Finally got in contact with one of the expanded access sites ( thanks Jaynee, Gaelen, and all else who helped seek out this information). It is in Ann Arbor, Michigan.
I have to send them my basic info, they will review it, and determine if I am a candidate. The research nurse I spoke with seems to feel it is highly likely I will qualify, so that is promising.
It is about a six hour drive, or I could fly from Louisville to Detroit, rent a car and drive to Ann Arbor. That might work out better, less hassle. Will think about that, right now, just hoping I qualify for the program.
Best news....drug will be provided at no cost. Minimal insurance involvement, which is huuuuuge relief.
Regorafanib, here I come (maybe)
Regorafanib, here I come (maybe)
Stage IV, April 2009.
Treatments...multiple .
Currently none
"It is well, with my soul"
Treatments...multiple .
Currently none
"It is well, with my soul"
Re: Regorafanib, here I come (maybe)
My beautiful alma mater! If you need any info about the U of M hospital system, please let me know! I did research at the cancer center and my dad goes there from tie to time, so I'm quite familiar with it!
Daughter to George (64)
Dx'ed Jan '11 Stage IV CC liver and peritoneum, KRAS mutant
Folfox
Folfori, Avastin
SIRT
Aug '12- progression in liver, mets to lungs
Oct '12- mets to bone, Regorafenib
Nov '12- Hospice
12/10/12- Became my beautiful angel in heaven
Dx'ed Jan '11 Stage IV CC liver and peritoneum, KRAS mutant
Folfox
Folfori, Avastin
SIRT
Aug '12- progression in liver, mets to lungs
Oct '12- mets to bone, Regorafenib
Nov '12- Hospice
12/10/12- Became my beautiful angel in heaven
-
weisssoccermom
- Posts: 5988
- Joined: Thu May 10, 2007 2:32 pm
- Location: Pacific NW
Re: Regorafanib, here I come (maybe)
Karin,
sending you a pm.
Jaynee
sending you a pm.
Jaynee
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness
-
Jack&KatiesMommy
- Posts: 640
- Joined: Wed Dec 21, 2011 1:08 pm
- Location: Columbus, OH
Re: Regorafanib, here I come (maybe)
Karin
This is such fantastic news. I have been praying for something good for you since your MD Anderson trip. I am so happy for you!!! xxx
This is such fantastic news. I have been praying for something good for you since your MD Anderson trip. I am so happy for you!!! xxx
Cynthia
Mommy to Jack (8) now (18) and Katie (4) now (14)
(My Most Precious Things)
Dx 8/11 Stage IV CRC (liver mets) CEA 2,600+
9/11 Folfiri 2/12: Failed Liver Resection
5/12 HAI pump/removed primary
4/13 Liver Resection
8/13-12/15 (10) RFAs lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new lymph mets lung
05/18: Keytruda (MSS w/Intermediate TMB): NED CEA: 66.4, 39.2, 23.8, 13, 3.5 1.8, 1.0, 2.8 3.9, 5.0, 5.6, 1.5, .8,
Mommy to Jack (8) now (18) and Katie (4) now (14)
(My Most Precious Things)
Dx 8/11 Stage IV CRC (liver mets) CEA 2,600+
9/11 Folfiri 2/12: Failed Liver Resection
5/12 HAI pump/removed primary
4/13 Liver Resection
8/13-12/15 (10) RFAs lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new lymph mets lung
05/18: Keytruda (MSS w/Intermediate TMB): NED CEA: 66.4, 39.2, 23.8, 13, 3.5 1.8, 1.0, 2.8 3.9, 5.0, 5.6, 1.5, .8,
Re: Regorafanib, here I come (maybe)
Karin,
You have my prayers for your acceptance and prayers for good results. We are here for you. Keep us posted.
NBrandt
You have my prayers for your acceptance and prayers for good results. We are here for you. Keep us posted.
NBrandt
DXCCT3N2aMx 5/20LN
Folfox10/10-4/11
Scan 10-13-10,4-4-11,7-4-11,9-22-11,4-9-12,9-24-12,10-1-13,4-9-14,9-17-14,9-10-15,9-15-17NED,
CEA 1. Pre .6 7-4-11 .7 9-22-11 .6
1-13-12 .9 4-9-12 .7 9-24-12 .6 1-4-13 .8 10-1-13 .8 4-9-14 .7 9-17-15.8
Courage, Hope, Health
Folfox10/10-4/11
Scan 10-13-10,4-4-11,7-4-11,9-22-11,4-9-12,9-24-12,10-1-13,4-9-14,9-17-14,9-10-15,9-15-17NED,
CEA 1. Pre .6 7-4-11 .7 9-22-11 .6
1-13-12 .9 4-9-12 .7 9-24-12 .6 1-4-13 .8 10-1-13 .8 4-9-14 .7 9-17-15.8
Courage, Hope, Health
Re: Regorafanib, here I come (maybe)
That's GREAT!!!
