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06-26-2008, 08:51 AM
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#1
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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MCC-DM-1 trial closed
Just to let you know, the MCC-DM1 trial is closed at Sloan-Kettering, according to the office of the trial study doctor, Dr. Modi.
So that's one less option I have for treating my lung nodule.
I'm going to follow up because I think that the trial involves recruiting patients in waves and the trial may open and close.
Barbara H told me that when she first tried to get into the trial in her area it was closed and then reopened a few months later and she was able to enroll.
__________________
Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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06-26-2008, 08:57 AM
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#2
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Senior Member
Join Date: Sep 2005
Posts: 556
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Joan,
One of our memebrs got cyberknife for her single mediastinal node. Maybe that is an option to consider.
Julie
__________________
Diagnosed in Sept 2004 while pregnant with the second child. Stage 3b, tumor 4.5cm, 4 auxillary and supraclav node positive. Her2+++ FISH 9.4 and er-,pr-.
Had dose dense neoadjuvant AC,Taxol then mastectomy,radiation+xeloda+Herceptin.
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06-26-2008, 09:10 AM
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#3
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Senior Member
Join Date: Feb 2005
Location: Wisconsin
Posts: 159
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Joan--
Are you considering Tykerb?
Val
__________________
BLOG:
http://valleygirlvnp.blogspot.com/
Dx 11/04, Age 42, ER-/PR-, HER2+++
3 months weekly Herceptin, Taxol. Carboplatin
Significant tumor shrinkage
Mastectomy 3/05; Stage 3b, 9 cm tumor, 5/8+ nodes
3 more months weekly Herceptin, Taxol. Carboplatin
7/05 30 radiation treatments, IMRT planning approach
Started 1 year of Herceptin 9/05
9/06 Began quarterly triple doses Herceptin. Brain & breast MRIs semi annually.
* * * * * * * * * * * * * * * * * * * * * * * * * * *
6/08 Right breast, intraductal carcinoma, high nuclear grade associated with comedo necrosis; extensive diffusely involved the entire biopy specimen. ER+, PR-, Her2 unknown at this point, 07/08 mastectomy.
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06-26-2008, 10:19 AM
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#4
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Joan, I think that Joy from our site was the 100th person in the phase II 3 week study. Not sure which one of the several studies you were checking on. They do sometimes open for more people, either at a specific institution or overall.
There may also be other, new trials coming up on this.
__________________
Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial
5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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06-26-2008, 01:11 PM
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#6
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Julie, I believe the cyberknife is the same as stereotatic body radiotherapy. I've checked into that and would be eligible, but that's part of the problem of making up my mind about what to do. I have several options, including Tykerb as Val mentioned.
Chrisy and run to live, thanks for the additional trial info. As it turns out, Sloan will be opening phase II in a few months and they directed me to two local sites that have already opened the second phase. One is actually too far away, but I'm going to check out the other one.
__________________
Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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06-26-2008, 01:57 PM
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#7
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Senior Member
Join Date: Nov 2007
Posts: 210
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where did sloan direct you to...
United States, New JerseySt. Barnabas Health Care Sys Recruiting Livingston, New Jersey, United States, 07039
Contact: Ilda Boholli 973-322-2470 iboholli@sbhcs.com United States,
New YorkEastchester Center/Cancer Care Recruiting Bronx, New York, United States, 10469
Contact: Karen Hoffman 718-732-4029 karen@eastchestercenter.com
New York Oncology Hematology
Recruiting Albany, New York, United States, 12206
Contact: Mary Beth Biette 518-489-0528 mary.biette@usoncology.com
run
Last edited by runtolive; 06-26-2008 at 02:33 PM..
Reason: clarifying previous post
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06-26-2008, 06:40 PM
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#8
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Run,
Sloan directed me to St. Barnabas and to the Bronx.
Ilda Boholli is no longer at St. Barnabas even though she's listed as the contact, and I spoke instead with with Elyce Hirtler. After we spoke she talked to Dr. Michaelson and then called me back to say that the second segment of the trial is closed. That is, the sponsor Genentech met its quota of 100 and surpassed that by 10 for 110 idividuals. So none of the sites will be recruiting now for this part of the trial.
After I spoke to her, Dr. Modi, the study doctor at Sloan-Kettering, called me from some airport somewhere (what a great lady! And really nice, too!). She explained that the second segement of the trial is closed and that in the fall Sloan will be opening another segment but under more strict enrollment criteria. For this segment of the Phase II trial, patients will have had to progressed on Tykerb and Xeloda. As you probably know, the initial recruitment criteria called for progressing while taking only Herceptin.
Since I haven't taken either Tykerb or Xeloda, I would not be eligible, but some of the sisters (or brothers) on the board may want to look into the trial.
The trial is listed on the NIH website and the full copy of the trial shows all the locations where the trial is available.
Thanks much for all your support.
Joan
__________________
Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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06-26-2008, 07:52 PM
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#9
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Senior Member
Join Date: Sep 2005
Location: Newton, MA
Posts: 951
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Phase 1 is closed!! Herceptin MCC DM I trial
Hi,
I had treatment today and asked if phase 1 would be opening again. It is now closed and will not be taking new patients. As far as I know phase 2 is still open.
Barbara H.
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06-27-2008, 03:34 PM
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#10
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Hi Barbara,
Yes, I think Phase II is still open, but it seems to be rolling out in parts as it progresses, and that the parts close and a new one opens.
Joan
__________________
Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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