiation.
Feb 2013 < 1cm tumor in left frontal lobe. Did Novalis in March and latest scan shows no sign of brain metastasis.
Aug 2013 did 36th round of TDM-1 Due to TDM-1 side effects, shortness of breath, and difficulty getting my balance when getting out of bed, agreed with my oncologist to stop TDM-1.
Took a six week break, bone scan showed small uptake on left first rib. CT showed hypodensities in liver (too small to biopsy) and small nodule in lungs (mediastinal).
Started Navelbine weekly. Did one round with Herceptin.
Skipped next 2 rounds, due to neutropenia. Next chemo 7th Nov - have had 3 Neupogen shots, so WBC should look better... Did not tolerate Navelbine well.
December 2013 scans show no sign of active cancer.
March 2014 - currently only on Herceptin - brain MRI clear, PET/CT two nodules in right lung show uptake
May 2014 - stop Herceptin.
Sept 22, 2014 Brain MRI clear :) PET/CT Progression in lungs.
Sept 2014, Xeloda, Tykerb and Herceptin.
Nov 2014 - Decide to take a break from all treatment.
May 2015 - Brain met radiated with Novalis
July 2015 - Have progression in right lung.
Sept 2015 - Perjeta and Herceptin alone after a 9 month break from all treatment.
Nov 2015 - Thoracentesis 1500ml removed from right lung.
Dec 2015 - Two tiny 1mm brain mets radiated in right cerebellum.
Feb 2016 - Thoracentesis 2200ml drained from right lung
Feb 2016 - Stopped Perjeta and Herceptin and started back on Kadcyla as I had no previous progression on it. After 1 cycle of Kadcyla markers begin to drop. On second cycle add Keytruda.
March 2016 - Thoracentesis 1650ml drained from right lung.
April 2016 – Thoracentesis 1500 ml drained from right lung.
June 2016 – CT scan shows progression in right lung, as well as moderate pleural effusion requiring Thoracentesis.
June 2016 – Decide to stop Keytruda, and will do chemosensitivity test through Rational Therapeutics. Plan to continue on Kadcyla for next two cycles.
July 2016 - Start weekly Abraxane with Herceptin. WBRT with hippocampal sparing, Taking Namenda. 15 sessions over 3 weeks.
Aug - Dec 2016 - 2 infusions of Navelbine, very hard on my body and still dealing with anasarca (generalized edema) 1 infusion of Havalen
My doctor wants to put me on hospice.
Dec 23rd 2016 - I am granted compassionate use of Neratanib.
May 31st 2017 - still on Neratinib, feeling good.
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08-29-2012, 04:07 AM
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#6
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Senior Member
Join Date: Apr 2008
Posts: 1,477
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Re: Another Member on TDM-1
Very glad you were able to get into the trial. Stay strong and optimistic (you sound both!) and take care of yourself.
karen z
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08-29-2012, 10:42 AM
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#7
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Senior Member
Join Date: Sep 2010
Location: Shelby, N.C.
Posts: 114
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Re: Another Member on TDM-1
My wife Barb started TDM-1 expanded access yesterday with no problems so far. Just talked to her a few minutes ago and shes fine.
__________________
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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08-29-2012, 07:37 PM
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#8
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Senior Member
Join Date: Jan 2008
Location: Evergreen, Colorado
Posts: 454
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Re: Another Member on TDM-1
Mike,
That is fantastic news on all fronts. I watched your posts and grew more frustrated on your behalf with each additional "issue". I am so impressed that you knocked down every single obstacle. Also thrilled to hear Barb is feeling well.
Only good news from here on out!!!
You are a good man with a wonderful family. Need I say more??? Lori
__________________
2007
Oct - Diagnosed - Stage IV 5 c.m. IDC - Left Side er/pr- Her2+++ Node + 2/14 - Single Liver Met Double Mastectomy Nov - Begin T+H 2008
Feb-Complete 6 cycles- T&H- NED
March - Continue - Herceptin Only
April - Rads for 6 weeks
2009
Continue Herceptin - Continue NED
April - Recurrance- 3 cm. Liver Met
May - Cryosurgery
June - November - Abraxane + Herceptin
Aug - PET/CT - CTC = 0 Back to NED
2010
January - Continue NED
July - Recurrance - 3 cm Liver Met CTC=1
August - Cryosurgery #2
August - November Navelbine
November - Back to NED - End Navelbine
2011
Feb - Recur - 4 cm Liver Met - Same Left Lobe
March Surgery it is -Couldn't get a clean margin
July - Confirmed continued liver involvement
August - Begin Herceptin + Tykerb
October - Mixed results from H+T
Add Abraxane + H + T - Nov - April
2012
January PET Scan - It's working!!
April - Back to NED
July - Recurrance
August - Begin TDM-1 Trial (Taxol + TDM-1)
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