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Old 06-19-2012, 06:05 AM   #1
KDR
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Smile Rally Today For T-DM1 *BOSTON, MA*

Phil McCartin, staunch advocate of T-DM1, his wife, Lorraine, and fellow survivors and Cancer Fighters will spearhead a rally to get the FDA to LISTEN. Here's his email:

Many were excited when T DM-1 was the " Star " of the Clinical Oncology Convention last week. Congratulated us. But they did not realize that T DM-1 is NOT APPROVED ! This slower FDA could take ANOTHER YEAR TO APPROVE !! Many Thousands of Stage IV Survivors CANNOT GET IT ! That is why we are Demonstrating outside BIO : The Intern'l Biotech Convention in Boston. Tuesday , June 19th, Boston Convention and Exhibition Ctr. 415 Summer St., 4 blocks or so behind So. Station. A " Rolling Demo " starting at 8-11:30 AM. This FDA will be there , Janet Woodcock, FDA head of CDER, one of Dr. Pazdurs staunchest defenders. She will lead " Town halls " on ' speeding up drug approvals " Ridiculous, and tragic.
So, come Support Us !
Lorraine and Peter , will be on WBZ radio Monday night, 9-10 PM . dan reas' " Nightside " talk radio. 1030 AM. broadcasts in 37 states. cbsradio.com on internet.
Perfect timing. Our first hour -long, in- depth interview . Tune in, Call In ! Pass The Word !


Karen
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World Trade Center Survivor (56th Floor/North Tower) 12 years and still just like yesterday;
Dxd: June 2010, liver mets. ER-/PR+10%; HER2+++. Euthyroid via RAI, June 2001.
July 2010: Begin Taxol/Herceptin. Eliminate sugar from diet.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Discontinue 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.
June-October 2011: CEA in normal range. PET/CT stable; no new lesions.
November 2011: Progression in liver. Previous tumors remain eradicated.
Test Results on 09-093 Trial (scans every six weeks, bloodwork and infusions weekly):
December 2011: Begin trial: 09-093 Taxol, MCC-DM1 (T-DM1), Perjeta. Brain MRI: clear.
January 2012: NED. Liver mets: good riddance!
March 2012: NED. Taxol removed from regimen. Continue Protocol of T-DM1 weekly and Perjeta every 3 weeks.
May 2012: NED.
June 2012: Brain MRI: clear.
June 2012: NED.
August 2012: NED.
September 2012: NED.
October 2012: NED.
November 2012: NED.
December 2012: 09-093 trial concluded; enter trial extension, 09-037. CT, Brain MRI, bone scan: clear. NED.
January 2013: NED.
March 2013: NED.
June 2013: Brain MRI: clear. CEA upticking; CT shows new met on liver.
July 3, 2013: Met ablated, but major sloppy surgical mistake (major hemothorax: causing emergency thoracotomy, lung surgery, collapsed lung, chest tube, rib rearrangement, transfusion after 3.5 liter blood loss); operation incomplete; plan to begin Navelbine/Herceptin later in month.
July 26, 2013: One dose Navelbine/Herceptin; too early after combined surgeries. 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 Protocol #10-005 A(11)-Temsirolimus plus Neratinib.
April 2014: Off the "customized drugs." 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.
June 2014: Doxil and Herceptin. Significant progression on former treatment. Daughter of The Red Devil, dance!
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Old 06-19-2012, 06:27 AM   #2
karen z
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Re: Rally Today For T-DM1 *BOSTON, MA*

Way to go!
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Old 06-19-2012, 07:40 AM   #3
Mtngrl
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Re: Rally Today For T-DM1 *BOSTON, MA*

I am out of town, but I passed this on to my in-person support group in Boston. Thanks for letting us know.
__________________
Amy
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4/19/11 Diagnosed invasive ductal carcinoma; 2.3 cm tumor, 1 axillary lymph node
HER-2+++, weakly ER+ (10%)
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
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 No more Abraxane. 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 (mediastinal lymph nodes)/spine (one vertebra)
5/22/12 Stopped taking Arimidex; stay on Herceptin
6/5/12 CT scan
shows everything stable
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
8/1/12 CT scan--stable.
9/24/12 CT scan--No new mets. Everything stable.
11/19/12-Stable CT scan
12/13/12 CT Scan--NED

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 (but it says cancer cells are "scant").
4/30/13 Began 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 got 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. I have an inhaler for that now.
2/18/14 PET scan shows a new lesion and newly active lymph node in lung, 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, though.
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Old 06-20-2012, 06:45 PM   #4
phil
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Re: Rally Today For T-DM1 *BOSTON, MA*

what a week. protesting the FDA where thye gather , at Bio convention was ahit !! All kinds of media exposure. cbsradio.com at beginning of week. boston globe story today, and boston.com video. Which might be the best of all < I dont know . Tonight Emily Rooney interviewed Lorraine on PBS " greater Boston ". tekll her and globe what you think, ask them to pursue story ... Boston business journal yesterday. METRO which is free , all over Boston subways ...i thinka pharma mag, and State House News is coming ! ! Send links to your legislators. Are they supporting overhaul of FDA ? Sen. Hagans TREAT ACT ? Congress FAST ACT , HR 4132 ? Ask them where do they stand publically ? With Stage IV ? Or Not ?
We are exhausted, but exhilirated . let me know if you see youtube video of BIO , the globe video doesnt even begin to capture the bullhorn blasts ! Every head at the conv. turned as i ranted ! With 2 years of fury !! Tomorow is chemo....fight on !
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Old 06-21-2012, 10:40 AM   #5
7andcounting
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Re: Rally Today For T-DM1 *BOSTON, MA*

Phil, you are a hero! You and Lorraine could just enjoy getting TDM-1 and keep quiet, but No!! you fight on for all us. I wish I was in Boston and could be there in person to make my voice heard. Thank you, Thank you, Thank you!

Maybe ONE key person will hear you and their conscience will tell them to do something to help us stage 4 women.

........with much power comes much responsibility.

The stats prove TDM-1 is a great drug....it kills cancer cells AND a person can actually have quality of life. Such a novel concept. Our FDA feels we stage 4 women should continue to suffer....they could make a huge difference in so many women's lives, if they would approve this drug.
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Old 06-23-2012, 07:02 AM   #6
phil
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Re: Rally Today For T-DM1 *BOSTON, MA*

we now have a website, http://stageivsurvivor.webs.com , or survivors.webs.com, im not sure. Check it out !
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