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Old 05-08-2012, 09:47 AM   #21
phil
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Re: TDM1 EAP - Good news for those in TDM1 EAP study who need to travel

The best trial in my opinion is at Sloan in NY, Farber in Boston, where t dm-1 is given in low doses , w/ taxol unfortunately at first. If you respond , they drop taxol. And 50/50 chance of getting pertuzumab too. We have seen quick responses in folks who highly overexpresss her2 ( FISH scale over 3.0 ), whether they get pert and taxol w t dm-1 , or no pert , just taxol/t dm-1 together . t dm-1 is the main factor, and in this trial everyone gets it !
The other trial that I know something about is Theresa, you have to have progressed on at least 2 previous her2 targeted therapies, herceptin, tykerb would count . In theresa 2 out of 3 get t dm-1, but the third gets " physicians best choice ". So, thats a gamble that you might not want to take if your cancer is rapidly progressing. Lorraines was, and she got into access before they closed it.
Have you had a taxane ? , like taxol ?or taxotere, abraxane ? Some docs might want you to try those first. Bad s/e, but effective , and t dm-1 should be out w/in a yr , or less.
Another option is compassionate use. Esp if youve progressed on a taxane and tykerb, definitely. Gen. top execs have been very rigid about it , denying it 100 %, but now that the main trial " Emilia " , that This FDA forced them to finish before approval would even be considered, is done, Gen. may ease up . Nothing to lose, be ready to go public if they give you the runaround.
Most docs are skittish about comp. use , so most go at it half -heartedly, dealing w/ Big Pharma isnt something they relish. So, you have to push docs . This FDA will stand on the sideline, let you bargain w the co., then ok it , if co. does. What a racket our govt is ! Start w/ calling Genentech, 888-662-6728, ask about trials , good luck !
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Old 08-28-2012, 03:52 PM   #22
StephN
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Location: Misty woods of WA State
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Re: TDM1 EAP - Good news for those in TDM1 EAP study who need to travel

There is a new round of EAP sites opening beginning now at the end of August. Check the Sticky above for the lastest updates.
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"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 08-28-2012, 05:50 PM   #23
jacqueline1102
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Re: TDM1 EAP - Good news for those in TDM1 EAP study who need to travel

Hello all,

I live in Indianapolis, Indiana which is about 45 minutes south of Lafayette, Indiana (home to Purdue University). If you have any questions please let me know. I am sure the study will provide housing and such but I thought that if you needed any information about the area or just a chat, please let me know. Lafayette is in the middle of no where as far as the state goes but it is a nice little city. Low crime with the exception of the university students engaging in a little underage drinking. If you fly into the Indy airport you will notice that the whole process is rather easy and not very stressful at all, certainly in comparison to something like O'Hare.

Please let me know if any of you are going to participate in the study.

Take care,

Jackie
__________________
10/11 IBC Stage IV; 1 liver met 4.6 cm.
10/11-2/12 TCH for 6 rounds
3/12 Right MRM
5/12-7/12 33 Radiation treatments
8/1/12 Started Perjeta along with the Herceptin
10/12 Scans said NED for first time
5/15 UWSeattle Vaccine Trial 3 months
12/16 Scans still show NED. Herceptin and Perjeta continue indef.
8/17 Taken off Perjeta;staying on Herceptin. Still NEAD.
3/18 Still NEAD
8/19 Now on Subcutaneous Herceptin
10/21 Remain on Subcutaneous Herceptin (Hylecta)
11/21 CT showed possible lung mets. Was told to wait and see until scan
1/22 CT shows continued growth
03/22 Lung Biopsy said sample was too small but nodules keep growing and IR is convinced that it is indeed cancer
04/22 Oncologist referred for consult for a transbronchial biopsy. This does not sound pleasant
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Old 08-28-2012, 09:38 PM   #24
hutchibk
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Re: TDM1 EAP - Good news for those in TDM1 EAP study who need to travel

I travel Texas to Denver every 3 wks for compassioate use, and the so far the study has not provided housing (a yr and a half). So, I fly in and out the same day.
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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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