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09-03-2008, 03:47 PM
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#1
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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Ideas? Put your propellers on - (Chrisy I need you)
A very dear friend of mine is having progression. All of her mets are in the bones. They can't get anything to hold her for more than a few months at a time.
She has been on Abraxane/Avastin for the last 3 months. She has already been on Herceptin, Xeloda, Tykerb, and all the other normal regimines that we have all had.
(I don't know if they have tried zometa, navelbine or gemzar...)
Herceptin and Tykerb together gained her very little, and was hard on her heart.
Her doc decided today - no more Avastin. She is on oxycontin for bone pain (has been on it for over a year), she is in a wheelchair much of the time because some of her bone mets has been in hip bones, and caused hip breakage about 3-4 years ago. She had surgery/hip replacement w/ pins, but that hip has continued to be weak. She has constant and fairly debilitating fatigue and nausea.
Her hubby tells me that mentally she is exhausted... and not terribly inclined to keep looking for options, but when I saw her today, she was interested in me asking my friends here about ideas.
We are close enough that she can go to Houston - to MDA, which she has been to in the past; or to Baylor College Breast Center (Dr. Kent Osborne and associates).
Chrisy - based on your experience, could she possibly qualify for the trial you are on? Do you know where in Texas it is open? I forget what it's real name is - as I call it Run DMC...
Thanks everybody!
Brenda
__________________
Brenda
NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)
Nov'03~ dX stage 2B
Dec'03~ Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~ Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~ micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~ micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg
Apr'07~ MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~ Started Tykerb/Xeloda, no WBR for now
June'07~ MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~ MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~ PET/CT & MRI show NED
Apr'08~ scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~ MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~ dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~ Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~ new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~ new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~ 25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.
"I would rather be anecdotally alive than statistically dead."
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09-03-2008, 04:30 PM
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#2
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Hi Hutchi
Sorry to hear about your friend's progression. Like we needed another reminder that canser sucks.
The run DMC drug is officially called Trastuzumab-MCC-DM1. I call it run DMC because it is WAY shorter and because it makes the DaMn Cancer run.
The phase II trial I was in is closed, but excluded anyone with more than 3 prior chemos so your friend may not have been able to qualify anyway.
There is a new trial which is supposed to be opening which is looking for participants with lots of chemo, multiple herceptin regimes and tykerb and xeloda. So sounds like she would definitely be eligible for this one.
I've attached a link to it - it doesn't say where it's offered but the contact name is there.
http://clinicaltrials.gov/ct2/show/NCT00679211
It requires radiologically measurable disease - which sometimes is an issue with bones but I'll bet if her doctor pushed they would find a way. I know that one of the ladies here had bone mets and was on one of the studies (maybe the Phase I). It worked for her, by the way.
I think this trial would definitely be worth doing - even with multiple "failures"of her2 targeted therapies. Dm1 can still work because it works differently - it's only using the Herceptin to find the target, then the DM1 does the cancer killing. It's not as "benign" as Tykerb or Herceptin alone in terms of side effects, but it would be way easier than any of the chemos and would seem like a vacation after what she's been doing.
I know there will be plenty of other ideas out there...
Take care
Chris
__________________
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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09-03-2008, 05:16 PM
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#3
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Senior Member
Join Date: Jul 2008
Posts: 186
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The following cancer centers in Texas all participated in the Trastuzumab-MCC-DM1 phase II evaluation. It is my understanding that this trial is no longer enrolling patients. However I do believe that these same centers will likely be involved in a new phase II evaluation.
More detailed particulars pertaining to this trial can be obtained by use of this link.
http://www.clinicaltrials.gov/ct2/show/NCT00679211?term=dm1&rank=3
List of centers with contact information that are expected to participate:
Cancer Specialists of South Texas
Corpus Christi, Texas, United States, 78412
Contact: Katrina Powell 361-993-3456 kpowell@corpuschristicancer.com
El Paso Cancer Treatment Ctr
El Paso, Texas, United States, 79915
Contact: Linda Krasowski 915-595-6886 linda.krasowski@usoncology.com
Texas Oncology, P.A.
