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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
__________________
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 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.
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Amy
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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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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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