Keep us posted, everybody is curious about this exciting new drug!
-Rick
Keep us posted, everybody is curious about this exciting new drug!
-Rick
M 61, Dx 6/10 CRC st 4, unknown primary CEA 843
2 kg peritoneal mass, met to skull; no surgery
Various regimens of all CRC chemo drugs
Mets to lung 8/11 CEA 135
Folfiri/Erb/Ava 12/11 CEA 320
No progression 5/12 CEA 192
2 kg peritoneal mass, met to skull; no surgery
Various regimens of all CRC chemo drugs
Mets to lung 8/11 CEA 135
Folfiri/Erb/Ava 12/11 CEA 320
No progression 5/12 CEA 192
Re: Regorafanib, here I come (maybe)
I'm so excited for you and I know so many of us are looking forward to what this drug is all about. They say it has very limited side effects.
Stage IV w/liver met dx 7-1-09
KRAS Mutant
Member of the HIPECKERS (2011) and OLYMPHIANS (2012)
2/14 - standard chemo has stopped working
3/14 - Stivarga
LIVE LIFE!
KRAS Mutant
Member of the HIPECKERS (2011) and OLYMPHIANS (2012)
2/14 - standard chemo has stopped working
3/14 - Stivarga
LIVE LIFE!
Re: Regorafanib, here I come (maybe)
YES!!!
Be in harmony with your expectations. - Life Out Loud
4/04: dx'd @48 StageIV RectalCA w/9 liver mets. 8 chemos, 4 surgeries, last remission 34 mos.
2/11 recurrence R lung, spinal bone mets - chemo, RFA lung mets
4/12 stopped treatment
4/04: dx'd @48 StageIV RectalCA w/9 liver mets. 8 chemos, 4 surgeries, last remission 34 mos.
2/11 recurrence R lung, spinal bone mets - chemo, RFA lung mets
4/12 stopped treatment
Re: Regorafanib, here I come (maybe)
Rooting for you!
"Half of what I know is wrong. I don't know which half."
Age 56
Dx 19/7/11
R. hemicolectomy 25/7/11
IIIc, 7 / 23 nodes,
no mets
Folfox 21/8/11
CT Scan 6/3/12 NED
CT Scan 21/6/12 30+ lung mets, 2 retroperitoneal tumours
marcdu4.wordpress.com
Age 56
Dx 19/7/11
R. hemicolectomy 25/7/11
IIIc, 7 / 23 nodes,
no mets
Folfox 21/8/11
CT Scan 6/3/12 NED
CT Scan 21/6/12 30+ lung mets, 2 retroperitoneal tumours
marcdu4.wordpress.com
-
NWgirl
- Posts: 6659
- Joined: Sat Feb 02, 2008 3:24 am
- Facebook Username: Belle Piazza
- Location: Battle Ground, Washington
Re: Regorafanib, here I come (maybe)
Awesome news. Hoping the traveling isn't too hard on you and that this stuff WORKS for you!!!!!!
Belle - "Don't Retreat - Reload"DX 10/07 Stage III Rectal
Surgery 11/07; 27 of 38 nodes
Perm Colostomy 8/11
12/10 recurrence lungs & LN's
VATS Jan 2011
Radiation Oct 2013
Chemo for Life
2012 Colondar Model
Surgery 11/07; 27 of 38 nodes
Perm Colostomy 8/11
12/10 recurrence lungs & LN's
VATS Jan 2011
Radiation Oct 2013
Chemo for Life
2012 Colondar Model
-
AJS
- Posts: 753
- Joined: Sun Feb 17, 2008 10:47 am
- Facebook Username: Angie Jennings Stratton
- Location: Virginia
Re: Regorafanib, here I come (maybe)
WOOHOOOOOOOOO!!!!!!
