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04-25-2011, 07:53 PM
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#1
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Senior Member
Join Date: Aug 2010
Location: New York, New York
Posts: 1,580
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Anyone Doing Traveling For T-DM1 In Fairfax?
If so, I'd like your input on the facility and doctors there. It is the closest open access site to me (NYC). Otherwise it's a toss of the dice with trials (will I, won't I get it).
Thanks
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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04-25-2011, 11:59 PM
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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: Anyone Doing Traveling For T-DM1 In Fairfax?
Hi Karen
I understand very well that you are also investigating T-DM1. You are right to look at every option and we know that TDM1 worked well on liver mets for some ladies here. I hope you will have positive answers about Fairfax.
Then you can choose your treatment. I just hope it will go fast getting the information. It drove me crazy running after doctors and doing paperwork.
I am keeping you in my thoughts. 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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04-26-2011, 05:36 AM
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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: Anyone Doing Traveling For T-DM1 In Fairfax?
Thanks, Michka. You are always so considerate and loving. I'm wishing YOU a very smooth recovery, too.
Love
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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04-26-2011, 06:39 AM
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#4
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Senior Member
Join Date: Jan 2008
Location: Evergreen, Colorado
Posts: 454
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Re: Anyone Doing Traveling For T-DM1 In Fairfax?
Dear Karen,
So sorry to hear about the mets to your liver. I fully appreciate the challenge of figuring out the next steps.
As you can see via my treatment history, I tried cryotherapy + chemo which bought me time but didn't fully resolve the issue. Recently tried liver resection and I am keeping my fingers crossed that this works. The resection while very doable, was major surgery and not a procedure to be taken lightly.
So.....I am keeping my fingers crossed that you can gain access to TDM-1 and achieve the same results as Chrisy!!! It would be such a major coup for everyone on the site.
Wishing you strength (and sanity) as you weave your way through all of the administrative tasks required to gain access.
Hugs.....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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04-27-2011, 12:38 PM
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#5
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Senior Member
Join Date: Jan 2006
Location: ALEXANDRIA, VA
Posts: 40
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Re: Anyone Doing Traveling For T-DM1 In Fairfax?
Hi... I have not posted anything in a very long time but still try to visit the site. I did start T-DM1 trial in Fairfax as my Dr is a part of that group. I had amazing results after the first treatment. I started this trial because the last 3 regiments did not work and the one I did before starting the trial did work some but you can only do 6 treatment.. A/C Hercp. When I got my first Pet back in Dec 2010 it was NED... I have not been NED in years. This go around I had over 40 nodules in both lungs and a Pec area mass that had been growing off and on since 2007 .. The pec area literally melted away almost entirely after one treatment and by the 2nd treatment it was entirely gone... So for those thinking about or trying to get on the trial I would recommend it. I still suffer with sides effects as I have been stage 4 since I was diagnosed in OCT 04; This site is a real inspiration to me and will continue to be. I have no pc at home so I can only go online at work ...
Take care,
Debbie S
__________________
dx stage 4 ... 11/04
3.2 cm mass breast & liver mets..
her2 +++ ; er- ; pr -;
11/04 treated with hercp, taxol & carboplatin - every 3 wks
3/05 ned - stopped chemo; hercp only
5/05 reoccurence left breast
6/05 added navelbiene w/ hercp every other wk
7/05 mascetomy
12/05 ned ; same regiment- every 3 wks
3/06 & 7/06 ned
9/06 stopped navelbiene.. hercp only.. every 3 wks;
10/06 pet scan shows positive lymph node in pec
12/06 PET no change;
4/07 scan showed 4 abnormal nodes in right pec area ... these have increased in activity since last scan... will start back on weekly navelbeine & hercp
7/07 PET done ..this time it showed new nodules in both right & left lung area as well as increased activity in pec area..
8/07 started Taxol & Carboplatin with Hercp every 3 wks
10/07 PET done ...Great Report ... NED ....
11/07 continue with Hercp every 3 wks & do Taxol & Carboplatin every 6 wks
4/09 still on same regiment; 1 positive node in left lung and right pec area
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04-27-2011, 12:47 PM
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#6
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: Anyone Doing Traveling For T-DM1 In Fairfax?
Debbie
brilliant news. Thanks for letting us know this good info about T-DM1
Ellie
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04-27-2011, 01:25 PM
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#7
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Senior Member
Join Date: Nov 2010
Location: PA
Posts: 297
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Re: Anyone Doing Traveling For T-DM1 In Fairfax?
Debbie, you really have been through alot and you are still fighting this dreadful disease. What an inspiration you are. I hope that T-DM1 does the trick and you will be ned. Mary L
__________________
Mary L from PA Diag: Oct 2003 w/6mm mass, IDC grade III ductal carcinoma in-situ, IBC stage IIIB. tx A/C followed by Taxotere(only able to have 2 tx, allergic), mastectomy, 3 0ut of 7 positive nodes. 35 rads. Recurrence 9 months later, skin mets to mastectomy site. Tx Carboplatin/Herceptin. Stayed on Herceptin almost 5 years, had 3 more recurrences when I had to stop Herceptin due to my ejection fraction getting too low. Herceptin stopped and ned 3 years in Oct. 2010.
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