Bedford, Texas, United States, 76022
Contact: Cynthia Schoenfeldt 817-359-9033 cynthia.schoenfeldt@usoncology.com
Texas Oncology Cancer Center
Austin, Texas, United States, 78731
Contact: Gabriella Iannone 512-427-9467 gabriella.iannone@usoncology.com
Texas Oncology PA
Fort Worth, Texas, United States, 76104
Contact: Nori Sullivan 817-850-2000 nori.sullivan@USOncology.com
Texas Oncology, P.A.
Dallas, Texas, United States, 75231-4400
Contact: Myrna Williamson 214-739-4175 myrna.williamson@usoncology.com
Sammons Cancer Center
Dallas, Texas, United States, 75246
Contact: Marnie Fisher 214-370-1000 marnie.fisher@usoncology.com
Texas Oncology, P.A.
Houston, Texas, United States, 77024-2305
Contact: Dorothy Caldwell 713-67-1722 dorothy.caldwell@usoncology.com
US Oncology
Midland, Texas, United States, 79701
Contact: Mary Williams 432-688-0821 Mary.Williams2@USOncology.com
USO
Dallas, Texas, United States, 75230-2510
Contact: Rhonda Waldrop 972-566-7790 rhonda.waldrop@usoncology.com
USO - Tyler Cancer Ctr
Tyler, Texas, United States, 75702
Contact: Linda Dunklin 903-579-9800 linda.dunklin@USOncology.com
Waco Cancer Care & Research Ce
Waco, Texas, United States, 76712
Contact: Theresa Schroeder 254-399-0741 theresa.schroeder@usoncology.com
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09-03-2008, 05:35 PM
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#4
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Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
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Hucklebuck, you and your friend will be in my thoughts and prayers
__________________
For Nicola
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09-03-2008, 05:38 PM
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#5
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Senior Member
Join Date: Dec 2005
Location: indianapolis, indiana
Posts: 1,544
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Adding prayers to the others for your friend!
__________________
dxd 9-04, lumpectomy,
st 1, gr 3, er,pr-, her2 +,
2 tac,33 rads,6 cmf
1 yr herceptin,
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09-03-2008, 07:12 PM
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#6
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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Thanks everyone, Chrisy and Schoonder especially! I will pass all of your VERY valuable info along to her hubby, tuit de suite!
__________________
Brenda
NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)
Nov'03~ dX stage 2B
Dec'03~ Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~ Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~ micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~ micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg
Apr'07~ MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~ Started Tykerb/Xeloda, no WBR for now
June'07~ MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~ MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~ PET/CT & MRI show NED
Apr'08~ scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~ MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~ dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~ Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~ new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~ new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~ 25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.
"I would rather be anecdotally alive than statistically dead."
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09-03-2008, 10:30 PM
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#7
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Senior Member
Join Date: Jun 2006
Location: South Florida
Posts: 477
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Hi Brenda,
My bones have been a problem too. I have been on Zometa for 2 1/2 years. I had luck with Gemzar (hard on the counts) and the side effects weren't bad. I was on for 6 months and got about a year of response. Next up for me is Navalbine and Carbo most likely. Not sure how I will do on the Carbo had to stop after two doses when it was combined with Abraxane.
I wish your friend the best and pray that she can get this under control soon.
Carolyn
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09-04-2008, 08:30 AM
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#8
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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thanks for the info and thoughts Carolyn~
__________________
Brenda
NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)
Nov'03~ dX stage 2B
Dec'03~ Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~ Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~ micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~ micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg
Apr'07~ MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~ Started Tykerb/Xeloda, no WBR for now
June'07~ MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~ MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~ PET/CT & MRI show NED
Apr'08~ scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~ MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~ dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~ Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~ new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~ new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~ 25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.
"I would rather be anecdotally alive than statistically dead."
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09-04-2008, 02:12 PM
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#9
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Brenda sorry if this has been mentioned already but a friend of mine is taking megace (I think) for her bone mets and is doing well so far on it. if your friend has'nt had this it may be another option. My best wishes to her and hope she finds something to help asap!
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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