[size=50][color=#FF00FF]Diverticulitis/Resection 12/27/07
Dx 1/08-Stage IIIA CC-2/15 Lymph Nodes-42 yrs old
2/08-8/08 -Folfox/Erbitux
Hysterectomy 3/09-CC on Ovary-Folfiri&Avastin
1/12-resection,bladder surgery,illeostomy
3/12-Illeostomy takedown
5/13-Folfiri/Avastin
Dx 1/08-Stage IIIA CC-2/15 Lymph Nodes-42 yrs old
2/08-8/08 -Folfox/Erbitux
Hysterectomy 3/09-CC on Ovary-Folfiri&Avastin
1/12-resection,bladder surgery,illeostomy
3/12-Illeostomy takedown
5/13-Folfiri/Avastin
Re: Regorafanib, here I come (maybe)
Karmel,
That is awesome, wishing you the best, I hope this is the wonder drug for so many. Keep us posted.
Lisa
That is awesome, wishing you the best, I hope this is the wonder drug for so many. Keep us posted.
Lisa
Lisa
Fiance DX 6/27/11 CC IV w/liver mets,adrenal glnd,pet.
7/25/11 folfox
8/2/11 surg.colon wall prefor.no removal of tumor
8/24/11 folfox ,3/12 5FU, 5/12 irinitecan failed, 7/12 didn't qualify regronfenib
8/13/12 Hospice, 8/18/12 married, died 9/10/2012
Fiance DX 6/27/11 CC IV w/liver mets,adrenal glnd,pet.
7/25/11 folfox
8/2/11 surg.colon wall prefor.no removal of tumor
8/24/11 folfox ,3/12 5FU, 5/12 irinitecan failed, 7/12 didn't qualify regronfenib
8/13/12 Hospice, 8/18/12 married, died 9/10/2012
-
CheeseHead
- Posts: 1171
- Joined: Sat Jul 31, 2010 2:36 pm
- Location: Netherlands
Re: Regorafanib, here I come (maybe)
Great Karmel, hope you qualify, you get it and... it kicks CRC butt!
Cheers,
Cheese
Cheers,
Cheese
- 2008
10 Stg 4 colon srgry
12 Xelox/Avast
2009
05 Liver srgry
-12 Xelox
2010
05 Xelox
08 Iri/Vect
11 Liver srgry
2011
01-05 Iri,Vect,Xeloda
09 CyberKnife
2012
03-07 Ph I trial
08-11 Regorafenib
2013-
Xeloda
Vecti
Iri
Xelox
-
Surroundedbylove
- Posts: 3126
- Joined: Tue Dec 16, 2008 6:43 am
- Location: Seattle
Re: Regorafanib, here I come (maybe)
Great news KarMel - fingers crossed that all goes well!
Surroundedbylove
Rectal Cancer @ 43, '08
Clinical: T3,N2a,MX (IIIB)
6 wks XELOX & radiation
LAR, colonic j-pouch, & temp ileo '09
Surgical: ypT3,ypN0,ypMX (0 of 20 nodes)
FOLFOX; XELOX
Ileo Takedown ‘09
LARS for 10 years before learning it is finally being studied
InterStim Sacral Nerve Neuromodulator 2019
Rectal Cancer @ 43, '08
Clinical: T3,N2a,MX (IIIB)
6 wks XELOX & radiation
LAR, colonic j-pouch, & temp ileo '09
Surgical: ypT3,ypN0,ypMX (0 of 20 nodes)
FOLFOX; XELOX
Ileo Takedown ‘09
LARS for 10 years before learning it is finally being studied
InterStim Sacral Nerve Neuromodulator 2019
-
Bev G
- Posts: 5856
- Joined: Thu Jan 07, 2010 11:19 pm
- Facebook Username: Bev Golde
- Location: Quechee, VT
Re: Regorafanib, here I come (maybe)
Hi KarMel,
This is very wonderful and very exciting news! How cool will it be if you can say 20 years from now: Oh, yeah, I was in on the beginning roll-out of that drug that is totally kicking CRC a$$, and has been for decades! Ummmm....bliss!
Praying that it works perfectly!
Love,
Bev
This is very wonderful and very exciting news! How cool will it be if you can say 20 years from now: Oh, yeah, I was in on the beginning roll-out of that drug that is totally kicking CRC a$$, and has been for decades! Ummmm....bliss!
Praying that it works perfectly!
Love,
Bev
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo
9/13 ^17th clean PET/CT NED for now
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo
9/13 ^17th clean PET/CT NED for now
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